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Obtaining Services for your Special Needs Child.

Updated on October 31, 2013


If we are all about the meetings,

If we are all about the agenda,

If we are all about the budget,

Then who is there for the child's welfare?

For the past two years, I have been in the most head-on battle I have ever encountered.

Parents, wake up! The world is changing, and not for the better for your child!

If you are the parent of a child with special needs, please read and heed this advice.

You will need it. Because whether or not you believe what I write here, all children will be facing a consequence due to the actions of adults.

Adults that evade responsibility to this generation.

Adults that turn their backs on children born with a disability.

Adults that want nothing more than to sit around a table and talk about how smart they are, but fail to realize that it takes education to get that way! Education that will be denied to children with special needs if no one takes a pro-active stance against this abusive system in place that makes it difficult for needs to be met.

I'm speaking out loud and clear for the first time against societal ramifications that I have experienced and witnessed first hand over the course of two years. And it doesn't end well my friends. In fact, it stinks!

Services and Providers.

There is a distinct difference between professionals that render services to your child and providers that render services to your child.

Let's discuss the basics here. For the purpose of this article, let's break down a few basic definitions.

Services are those provided by educational institutions. Schools provide a service.

Providers are professionals such as doctors. Medical providers provide assistance in obtaining health care or medications.

Next, we'll go over each individually to note the differences.


Pediatricians handle medical basics for your child's health care needs. They can also provide referrals to specialists when your child needs more care than the pediatrician can provide.

Unfortunately, there is a huge gap here.

For one thing, insurance companies often require a referral from the pediatrician in order for a child to seek help from a specialist. This means that if a parent chooses to seek help without the pediatrician's authorization, the insurance company can deny any claims. This leaves the parent to pay for medical expenses out of their own pocket.

Secondly, pediatricians do not always know everything.

For example, if your child has frequent skin rashes, a pediatrician may conclude the child has dry skin and tell the parent repeatedly to put lotion on it. After many attempts, the lotion does nothing. The pediatrician insists it must be dry skin and there is nothing more to do than to provide lotion daily.

Quite frankly, the pediatrician upon multiple complaints should wisely refer the parent to a dermatologist, or one who specializes in skin conditions.

What's happening today is that a parent can't just provide a bottle of lotion to the child for itchy dry skin. The parent has to sign a release of medical information to the school, then the school sends that to the doctor, then the doctor sends a note back saying the lotion is fine.

Parents, this takes away our authority. In essence, the school will only take orders from a doctor, not a parent who knows their child best. (I can understand if the child needs eye drops during the day. Then a pediatric note is warranted. But how about for lip gloss or a bottle of water? At what step is it too far reaching to expect a pediatrician to take over authority from a parent's judgment? Ludicrous!)

But what's even more frightening is that certain medical conditions are worsening without proper treatment. Like in the case of itchy skin, that could very well be a symptom of allergies or Eczema. And by the way, I'm just using this as an example. I'm not saying this has happened to me.

Be prepared for the lengthy forms.

Every time you seek help from a different medical professional, be advised you will have to fill out numerous pages of paperwork. Keep a folder for every new specialist to help organize all of your child's medical information.

After a while, it becomes hard to remember what date you saw a certain specialist. And you will need to refer back to the documents or diagnosis at some point.


A child's medical care can be quite complex.

A pediatrician may establish that the child needs more defined medical care, and refer the child to one or more specialists to address a growing list of concerns.

Table A shows a list of common specialists and expertise.

Table A ~ Specialists and Expertise

Child Psychologist
Talk therapy/Play therapy
Pediatric Neurologist
Genetic testing
Child Psychiatrist
Medication Prescriptions
OT/Occupational Therapy
See Table B
Physical Therapy
Behavior Therapist
Behavior Modification/Social Skills Groups
Due to behavior issues/harming themselves, pychosis, or medicine re-evaluation
Partial in-hospitalization
Daily structured treatment program outside of the home
Skin conditions
Ear, nose, throat (including congestion/nasally sounds which may interfere with speech)
Be prepared for each appointment!
I cannot stress enough. If you have other children that you need to bring with you to any appointment for your child with special needs, bring lots of goodies. Pack a bag with snacks such as crackers or cheerios (age appropriate), bottled water, and toys. Some ideas are coloring books and crayons, hand-held video games, a goody bag with party favors new each visit to keep the child entertained!

Ruling out epilepsy.

Some professionals don't even realize that strobe lights are introduced during testing for epilepsy. I had someone once demand I take my son to a second evaluation with strobe light introduction and was told that it's always included in the test.

This just goes to show that parents are being misinformed by professionals who are supposed to know what they are talking about!

What referrals really mean.

Just because a pediatrician refers your child to a specialist, the referral itself is not an indicator of a serious medical problem.

In fact, in speaking with other families, I've learned that pediatricians often refer children to specialists or for medical testing simply to rule out something else.

For instance, a friend of mine had a son who was having behavioral issues in school. The pediatrician referred the child to a specialist who treats epilepsy. The child didn't have epilepsy, but the pediatrician wanted to rule epilepsy out as a cause of the behavior.

An MRI of the Neuron system which some say can be linked to Autism.
An MRI of the Neuron system which some say can be linked to Autism. | Source

Working with a Child Psychologist or Therapist.

Here's what to expect when your child begins treatment with a Child Psychologist or Therapist.

The first thing to note is that not all psychologists are the same.

Some are experts in a certain area such as Autism or Down Syndrome.

It's very difficult locating a therapist on your own. You will most likely need a referral from your doctor.

At the first meeting, establish whether or not the therapist accepts your child's health insurance. Ask how much your co-pay will be. Also, confirm this information with your insurance company.

Many times, your insurance company will go over explicit information with a billing staff of the medical provider, but they fail to tell you how much you will really owe out-of-pocket.

This step is extremely critical because you do not want to find out that your child's therapist is actually not covered, and you end up owing a large sum of money. You don't need this added stress and aggravation. Do not rely on the office to explain it to you. Get the information yourself first hand.

Also, expect the therapist to refer your child to additional services. These might include:

  • Psychiatric evaluation for medicine
  • Hospitalization program for out-patient behavior modification
  • Occupational Therapy
  • Physical Therapy

Wether or not those particular specialists apply in your child's situation, expect that the therapist will refer you to more places that the pediatrician. The therapist will know whether or not the child needs a medicine evaluation for needs other than strictly medical. For example, your child's therapist will refer you to a psychiatrist to get a medicine evaluation for ADHD symptoms.

If your child exhibits worsening behavior, never hesitate to call your child's therapist. However, if the therapist refuses to see your child or misses an appointment because they are disorganized, find someone else.

There are many therapists, but there are not many therapists that work with children with special needs. It's a huge problem, especially in my area, because there are only a few therapists and there are many children that need one.

Keep a notebook of medical conversations.
Write all of your notes in one place pertaining to each event or call. Keep mutliple notebooks if need be. Make sure you write down:
date of call(s) ~ even if there is no conversation (if you just leave a message)
time of calls(s)
name of representative
confirmation number (if applicable)

Working with a Case Manager from an insurance company.

If you are not getting help, or feel that the pediatrician and therapist aren't doing enough, you have every right to call your insurance company.

Ask for a Case Manager. It's free. A Case Manager is often a nurse or social worker who is employed by the insurance company. They have a separate phone line so you don't have to call the number on your insurance card every time you need assistance.

A Case Manager will work with you in the following ways:

  • They will accommodate you with regular phone conversations about progress.
  • They will help you find medical providers for your child.
  • They will call medical providers if you are unable to retain someone.
  • They will help research in your area some special needs friendly services such as sensory-friendly movie theaters.
  • They will also be there to talk to when you have a legitimate complaint about a medical provider.

How to obtain a Case Manager.

Call your insurance company at the number on the child's insurance card.

Ask to speak to a Case Manager. Normally, there is a turnaround time of 24-48 hours. It helps to call in advance if you are scheduled for medical services and waiting for an appointment, that way you will have a Case Manager on your team from the beginning.

Working with a Child Psychiatrist.

Child Psychiatrists evaluate your child to see how and what medications are available to help their individual needs.

Most often times, Psychiatrists will either have a rule or not about Therapists. So for example, some psychiatry groups will insist that your child sees a therapist from their group. Others, do not. Meaning, if you have a therapist your child has been seeing, some Psychiatrists will allow your child to see a therapist independently from their group.

Others, require that your child stay within their group and see a therapist and a psychiatrist from their office. This keeps the child's file all together, which is a good idea.

However, in my area, I could not find a group that had both.

We had to use a separate group for therapy and a separate group for medicine.

So that's just something to keep in mind.

Don't be alarmed if you are suddenly told you have to switch therapists or the psychiatrist will not evaluate your child.

Also, be warned. If your child is first seen at a hospital setting, instead of a private psychiatry setting, the hospital will start your child on medication. However, the Psychiatrist may have a rule to stop the medication and start over after their own evaluation.

This can complicate matters further if your child suddenly starts doing so well because of the medication and now has to stop it because the new group insists. It's not fair, but it's reality. So once again, it's best to keep your child on the medicine that works! But it's not always possible because of the rules of each different psychiatric group.

Table A ~ Occupational Therapy

  • sensory integration (SI)
  • neurodevelopmental treatment (NDT)
  • therapeutic listening
  • handwriting support
  • daily living activities
  • aquatic therapy
  • social skills group
  • modulation skills group
  • upper extremity strength and endurance groups
  • handwriting skills groups

Working with schools.

Each state is different. Each town is different.

There are different rules. There are different ways teachers conduct a classroom.

Children with special needs require different services based on disability.

Some children are wheel-chair bound. Some children use hearing devices. Some children need special glasses. Some children need services as well such as speech therapy, occupational therapy, and a helper in the classroom.

Long ago, it used to be when a child had special needs, the child would be segregated and placed in a special needs classroom with a special needs teacher.

Today, children are mainstreamed in the classroom with a helper.

Here's the problem.

Some people feel that a helper is unnecessary and stifles independence. They don't feel that the helper is conducive to the child's learning environment.

Others feel that without a helper, the child would not be able to get through the day, never mind learn anything at all.

One parent expressed that her child needs a reading helper. The helper reads the tests to the child so that the child can answer the questions. This child has Down Syndrome. She is not capable of completing a test without the helper. The school has decided though that educating the child isn't as important as making the child an independent learner. They have proposed to take away the helper over the next three years. In protest, the parents feel that if the helper goes away, the child will once again be secluded and not be able to attend a regular classroom.

My question is, doesn't a helper and learning go hand in hand? How can the school achieve independent learning if there is no one to help the child learn?

In another discussion, I learned that teachers are going to be held accountable for all of their own students. In other words, all students have to be above a certain percentage in academics for the teacher to keep their job. This means, if there are no helpers, and there are children with special needs in a classroom, the teacher will be solely responsible for creating independent learners. The teachers will not receive help and the children will not receive help.

Some say that there should be no need for a helper. Well, I disagree. Each student is different. How does anyone expect a child with a handicap to sit at a desk all day like all the other children, and not interrupt the class repeatedly, or stay in their chair for that matter, or be able to learn independently when they were born with a disorder that prevents them from doing so?

Parents and teachers alike, this is coming to a school near you fairly soon. If you do not believe what I write, and you are concerned about it, call your state's Board of Education and find out for yourself.

Ask the following questions:

  • How many helpers are there overall in your school district?
  • Have there been or will there be any lay offs in the school district?
  • What percentage of the state is special needs children?
  • What percentage of your town, or individual towns, is special needs students?
  • What town has the highest rate of special needs students?
  • Does your town have a higher rate of special needs than the overall state rate? (For example, the state has a rate of 10%, but your town has 15%.)
  • Does trending data indicate there are more families moving to or away from the area?

Also, are helpers allowed to attend PPT meetings? Are helpers allowed to review the IEP?

In my town, helpers are allowed to review IEPs on file, but not directly on the computer as they are not given permission to log on to the database. They are not however, allowed to attend PPT meetings.

How does your town handle communication between parents, teachers, helpers, and school administrators?

The teacher-student-monument in Rostock, Germany, honoring teachers.

Creative Commons Attribution-Share Alike 3.0 Unported license.  Author:  Schiwago.
Creative Commons Attribution-Share Alike 3.0 Unported license. Author: Schiwago. | Source

Fitting the pieces together for the most beneficial outcome for your child.

So what's the problem, and why am I writing this article?

Well, first of all, I have a child with Autism. He wasn't diagnosed though until he was older.

I went through a tremendous time, devastating financial repercussions, and a battle I thought would never end. I wanted to set forth what I've learned so that maybe another family could learn from it and find this information beneficial to their child.

The real problem is there is a disconnect in society. No one wants to take responsibility.

The school will provide what they legally have to.

If the child acts up in class, they take away art.

If the child behaves inappropriate in class, they stick them aside in a calming room.

The school brings a budget and an agenda. They follow the state's mandates and that's it.

Don't even think as a parent, you will change the school. There is only one way to do that and it's not through sitting in meetings or expressing yourself. The school administration will dance around your words, and they will evade your concerns. They will not accept any obligation to do anything extra for your child that they legally do not have to do. Follow the money.

Don't blame the teachers. They work for a living like anyone else. It's not their fault. They have no control over what the state decides is legally mandatory for each school. The teachers are on the front lines with your child. You need them as much as your child does. And this is being said even after I homeschooled my own children for a while. Because let me tell you, the teacher is your friend. The teacher is there for your child every day. Your child learns to read and write because the teacher is there. And that's important because if the helper is taken out of the classroom, not only does the child suffer, but so does the teacher.

The disconnect is this.

Your child has special needs. If your child was born with a disability, it was recognized and dealt with from day one. If your child was born with Autism, there may be a delay when the diagnosis is actually issued, even much older children are being diagnosed as late as middle school.

When your child needs services and providers, there isn't just one place to get all of it. Your pediatrician refers you to a therapist. The therapist refers you to three different places. Pretty soon all you do is go to appointment after appointment. Your child is in school and the school deals with issues in their own way.

When you go to your child's private therapist, they might help you through meltdowns by telling your child about red light and green light. Red light means whoa, too much energy in the room, let's calm down. Green light means the child is calm and ready to listen.

But as I found out, the school doesn't have to follow what the therapist taught my child, the school follows what they do.

Why is that a bad thing?

Because there is a disconnect. There is no connection between all of these services. Everyone is going in a different direction. How does that not confuse a child?

What is a Care Coordinator?
Care Coordinator A professional care manager, usually with a background in health care, provided by a long-term care insurance company. The Care Coordinator works with the insured and the insurance company to create a plan of care when a long-term care need arises.

Working with a Care Coordinator.

You may or may not have a Care Coordinator in your area.

A Care Coordinator provides a level of service to the parents. It's normally free if you go through a nonprofit agency. However, there are professional private Care Coordinators that do charge a fee.

This is quite a process in itself.

A Care Coordinator would be most beneficial in the initial stages of diagnoses. But as I have found out, even when you've gone through several years of medical providers and school issues, a Care Coordinator can bring some new ideas to the table, but most often just causes more disruption to your life.

I'm very thankful for the experience I had with a Care Coordinator. My son would probably not have had the opportunities he had without her help.

But, the point is, if you are just starting out, now is the time to procure a Care Coordinator. Not, after you have multiple diagnosis, hospitalizations, etc. By this time you are broke and tired. So there's not much left for a Care Coordinator to do except complicate your life with more meetings, more appointments, and more stuff!

The undignified process.

There is no dignity in a process which inhibits the growth of a child so desperately in the need of competent medical care.

Yet that's exactly what this two-year journey has brought me to. A very humble approach to teaching others how to help their child.

What you need to know about seeking a specialist for the first time:

  1. When your child is identified as having a disorder, it's ok to ask your pediatrician where to turn. Do not rely solely on referrals from a pediatrician who has limited knowledge and expertise of your child's diagnosis. Many disorders are broad reaching with various factors. Research your child's diagnosis online and find out what other parents have done before you.
  2. Do not think you have to reinvent the wheel. My pediatrician sent me to a specialist who had no experience in what we were asking of her. We spent a year re-inventing what other parents have already created before us (because the specialist wasn't up-to-date on new medical research and techniques).
  3. Before meeting with a specialist, get a notebook and write down any questions you may have including concerns you read about online. All of your questions and concerns are legitimate. Your child is your responsibility. If a specialist ever invalidates your questions, stop going to them and find someone else. (It doesn't mean you do not have legitimate concerns. It means the therapist isn't interested in your child as much as you are. You have the right to seek professional guidance from someone who has as much information to offer as you have to ask for.)
  4. Stay in contact with your insurance company. If a specialist ever tells you that your insurance company has not agreed to pay for their services, call your insurance company in front of the specialist or staff member questioning your coverage.
  5. If your specialist comes across as threatening you more than helping your child, stop seeing them immediately and report them if necessary. There are many specialists qualified to assist you in your child's medical endeavor. You do not have to be victimized by overzealous specialists in it for a paycheck! This is YOUR child's medical care they are messing with!
  6. If your specialist misses appointments, find someone else immediately. This will tell you the same type of sloppiness they put in to their work will carry over in to your child's medical care.
  7. If your specialist's office staff doesn't seem to care about you and treats you like just picked a number at a deli line, do not go back. Cancel future appointments and move forward.
  8. The specialist you are referred to should be open; willing to communicate (even possibly by cell phone after hours and through email); willing to listen to every question; willing to take the time to meet with you alone after initially meeting your child; accepts your insurance and is honest about it if they don't; has flexible availability for making appointments; and has a neutral personality that you can agree with.

Do you feel your child with special needs has been treated fairly at school?

See results

Is there a cure?

I never like using the word disability. I believe all children have abilities!

However, for the point of this article, I used that word to get across what is really happening right now before our eyes.

Children with diagnosis are the most precious. They rely on us! They rely on adults! They trust us with their lives. Their growth depends on us! Their education depends on us!

Shame on adults who close their eyes and turn away from the needs of our most vulnerable in society.

Is there a cure for adults who act this way? Is there a cure for adults who had no compassion and who bring a budget to a table before the welfare of a child?

Words cannot express how disheartening and disgusting this process has become.

And it's a war! It's a war for parents who have children who have not yet been diagnosed or who have not yet been through the system.

Heed my words. Please. If it is the only thing you do, don't take my word for it, look in to it yourself.

Change is going to be coming. It's going to devastate teachers and special needs students alike.

Why am I speaking out? For the voiceless. For the ones who cannot speak for themselves!

Keep organized through the process.

Here are some helpful ways to stay organized.

  • Keep a home calendar on a wall in a common area of your home, such as your kitchen.
  • Keep a white board on the fridge with appointments coming up in the week.
  • Keep a pocket calendar and notebook to take quick notes on the go.
  • Keep a journal for all calls and information pertaining to your child.

What I would like to see in the future:

  1. Insurance companies should automatically assign case managers to children who are diagnosed with long-term medical problems (not just special needs) that have no cure.
  2. Streamline health services so that medical needs are met in a consistent progression for all patients with the same diagnosis.
  3. There needs to be a connection between what therapists teach to children. Techniques should be applied in schools. Teaching different methods of behavior intervention don't work unless all hands are on deck.
  4. There needs to be open dialogue communication between parents and schools. Not just dictated direction to certain school employees that they can only talk to parents under the school's authority.
  5. There needs to be kindness, compassion, and heart for children with special needs.

Let's not go back to segregating children because they are different!


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    • AustralianNappies profile image


      5 years ago from Australia

      I'm glad you could share your own experiences on this topic and I'm sure it will be useful for many others! Best wishes to you and your family!

    • CraftytotheCore profile imageAUTHOR


      5 years ago

      Hi Ologsinquito. Thanks so much for commenting. I hear from others every day about the struggles they face. I have been pretty fortunate considering what others have gone through. Yet at times it seems like an uphill climb carrying a huge weight.

    • CraftytotheCore profile imageAUTHOR


      5 years ago

      Hi Au Fait, thank you so much for stopping by. What's so frustrating to me is that our neighbor state which is much smaller has 10x the amount of resources for children with special needs. Here it's a fight to get even basic services through public school. My son went through occupational therapy privately at my expense twice, but yet the school doesn't apply what he's learned to their daily strategies for helping him in school. My complaint to the board of ed is what is the idea behind enrolling him in occupational therapy then which is quite costly if it's not going to serve any purpose for him out in real life (at school)?

      Another common problem children with Autism face are sensory issues. In Rhode Island, there are therapists for children that will actually take the child to the store to learn how to navigate a store and other real life experiences. There is no such service in this state. I called several therapists and asked if they would like to help us with that and they said it's not offered in this state by anyone at all. Seems so ridiculous.

      I forget where I saw this but there is a country which has little faux communities set up with shops and restaurants. Therapists teach real world living to children and teenagers with special needs by walking them through these faux communities. I thought that was a brilliant idea. I would love to see more of those set up around America.

    • CraftytotheCore profile imageAUTHOR


      5 years ago

      Hi Rebekah, thanks so much for adding your insight to this as an early childhood educator.

      I have encountered many parents who refuse to acknowledge that their child needs further evaluations. There are several children in the school here that would benefit greatly from medical consultation, but the parents just leave the school to deal with it. The child is the one that suffers.

      My son wasn't diagnosed with Autism until later. When he was younger, for example, his pediatrician kept telling me that he was developmentally delayed in areas such as speech, but in fact he was diagnosed with phonological disorder later on. He is currently in speech therapy at school.

      Our school system wants to eliminate the aides within three years, leaving the teachers to deal with classrooms full of children. The state thinks by making a standard all children have to conform to regardless of ability or disability, it will provide a positive support system for public schools. I think it's ridiculous. For example, I know of a lady whose child was shaken in day care. The child has shaken baby syndrome and suffered brain damage. The child does not "behave" in a way that conforms to the school standard. So the child is punished by having privileges in school taken away. The mother sued the school system and won. Her child is now placed in an alternative school for children with handicaps. This shouldn't be happening. We pay enough tax here to provide a supportive environment for children with special needs. The entire system needs to be reformed.

    • CraftytotheCore profile imageAUTHOR


      5 years ago

      Hi Valerja. Thank you for stopping by.

      The old-school way of thinking in America as well was to institutionalize those that couldn't fend for themselves. If a child had needs above that of a normal child, there were group homes and medical facilities where the child could go live. The state took care of it.

      Today, many of those facilities have closed. People with special needs are often taught independent living now more than ever.

      I've also heard from missionaries traveling to other countries that most special needs children are shunned by families and communities. They are left on the street to fend for themselves, even those that cannot walk.

      While I do not have answers to all of your questions, I know that there are many people who ask the same ones. So I will do my best to respond so that everyone can see my insight as a parent of a child with special needs.

      I do see your point, that it may seem like the "normal" child doesn't have as much incentive when the child with special needs is getting all of the attention, as a mother of two I do everything in my capacity of chief family manager (LOL) to make sure that both of my children get the love and attention they need. One day on our way to school, my daughter asked why my son gets to get out of school 1/2 day when she has to go full day. She told me it's not fair. And I told her that it's not fair that her son has Autism either as he didn't ask for that.

      I have always had a special place in my heart for children with special needs. I view them as angels on earth. My friend Danny from high school had a low IQ and was classified as mentally challenged. He went on to live independently away from home and hold a full-time job at the local supermarket. He supports himself. His mother and I have remained friendly over the years. She enjoys meeting up with Danny on his lunch break for a slice of pizza.

      There is a distinct difference between a bad child and a child with special needs. The problem we are facing today in America is that all children regardless of ability or disability or expected to conform to a certain standard. When we don't meet that standard, we're labeled.

      As humans, it's in our nature to be different. What makes us good? We all have the ability to be a little bad now and then! ;)

    • CraftytotheCore profile imageAUTHOR


      5 years ago

      Hi Swilliams! Thank you so much for stopping by and your lovely comments.

    • CraftytotheCore profile imageAUTHOR


      5 years ago

      Thank you Audrey! I wasn't here when it was HOTD, but I was so thrilled to see so many comments. It really made my day.

    • CraftytotheCore profile imageAUTHOR


      5 years ago

      Hi Whonu! I have a special place in my heart for special needs teachers. I work closely with the teacher at my son's school. Thank you for commenting here.

    • CraftytotheCore profile imageAUTHOR


      5 years ago

      Hi Perspycacious. It's surely getting worse and worse. I spent three weeks tracking down therapists that supposedly specialize in Autism. Most of them are getting out of it all together. They don't want to deal with insurance. Some have simply stopped taking insurance and unless a person has over $100 an hour to pay for services, they won't get the treatment they need. It's definitely a terrible situation.

    • CraftytotheCore profile imageAUTHOR


      5 years ago

      Hi Kimberly Lake! Welcome, and thanks so much for stopping by. I appreciate you sharing your story here.

      From what I've learned, it used to be popular to diagnose children with Bipolar. My son was diagnosed with Autism and ADHD in 2012.

      Medication for Autism is so hard to pinpoint for each child. It's not like taking a Tylenol. It has to be specific to the child because the brain is so complex. My son takes a small dose of Risperdal which recently he was taken off of because he developed a neurological issue. Also just recently because of problems in school, he was placed on a third medication. But the neurologist and psychiatrist do not agree on it. One says it works for mood stability. The other says nonsense that children are over-diagnosed with mood disorder.

      It's hard to find consistency in the medical world. It's very frustrating as a parent.

    • CraftytotheCore profile imageAUTHOR


      5 years ago

      Thank you so much Faith! I truly value your friendship on HP!

    • CraftytotheCore profile imageAUTHOR


      5 years ago

      Dolores, (HUGS) to you and your daughter my friend. I read your story and I just want to scream.

      It seems absolutely ridiculous and it angers me that there aren't more services for children with special needs. It is nearly impossible to find specialists even though these needs have been around for years. Before my son was diagnosed, we too were shuffled from hospital to hospital.

      What I was told at a board of ed meeting is that children are treated on individual basis now. I made a point of saying that there is a disconnect between the medical and educational communities. We learned different strategies at hospitals and in occupational therapy, but the school doesn't apply them during the day.

      Our school system treats all children the same regardless of disability. This is a really bad idea. Because for example, my son has Autism and ADHD. So sometimes he does thing repeatedly like tap his pencil on a desk. He isn't doing it on purpose or trying to be annoying, he honestly can't help it. He also rocks in a chair to process information. Sometimes he won't listen to instruction. The medical community said to remove him from what he is doing when he won't listen. Instead, the school punishes him by taking away art, music, and recess. My question is how they think it's appropriate to treat a child with a disability like this and think it's fair? I think it's discrimination.

      Also, despite having the diagnosis by 2 hospitals and private psychiatrists, the school tossed that out and their own school psychologist decided that my son is just annoying. But yet they said he does fall under the special needs umbrella. How is this even legal? How can they get away with tossing out a diagnosis and just treating him like he is "normal" with bad behavior?

      Honestly, I would move in a heartbeat. But where would that leave all the children who are going through the same thing. I'd rather fight it on state level. It may take legislative action.

    • CraftytotheCore profile imageAUTHOR


      5 years ago

      Hi writingowl! Thanks so much for stopping by and telling me about your son. I live in a very small state in the US. Our medical bills were over $200,000 before state insurance started picking up the co-pays. We still have to provide a primary insurance which costs $40 a week. But the state insurance pays for all the co-pays which are $50 per office visit for the psychiatrists and a therapist, plus $25 a visit for the pediatrician. Every little bit helps. Occupational therapy and speech therapy are not usually covered at all and have to be paid upfront. We spent $6,000 on speech therapy before we enrolled my son in a public school which offers speech therapy weekly.

      Just recently, since writing this article, I discovered that there is a huge lack of therapists. I called around to about a dozen. Most said that they would not even see my son because they don't specialize in Autism. Several said they don't accept state insurance as a secondary. A few said they only charge by the hour about $130 to 250 per hour. Others have such a long wait like you say. Even still, some won't see children until they are teenagers.

      I've heard there are some states in the US with terrific therapy programs in place in school. My son was in a different school last year. He received speech therapy and a one-on-one aide. This year he was mainstreamed which worked out ok for a while. Then he started having neurological issues so we are now at 1/2 days. He has to go for an MRI next week.

      We have 2 geneticists in this state. Yale has one that we've been to and my son had a full panel of genetic tests. They thought he had Fragile X, but that was ruled out.

      There is also a center here that specializes in ADHD, but because the school did a bunch of testing when my son was enrolled, the center won't see us.

      I hope to see a day when there are more resources available for children with Autism.

    • ologsinquito profile image


      5 years ago from USA

      This gives people a good idea of the battle you've had to fight to obtain services for your child. Congratulations on HOTD.

    • Au fait profile image

      C E Clark 

      5 years ago from North Texas

      This does sound so complicated. I work with special needs children of all ages everyday. There are a lot of laws and regulations that relate to what I can say and do. We really do owe it to the children to see that they have the most normal lives possible and the best possible experiences. That gets tricky sometimes with the state involved.

      Congratulations of HOTD!

    • rebekahELLE profile image


      5 years ago from Tampa Bay

      You've written a very informative and helpful article. I'm sure it will help many frustrated parents out there looking for answers. I am an early childhood educator and have had numerous children diagnosed somewhere on the autism spectrum in my classrooms throughout the years. I know the frustration of both parents and educators. One of the most serious issues that I see is that of parents who don't want to address the possibility that their child does have specific learning disabilities. Teachers are blamed for the child's misbehavior. Most recently our school (privately owned) had to dismiss a child from the school because we simply don't have the resources or learning environment that the child needs at this time. The earlier a child can receive a proper evaluation and diagnosis, the better for the child, the family and the school in which the child will receive services. My heart goes out to families that have to wrestle through the system while at the same time trying to parent their child in the best way that they know. I've worked on a limited basis with a few children with a helper in the room. The helpers were focused on their child only and I saw the benefits of having a trained therapist as a helper. Not all families or schools have this access. My only advice to parents who may wonder if their child has specific learning needs is to seek help as early as possible, before a child enters Kindergarten. We all want the best for these children and their families.

    • profile image


      5 years ago

      I can't imagine how stressful it must be to parent one of these children, let alone to several, as with some families where this runs in the genes. But what do these children do when they become "adults" and they're no longer entitled to have a host of specialists cater to their every particular need? What's the prognosis?

      Do they just live at home with you until they're middle aged? Do they have to live in halfway houses when you're too old to care for them? At some point will you just have to institutionalize them?

      Serious question, how do you know for sure some of these children aren't just milking the situation to be the center of attention? After an episode of bad behavior the child sees that he gets his own dedicated team of care-takers, what if he just continues acting out so that he retains the attention? If there are siblings, some children might use this as a way to beat them out for more parental attention. How do they determine that it's not just an act, like you give them an inch, they take a mile.

      Last question, doesn't all this extra attention given to the problem child foster resentment among the normal well-adjusted siblings? I foresee a situation where your normal children grow up, leave the nest, and as adults want little to do with you because you devoted all your resources to one child, a child who was never going to improve anyway. How do you determine the distribution of time and resources when you have good children and one problem child?

      Growing up in Eastern Europe we did not recognize any such diseases as ADHD or "conduct disorder." There were good children and bad children. Bad children did not get extra attention; they got less. And somehow they eventually learned that there wasn't going to be any reward for their bad behavior and so they straightened out and became good children. This system you have in the States seems like you reward the bad children with extra attention and disregard the good children. No wonder there is such a high incidence of special needs behavioral problems in the States. There's no incentive to be a good well-adjusted child.

    • profile image


      5 years ago

      This is a great and useful article which has appeared in a timely manner. Thank you for the advice. I like how you started your article off with valid questions. Thank you! Voted up and tweeted out!

    • AudreyHowitt profile image

      Audrey Howitt 

      5 years ago from California

      Congratulations on your hotd!!!

    • whonunuwho profile image


      5 years ago from United States

      A very good road map for parents of children with special needs. Thank you for your hard work and devotion. As a special needs teacher for may years., I faced a daily uphill battle. It has been well worth it and my life has been very rewarding to me. Thanks again for your dedication. whonu

    • Perspycacious profile image

      Demas W Jasper 

      5 years ago from Today's America and The World Beyond

      As stated above, our current "medicate system" is "a rush to judgment" based on diagnose, prescribe, and "next please." Sad to have medicine be "on the clock" and it is unlikely to get better as there become more and more patients for the same number of health care providers. If it was difficult to get online and sign up for coverage, try getting in line to actually use it!

    • KimberlyLake profile image

      Kimberly Lake 

      5 years ago from California

      Congrats on Hub of the day, well deserved. Your hub is really detailed and honest. I am sure many special needs parents will benefit from your information. I have two special needs children. One is 25 and has children of his own. He struggled through school and I could not navigate through the medical and school system successfully and get him help. It turns out after IEP after IEP, Psychologist visits, ER visits, doctor visits (on and on) they continued to diagnose him with ADHD, Bipolar. They medication never worked for him and made him feel number he refused to take it. Then at 23 years old he was diagnosed with Asbergers

    • Faith Reaper profile image

      Faith Reaper 

      5 years ago from southern USA

      Congrats Crafty on the HOTD for this awesome hub here!

      Up and more, tweeting, pinning


      Faith Reaper

    • Dolores Monet profile image

      Dolores Monet 

      5 years ago from East Coast, United States

      I am sorry for all the crap that you have been through. As a parent of a special needs child, so much of your time is taken up with bureaucracy. My daughter has Down syndrome. When she was young, that was back in the day when special needs children were segregated. It was a simpler time. She learned to read and was taught functional living skills, as well as simple skills in order that she could find a job. She was in good health, so that was not a problem. There were few fights, the teachers cared and understood her individual needs and talents.

      Now that my daughter is older, there are health concerns. We simply could not find a doctor who specialized in people with Down syndrome. She had developed late in life seizures, terrible seizures that afterwards, resulted in a loss of abilities. We were shunted from hospital to hospital last summer and wound up in a hospital that claims that it is the #1 neurological unit in the world. It was a nightmare. When we told the docs that she is sensitive to meds, they ignored us. She was given massive doses of meds. In one case two meds, one by accident. Overdosed, after our warnings, she slept deeply for over a week. Then when her stomach hurt after her first real meal, I requested some gas medication. It took 8 hours to her a simple over the counter gas medicine. First, they had to give her an Xray.

      The entire scene was a nightmare.

      Later, when she wound up in the hospital again, they were going to bring in the same doctor who overdosed her. I thought I'd go nuts. I told the nurse that I would not allow this man into the same room with her. I explained. I was treated like a crazy person. This is only the half of it.

      If you have a child with special needs, you must educate yourself. You must be prepared to fight. You must learn key words, certain words and phrases that, somehow, get them to listen. As your said, no one wants to take repsonsibility.

    • thewritingowl profile image

      Mary Kelly Godley 

      5 years ago from Ireland

      Well done this is a very informative, interesring article. I live in Ireland and I have a Special Needs son (Autism. ADHD and DD). Here its even far worse, the state have no money to provide any therapy and our Health Insurance covers nothing except medical treatment so any OT, SLT etc has to be paid for. Then though like your story there are so few therapists out there and and if you find a new SLT it is not necessarily one that works with autistic kids. Or a Psychologist has such a long list that they can't see you for two years or not at all. The school is great and my son alternates between a special ASD class and the mainstream class but the therapeutic support they get is practaically nil. As for up to date info I don't think any of the professionals we have seen are even aware of most of it, or the state say its not an approved treatment yet. We've been waiting three years to see a Clinical Geneticist and there isn't a hope of getting an appointment to see any type pf Neurologist. Worst thing here is its a small country and its very much a closed shop in terms of if you get the opinion of one Medical Professional no other one will even see you as they say you already have an evaluation. Its a tough road that's for certain.

    • CraftytotheCore profile imageAUTHOR


      5 years ago

      Hi Midget38. Thanks so much for your input here. That's wonderful that you taught in a special needs school for a while. We need more teachers like you in the world!

    • midget38 profile image

      Michelle Liew 

      5 years ago from Singapore

      This seems to be a phenomenon the world over. I was teaching in a special needs school for a while and found that yes, the gaps are alarming. Things seem to be more pronounced with children with special needs!

    • CraftytotheCore profile imageAUTHOR


      5 years ago

      Hi Tom! You have such great and inspiring ideas. Congratulations on moving on up in commenting! LOL

      Ironically, as I told the Board of Ed, there is a huge disconnect in medical and education for children with special needs.

      For example, there is one place 1 1/2 hours away from here that does music therapy. The catch? They only take foster children.

      There is another place 30 minutes from here. The catch? The waiting list is a year wait. This place specializes in play/learn sessions with other children.

      I asked if I could host something at my house. I was told that it would cause great liability and no one thought it was appropriate.

      You do such good in the world Tom. Thanks so much for stopping by and commenting. All of your talents amaze me!

    • Tom Mukasa profile image

      Tom Mukasa 

      5 years ago from Lives in USA

      CraftytotheCore, is there a way of having after school sessions or 'empowerment' ( I still ask my friends here why they use such words like 'remedial') classes, for children we are talking about following your article, in your area? In Uganda, I worked with recovering abductees/former child soldiers. Currently, I am working with refugee/asylum seekers' children and I find these extra classes are very helpful. For children with ADHD or psychomotor disabilities the goal-play-learn methods can be helpful. Not that we want to re-invent the wheel, but we need to encourage a longer list of expectations/outcomes for our children. Am sorry we are making an already overworked-lowly-paid cadre work more! Oh, by the way am now a level II Commenter! Clap, clap, clap!!!

    • CraftytotheCore profile imageAUTHOR


      5 years ago

      Hi Rebecca, thank you for taking the time to post here. Unfortunately my son had the opposite experience. He wasn't diagnosed until later. And even after his diagnosis, there are still difficulties obtaining services. But you are correct, a lot of children are "labeled" improperly. My son wasn't diagnosed with Autism until later because everyone thought he was a "bad" child.

    • Rebecca Furtado profile image

      Rebecca Furtado 

      5 years ago from Anderson, Indiana

      This is a great resource article. A word of caution. If there is a tendency in our society to ignore children with disabilities there is also a tendency to label every child with a disorder. Use common sense. Yesterday,I spent twenty minutes talking to a bank teller whose preschool child the teacher is wanting to label. Not all children develop at the same rate at that does not need to become a label a child needs to bear all his academic life. A parent is the best person to judge if something is really a miss in a child. Your gut will usually not lead you to the wrong conclusion.

    • CraftytotheCore profile imageAUTHOR


      5 years ago

      Hi kidscrafts. I know, that's exactly what I tried telling the Board of Ed. I don't think there is enough training. As a parent, I had to go through a lot of different training. So I feel at the least, the school employees and the medical professionals who work with parents should combine ideas so that everyone is working off of the same standards.

    • kidscrafts profile image


      5 years ago from Ottawa, Canada

      Some people prefer to have their head in the sand! How unfortunate! I feel very sorry for the little boy; and for sure the yelling didn't help... on the contrary!

    • CraftytotheCore profile imageAUTHOR


      5 years ago

      Hi Cfin! Thank you for commenting. Part of the problem with the misdiagnosis is, as I told the board of ed, there is a disconnect between medical and school. The school here any way only has to provide what's necessary for educating the child. The more the child is diagnosed with, the more the school has to provide. So when a person doesn't get help for their child outside of the school, they are relying on what the school feels is necessary to educate the child to the minimum requirements. It's really a tragedy here and schools are not fond of parents like me who speak up for my child and advocate for his best interests.

      I checked out that link. That is quite an amazing program.

    • cfin profile image


      5 years ago from The World we live in

      My wife's cousin was diagnosed with Autism at 13 in Wisconsin. Before that, they said he had ADHD. His schooling was terrible and now because he has been diagnosed, I believe it has improved.

      Courses like this are amazing (although this one is under review, probably due to lack of sustainability due to it being no profit). Trinity college is a top 100 in the world college and I am so proud of them for providing such courses.

    • CraftytotheCore profile imageAUTHOR


      5 years ago

      Hi Shyron! My son's surgery is scheduled for Nov. 20. The catch 22 is if the insurance will pay for the facility. It's a new facility. If insurance won't pay for it, we'll have to reschedule the appointment. Even though it's right before Thanksgiving, it will be convenient for us because he won't miss as much school. It's 5 days out of school. And, there are 2 1/2 days off the week after surgery. So he'll be able to recover without worrying about missing too many days.

      It amazes me how many people that work with children have no clue about special needs children. For example, I had to see a nurse for my children one day at the health center. The teacher had sent my daughter to the nurse's office the day before. So I made an appointment before school. My daughter had a pair of pretty shoes on. My son was wearing his regular sneakers. The nurse complimented my daughter on her shoes and said they were really pretty. My son said, "what about mine?" The nurse said, well yours are not pretty.

      My son nearly had a catastrophic meltdown. He takes everything very literally. For instance, I can't say, "get out of town", which is a common expression. To him, it means, he must leave town, literally.

      The bottom line for me is that there definitely needs to be more pro-awareness for special needs. Everyone needs to understand the abilities of these marvelous children, and speak to them the way they would like to be spoken to.

    • CraftytotheCore profile imageAUTHOR


      5 years ago

      Yes, Kidscrafts, you hit it right home. The teacher had pre-conceived notions about my son. That is true.

      Today I went to pick up my children at school. We don't have bus service in our neighborhood because we live within a certain distance from school. My son is eligible for bus service though, but because I have a daughter at the same school it just makes more sense for me to pick them both up. I can't be in two places at once.

      Well, my husband was with me today. We walked up to the path where the children come out of the school with their aides. I saw my neighbor with her little boy and I was just about to say hello, when a child who is obviously special needs, sat right down on the sidewalk and pitched a fit because he didn't want to get on the bus. I have been trained by the professionals who work with my son such as the psychiatrist and therapist. The school aide who supposedly is qualified through state licensing, yelled right directly at the little boy in his face that he better get up and walk to the bus or she was going to call his mother who has no car to come get him. I just stood there in complete disgust wanting to open my mouth in the worst way. But I knew if I had, all heck would have broke loose on the sidewalk.

      The little boy had about 5 people surrounding him as they got him on the bus, all the while they were all saying they were going to restrain him on the bus.

      I looked at my neighbor and finally said hello but we were both feeling so glum at that point.

      I would have never yelled at the child's face. First of all anyone would react worse if someone is yelling at them. But the combination of yelling and saying the child would be restrained is enough to scare anyone, never mind a child with special needs. As I don't know what the child's diagnosis is, I can honestly say that wouldn't be how I would handle it.

      When I went to the board of ed meeting recently, I voiced my opinion about this exact topic. That there is a disconnect. Meaning, this aide was obviously not trained to handle a special needs child. I clearly told the board of ed that the medical community teaches us parents how to handle children differently that the aides are taught at the school systems. There is no coming together to work together on this. But I think it would be a great help if say a parent was allowed to volunteer and teach the aide what we are taught with the professionals who work with our children. Because the schools and medical professionals are not coming together.

      The Board of Ed responded, "if you have a personal problem, you can talk to your child's teacher." Even after I expressed that it's not just my problem. I'm speaking openly about my concerns for the welfare of all special needs children....she failed to see my point! I think she deliberately didn't want to hear my point. She knew what I was saying and just didn't want to admit that the aides lack training and understanding that are working with these precious children with special needs.

    • Shyron E Shenko profile image

      Shyron E Shenko 

      5 years ago from Texas

      Thank you Brandi (CraftytotheCore), When will your son have his tonsils and adenoids out?

      You will see a wonderful difference in him. I hope everything improves and when he realizes that his speech will be different, and your reaction to his new voice, will help him to improve even more.

      This reminds me of a play that I went to at the school for the special needs children.

      I believe in total communications, signing, lip-reading (my son is deaf), anything that gets the point across. In this play the speaker/narrator did not have a clue about special needs children but thought that signing should be eliminated. And unless a person has a child who is deaf or autistic, or has down-syndrome, that person should not speak for everyone else who does.

      It happened that about 10 Children were seated in back of the narrator, and he made the statement to the audience, "sit on your hands and talk to your child." The children were all deaf and they were making a lot of noise, laughing and signing. He quickly turned to the children and put his finger across his lips to 'SIGN' to them to be quiet.

      My point is every special needs child should be treated just the same as a child who does not have special needs.

      ;-) Shyron

    • kidscrafts profile image


      5 years ago from Ottawa, Canada

      It must have been hard on you to see how the teacher treated your son! It almost surprises me that the teachers in private schools treated your son that way because of what I heard here in Ottawa, in private school they have small classes and the teachers are really dedicated otherwise they lose their job! At one point, I was asked to teach in a private school but I refused because I found it to "snobby". I have been educated in public school in Belgium and I wanted my children to experience the same kind of education in Canada with kids coming from all kinds of background... just there, there is a lot to learn :-)

      I think in the case of your son, the teacher had a preconceived opinion about him and his ability and that's too bad.

      When we enrolled our eldest son in his first school (a French school in Ottawa) the principal first refused him because he said he was not speaking French (meaning he was speaking English); we had to tell him... he doesn't speak at all; but he understand everything. So he let him enrolled. We explained that he just started to have speech therapy at the Children Hospital. I must say it took us a long time to be able to see a speech therapist because there was a long waiting list. The good thing was that after that he had no problem at all :-)

    • CraftytotheCore profile imageAUTHOR


      5 years ago

      I know what you mean Sha. But around here, our choices are limited unless I want to have a long drive. Thank you for your helpful input.

    • bravewarrior profile image

      Shauna L Bowling 

      5 years ago from Central Florida

      It may be time to find another pediatrician. I interviewed Christopher's when I was pregnant. My son was born in a birthing center by a mid-wife. I had to have him seen by a pediatrician the day he was born in order to get his birth certificate certified. Interviewing before giving birth was the best thing I ever did. He was great. He'd save me office fees when Christopher was young. I'd explain the symptoms and he'd call in a script. He was awesome. Christopher is my only child. Dr. Gross was a godsend.

    • CraftytotheCore profile imageAUTHOR


      5 years ago

      Hi Brave! Thank you so much for your comments. I can see that you genuinely share my frustrations. What's so upsetting is that my son has had congestion and nasal issues for years. Every time I bring it up to the pediatrician, he says give him nasal spray. Last time it was allergy pills.

      Just recently, I took my son to the school health based clinic. They too said it was allergies! LOL

      All this time, and after my recent PPT, the speech therapist recommended the ENT. I have to say, I love the public school speech therapists. They've really been wonderful advocates for my child.

    • CraftytotheCore profile imageAUTHOR


      5 years ago

      Mel, thank you so much for your comments my friend. They are greatly appreciated.

    • bravewarrior profile image

      Shauna L Bowling 

      5 years ago from Central Florida

      Crafty, my son was in speech therapy when he was in grade school. His dad and I could understand him but no one else could. His speech therapist recommended we see an ENT also. Turns out his Eustachian tubes were blocked and he couldn't hear properly, which is why his speech was so muddled. He had surgery to have plugs put in his ears and had is adenoids removed at the same time. I'll never forget when we brought him home. He went out in the back yard and said "I hear birds!". My heart melted.

      Fortunately for us, the public school system in our area, while lacking in some areas, is very family friendly and will go out of their way to help children with special needs. Not all of the schools are that way. I happen to live in a county that has top rated schools and teachers. Thank God! We parents don't have manuals to consult when raising our children, especially those who have issues that most other kids don't.

    • CraftytotheCore profile imageAUTHOR


      5 years ago

      Thank you so much Alicia! My little boy has had a hard road, more so than a lot of his classmates. But he has become such a strong little boy through it all.

    • CraftytotheCore profile imageAUTHOR


      5 years ago

      Hi Heather! I just watched a documentary called This is Autism. The young man was in high school and has Aspergers. He was saying that he couldn't talk when he was little, but his parents enrolled him in speech. So he said that his words get him in trouble all of the time. Somedays he wished he still didn't speak! LOL It was a really interesting documentary. There were about 5 children profiled. They were going to this special school that was set up like the streets of a real town, complete with shopping centers. They were taught how to live on their own. I thought it was genius.

    • CraftytotheCore profile imageAUTHOR


      5 years ago

      Hi Kidscrafts. Thank you for sharing that story here. You just brought back memories. When my son was in pre-K before his diagnosis, there was a new enrollment in the private school where my son was. It was a little girl. She was older, but she came from a different country. She couldn't speak English. She was not potty trained.

      Around here, it's the law that children have to be potty trained to be in pre-K. She wasn't. My son had issues with potty training because he has Autism, but at the time, we didn't know he had Autism. Anyway, the teacher had told me on a few occasions that if my son had accidents, he would have to be sent home. They wouldn't let the teacher care for him. (This is different from public school. The nurse helps the child. But in private school, they don't have to go by the same laws or policies as public school.)

      Anyway, this little girl had to have a diaper changed because she wasn't potty trained. She wasn't special needs. But, she wasn't able to communicate. Because my son had been having so many issues, and the teacher kept telling me that my son was having issues, I asked if I could sit in on the class one day to observe what the teacher was talking about.

      It was recess. We went out to the playground. It was fenced in. The little girl started to open the fence gate. My son was sitting with me at a picnic table. He jumped up and ran to the fence. He saw that a car was coming. He didn't want the little girl to run out in front of it. The fence gate tapped the little girl in the head and it scared her. It wasn't hard enough to hurt. My son just couldn't get out of the way in time and the little gate tapped the little girl. She screamed. The two playground teachers had their backs turned because they were gossiping the whole time I was there. They immediately yelled at my son and blamed him for hurting the little girl.

      Thankfully I was there. My son started having a meltdown because he was blamed for hurting the little girl when he was really trying to help.

      So I spoke up and told them both if they hadn't been busy gossiping with their backs turned, they would have noticed the car and the little girl about to run out in front of it. They didn't apologize to my son. The same afternoon, my son went in to the class. It was movie time. I sat on the floor. My son sat on a little table with his buddy. His buddy had a lot of problems. (Like he stabbed a child with scissors. Nothing was done because his mother went to the church where the director went.)

      Anyway, the little boy pushed my son off the table on to the floor. I jumped up to help. The teachers yelled at my son and told him to get up off the floor. I said well if you had been watching, you would have noticed that the little boy shoved him off the table.

      I haven't had this experience in public schools. Like I'm saying, this was the private school. It was obvious my son was not wanted at that school by the way everyone treated him. The teachers at the public school are more than accommodating to him, but they have their hands tied by political garbage.

    • CraftytotheCore profile imageAUTHOR


      5 years ago

      Hi Lyricwriter! Thank you so much for your comments. Well, what I came to realize, not understanding it before I wrote this, is that the teachers are really the ones stuck here. Because the state has these mandates. They say that it's the teacher's job to teach all students, even special needs. So, they want to eliminate the aides in the classroom completely because "it's the teacher's job". That was a direct quote from the board of ed. Sickening!

    • CraftytotheCore profile imageAUTHOR


      5 years ago

      Hi Shyron! Thank you so much for your thoughtful and interesting comments. I do like my child's pediatrician, but for example, my son has spent years with speech issues. And I just found out that he has enlarged tonsils and adenoids. They make it difficult to breathe and pronounce certain words. Despite our multiple complaints, the pediatrician prescribed nasal spray. Well, we finally were told to go to an ENT by the speech therapist. We went and found out my son has to have surgery. That's the type of thing that bugs me. My poor child suffered all these years, usual nasal sprays for no reason, because he needs surgery.

    • Mel Carriere profile image

      Mel Carriere 

      5 years ago from San Diego California

      I appreciate how you share your accumulated wisdom in these matters with people in need. Great job!

    • AliciaC profile image

      Linda Crampton 

      5 years ago from British Columbia, Canada

      This is an excellent hub that is filled with great information for parents of special needs children, Crafty. You've raised so many good points. I'm sorry that you and your son have had such a difficult and frustrating time. I hope the situation gets better for you both and that the battle that you are facing gets easier to fight.

    • HeatherH104 profile image


      5 years ago from USA

      Crafty - thank you for your reply and all the information you shared. Please keep writing more on this if you can it is very helpful and great guidance for knowing how to start the process. My son didn't talk when he was little so we started speech but luckily early intervention took care of everything we didn't have any out of pocket expense. My son didn't speak at all until age 2 but one day just started speaking in full sentences. As soon as that happened the speech therapist said he no longer needed service. He hasn't stopped talking since that day! Lol!!!

      I hope your son continues to get the services he needs. I am so sorry for what you've had to go through, it's wonderful you are able to write about it and help others who are going through the same thing.


    • kidscrafts profile image


      5 years ago from Ottawa, Canada

      Some situations can be just deplorable in education. Unfortunately, people at the top don't take enough time to come and see first hand the situation in the classroom.

      I remember one year that I was teaching in grade 5. One of my students just arrived from Somalia and within days, I could sense something was wrong in the way he learned and I couldn't put my finger on the problem; it just baffled me. So I went to the principal to ask for help and have the kid evaluated to get the help he needed. The answer was, we don't have money for that.... and that was at the beginning of the school year. On top of that problem, he needed an eye operation that went really well... thank goodness! I hammered my concerned on a regular basis to the principal and finally, in April (almost 8 months after my initial request) she asked someone to make a kind of pre-evaluation (it was not the regular process and the designate person)... and the guy who made the pre-evaluation confirmed my suspicion that the poor kid had serious problem. I was so mad at the principal of waiting so long to help him that I got sick; I had to take the afternoon of and see my doctor. That kind of attitude makes me really sad; the children are our future. We should take better care of them through the education system and teachers should get the help they need to help those special cases!

      Thanks for bringing that special subject on the table Crafty! It's more than necessary!

      Have a nice weekend with your family!

    • CraftytotheCore profile imageAUTHOR


      5 years ago

      Hi Eiddwen, thank you so much for commenting here my friend.

    • CraftytotheCore profile imageAUTHOR


      5 years ago

      Hi thewritingowl! It is so good to hear from you. I appreciate your comment very much. You hit the nail on the head. Hidden disabilities are the one that are suffering the most.

      I just went to a meeting and met with a few moms of children with Down Syndrome. They could not relate to my story because they didn't have the same experience. From day 1 they received services. They didn't have to fight anyone for their services as I did for my child with Autism. But, now the tides have turned. They too see that it's going to be a battle because their children are going to be denied an in-classroom aide. So ridiculous! But the good news is we are coming together and working through this for one cause.

    • CraftytotheCore profile imageAUTHOR


      5 years ago

      Hi MsDora! Thank you so much for commenting. I think I'll have to petition an act of Congress to get the state to hear me, so if you see me on the news.... LOL

    • CraftytotheCore profile imageAUTHOR


      5 years ago

      Hi Wetnose! Thank you so much for your comments. I really appreciate them my friend!

    • CraftytotheCore profile imageAUTHOR


      5 years ago

      Thank you so much DDE! Your comments are always so gracious and comforting.

    • CraftytotheCore profile imageAUTHOR


      5 years ago

      Brave! You makes some tremendous points here! Thank you so much for your valuable input.

      It is so true. Just when we find one therapist, they tell us we can't see them any more for whatever reason. The children do get bounced around. It's an awful thing for children who need consistent routine and structure. Our first therapist didn't work out because she forgot to show up for my son's appointments. I don't know how people like that keep their jobs.

      I was quoted $15,000 for an pyscho-analysis eval. There is 1 dr who conducts them for schools. Schools only pay for them if the school thinks it is a cheaper alternative than placing the child in a private school for special needs.

      We see my son's psychiatrist every 2 months now. His therapist is every 2 weeks. He also just finished another round 10 weeks of OT.

      The new speech therapist at this year's school said my son needed an ENT because he has a very nasally sound. It affects his verbalization. I just had the appointment at the dr and found out my son needs surgery this month. He has enlarged adnoids and tonsils.

      We too have a huge support system in place. Unfortunately, many parents do not.

      What I'm finding now is the school is all about the school. My input isn't really heard at the PPT meetings. They don't really care what I have to say. Because they only care about what they are going to do and the things they are going to put in place. Whenever I speak out, I'm treated like I have no voice.

      Another thing too is that my son is on medication. The school thinks my son's amazing abilities are due to their teaching. While partly yes, they taught him to read and write which I am thankful, he is medicated. If it wasn't for that and all of the things the poor child has been through, he wouldn't be able to sit still enough to focus to learn anything. They don't give credit to anything the parents do on the outside of school. That's a big problem around here.

      I'm so glad to hear about your son's outcome. It gives me hope to look forward to a future where my son can advocate for himself some day.

    • thelyricwriter profile image

      Richard Ricky Hale 

      5 years ago from West Virginia

      Crafty, another great article, very detailed and informative. I've never been in this position before, but I remember all the special ed teachers that we all had when I was young. There's so many different levels and these teachers are extremely valuable to the one in need and their family. I hate to hear what's going on now as I read your comments. It's a shame, it truly is. Voted up, useful, awesome, and interesting. Great writing on this sensitive subject Crafty, have a great weekend.

    • CraftytotheCore profile imageAUTHOR


      5 years ago

      Hi Cuttler. It's only getting worse in America too. The teachers are now being exploited by the state. The state wants to make it mandatory for teachers to take a class of 24 to 30 students with no in-class aide for special needs students. Ridiculousness! I just heard in a meeting that "it's the teacher's job". It's the children at stake here. And teachers aren't going to stay under those circumstances. They get no help from the school or state. Terrible predicament. Thank you for your input here. It's really treasured.

    • CraftytotheCore profile imageAUTHOR


      5 years ago

      Excellent comments here Tom! You say it best, "Special needs persons are a unique category who make us reflect deeply on humanity." What a perfect comment. I wouldn't be the person I am today if I didn't have a child to fight so hard for. Thank you so much for commenting here and putting your best efforts forth for those that need us!

    • CraftytotheCore profile imageAUTHOR


      5 years ago

      Hi Ben! Thanks so much friend for your heart-warming comments. I do have a lot of passion and fury! LOL

    • CraftytotheCore profile imageAUTHOR


      5 years ago

      Thank you so much EP! However, you fight the good fight too! You do have furry children that need us just as much as people children. That in itself is a battle to conquer. :D

    • CraftytotheCore profile imageAUTHOR


      5 years ago

      Hi Flourish! It's a good thing I'm a tough girl. It takes a lot for me to back down. I'm thankful for that because it has really helped my child. I don't know where he would be if I let it get the best of us. I just put my full suit of armor on and advocate for my child. I love him so much, I can't think of anything else at this point except to tell other parents what we've been through in hopes they don't have to struggle so much with getting services.

    • CraftytotheCore profile imageAUTHOR


      5 years ago

      Hi Joe! Thank you so much for your thoughtful and heart-warming comments. It has been a huge struggle and battle. Somedays I feel totally defeated, until my son says something amazing and I know everything we've gone through has been worth it for his benefit.

      We have a therapist for him who specializes in nutrition as well as behavior. She has taught me about gluten and omega-3 and the important of finding the right diet. We've eliminated sugar. He is also lactose intolerant.

      The teachers are caught in the middle. They are on the front lines. What people don't realize is they have to do certain things to keep their jobs. And it's the state that is mandating and creating these stupid policies. People need to go right to the source. Legislature and congress!

    • CraftytotheCore profile imageAUTHOR


      5 years ago

      Hi Teaches! Thank you so much for your wonderful and thoughtful comments.

    • CraftytotheCore profile imageAUTHOR


      5 years ago


      When my children entered public school, my daughter as in K. There was a lottery for Pre-K and my son wasn't accepted. I pulled my daughter out and enrolled them in a private school. A relative was my son's pre-k teacher. She was not a licensed teacher and she had no early childhood development background.

      My son had a speech issue which I had brought up to the pediatrician. The pediatrician said that he would grow out of it.

      Without my permission or knowledge, his teacher went to the director of the school and told her that I was going through a divorce. The teacher also told the director that she felt my son's speech issue was my fault because of my home life due to the divorce (although she didn't know a thing about my home life. She only knew of my divorce because of my mother.)

      So, the teacher's motive was getting free education from the school. She used my son to say she needed training in speech issues. She wanted the school to pay for it. I was called in to a meeting and the public school from that district offered a free speech eval. I had no choice in this. Even though I had private doctors who gave one opinion, the school forced me to get an eval and threatened me if I refused.

      We got the eval. We were supposed to get a few speech sessions but the therapist didn't show up. When she finally did see my son for the first time, she conducting a session in the school's kitchen. People were coming and going. There was a gym class going on next door in the other room. My son couldn't focus. I decided to pull my son out of that school all together. It was at the end of May. I went to his teacher and said I was going to un-enroll him. She informed me there would be a graduation ceremony and he had practiced for it. I decided to let him stay because of that. I paid my final tuition on June 1. That afternoon the director informed me that she didn't like my son's behavior and wouldn't be graduating him to K. She also wouldn't allow him to attend the ceremony with his pre-K class (even though he had practiced and been fitted for a cap/gown.)

      I homeschooled my children after that. Then we started the process of finding out why my son's speech was delayed. We took him to the Boston Children's Hospital for a few evals. (His dad lives in MA.) They recommended speech therapy 2x a week. I live in CT, so we found a local place. We also had his hearing checked. It was fine. We got a 2nd eval in CT at a hospital. The therapist agreed with Boston. We started speech therapy 2x a week at the cost of $169 each session. Insurance would not pay for it. I went in to a massive amount of debt due to this.

      I asked if my son had an underlying problem. They said no, just speech.

      My son started having other problems. He had oral and visual hallucinations. He became violent. I had to call 911 on one occasion. His strength outweighed his petite form. He was taken to a hospital where they deal with children with behavior issues (mental health issues). The psychiatrists evaluated him and said he has Asperger's. They felt his hallucinations were due to his mind racing all the time and taking everything in at once. During this time we were also seeing a therapist who referred us to occupational therapy. Once again, we found out the insurance wouldn't pay for OT after he had already been going. They won't pay for certain diagnosis.

      The medicine the hospital put him on didn't work at first, so he ended up back at a different hospital. He spent the summer in an out-patient program. The psychiatrist there told me to go to the Board of Ed and demand services for him which he was legally entitled to because she felt he had a learning disability.

      I went to the BOE. They told me that with all the diagnosis we had (Autism, ADHD, and other things), he was eligible for special needs services.

      Also, I had a really hard time finding a therapist after this. The first one didn't work out. I called the insurance company and they gave me a list of approved providers. I called every single one and no one would see us. Finally, I found one therapist who would see us. After a couple of months, my son was aggressive in school but the school refused to acknowledge the Autism diagnosis. There is a state form which asks specific questions. It is put in a way that makes it almost impossible to say yes to. So even though he has an actual diagnosis from 2 hospitals and a local psychiatrist, the school refuses the diagnosis and based their services on what he needs to perform academically. Meaning, they only provide services if it is required to get him through a school day. They don't willingly provide OT, speech therapy, etc. But luckily, the speech therapist said my son can't sit still, he has a phonological disorder, and she really pushed for services. The school agreed to do speech and a classroom aide. He also had a behavioral support team such as a psychologist and special needs teacher in addition to a regular teacher, but they also said I would have to get other services outside of the school. He has private doctors. Then, we discovered a medication called Kapvay. It's for ADHD. It worked wonders. He was able to focus and concentrate. His psychiatrist prescribes it. He takes 2 at bedtime. He also takes Risperdal for hallucatinations/impulse control. With those medications, he has been able to do quite well. This year he is mainstreamed. He continues with speech and a classroom aide.

      His therapist referred us to a nonprofit agency that provides a free care coordinator. She came to my home and did a home check. Then she found out what services he has at school and at home. She recommended additional services. This was after all of the services we had already gotten though. Even though we had gone through OT at our expense for 9 months, she insisted that he go through more. She also made me set up a meeting at the school and she went to find out what they were doing for him. It would have been a good thing if I had her in the beginning. A referral is required for her services, but check your local area for "service of care" or "care coordinator". Find out if you have a local nonprofit agency that helps families with children. We qualified because we were flat broke and in debt. Also, you can call your insurance company and ask for a case manager. If your child has already had services from medical providers, you can speak with a case manager as to what to do now. If you haven't had any services yet, the school is going to bring a budget and a set agenda. They will tell you your child doesn't need services if it isn't required for their classroom structure.

      I stopped homeschooling when the psychiatrist said the school has to provide services. This is a double edged sword. On one hand, had I not had all the diagnosis, my son wouldn't have gotten all of the services at school that he did eventually get. But if I had put him in school, without having a diagnosis first, he would not be getting the services. It's a terrible situation, but that's the reality of it. Also, the medication is important piece. He wouldn't be doing so well today if he had not gotten the right meds. He went through several before they found out which one worked.

      The tough question is where to start! I had no choice. The private school started this before I ever knew there was a problem. They had their own motive. But in a way, I'm glad they did what they did or I may not have a diagnosis still. The reason for it is because the pediatrician never picked up on the subtle clues that my son was Autistic. The only problem he had that stood out was the delayed speech. He was social. That was what stumped everyone.

      My son also has a high IQ. That means, he performs better than some of his classmates. That in itself is a problem. Children with high IQ, i.e., Asperberg's, don't actually have a learning disability! That's why this is all so very complicated.

      The worst part is there is a disconnect between medical and school. The school does things their way.

    • Shyron E Shenko profile image

      Shyron E Shenko 

      5 years ago from Texas

      Hello CraftytotheCore, every parent with special need children should read this, at least once. Your advice is so helpful and needed.

      Pediatricians not only don't know everything, they don't like to be told they don't know everything. To me that could put a special needs child at risk.

      Insurance companies are not in business for anything but making money for their company.

      Voted up, UAI, shared and pinned on Amazing HubPages Board!

    • CraftytotheCore profile imageAUTHOR


      5 years ago

      Billy, thank you so much my friend for your input here! There is a true war going on. The heart of the matter is children. I equally feel as passionate for the teachers. They are the front lines for the children and yet are given the ultimate no win situation from the political powers. Many parents are blind to this. They don't understand it and don't have the time to learn. I've been through this and my hopes is that by speaking out, things will change for the better. But it will take an act of congress I believe.

    • Eiddwen profile image


      5 years ago from Wales

      Interesting and very useful.

      Enjoy your day.


    • thewritingowl profile image

      Mary Kelly Godley 

      5 years ago from Ireland

      Voted up. Different country for us but same struggles, probably a lot less services even available privately in Ireland though. Then the sparse state ones are being cut back all the time. Also its the hidden disabilities like Autism, ADHD and learning difficulties that are suffering the most. Lets face it if a disability is obvious to see it cannot be completely ignored in the way ASD can and unfortunately often is. I know your story well, I too spent a long time fighting and pleading just for a referral for an assessment before I even started with all the rest. Its a long hard road for sure but we just have to plod on as best we can.

    • MsDora profile image

      Dora Weithers 

      5 years ago from The Caribbean

      Voted up! Very helpful information for children with special needs. Hope they take advantage of the information and suggestions you offer. Thank you.

    • wetnosedogs profile image


      5 years ago from Alabama

      You have quite a challenge with the system. Your heart is for your child. You just have to win. Be strong.

      Best to you.

    • DDE profile image

      Devika Primić 

      5 years ago from Dubrovnik, Croatia

      Obtaining Services for your Special Needs Child this is so helpful to the many readers concerned and you have to go through this is such a challenge. Voted up, useful and a must read thanks for pointing out the valuable information which is often so taken for granted.

    • bravewarrior profile image

      Shauna L Bowling 

      5 years ago from Central Florida

      Hoo boy! Where do I begin? I feel your pain. I lived the life for the better part of my son's 21 years.

      When he was in 2nd grade, my son's teacher contacted me with her suspicions that Christopher may have ADHD. We did an evaluation between teacher, parent and pediatrician and it was confirmed. I must say, my son and I loved his pediatrician. Dr. Gross was Christopher's doctor from the day he was born until he was 18. Christopher trusted Dr. Gross and so did I.

      Anyway, enter therapy and meds. At the time my insurance didn't cover ADHD because it's considered a mental disorder; my policy didn't cover it. So I looked to the state of Florida. My son and I would go to the county psychiatric office that specializes in young children. We were only afforded 15 minutes at a time. Shoot, sometimes it took 15 minutes just to get my son focused on the conversation! He was guinea pigged through medication after medication, beginning with Ritalin. At one point we had a real sweet state case worker that would come to the house after work and school to counsel Christopher in a comfortable setting - home. The last time she came it was to tell us she'd gotten a job elsewhere and would no longer be his counselor. This happened way too often. ADHD children, who have a hard time focusing and trusting, do not need to be bounced from therapist to therapist.

      I'd finally had enough and decided to go out of pocket and seek a real psychiatrist that we trusted and would stick with us. I love my son and was willing to do whatever it took to get him quality care. I contacted Christopher's pediatrician and got the name of a specialist he trusted. What a godsend!

      Before seeing Dr. Roberts, it was recommended I get a full psych eval done on Christopher, which I did - to the tune of $2,000 out of pocket! It was discovered Christopher also suffered from Conduct Disorder, which is quite common with ADHD kids.

      In addition to seeing Dr. Roberts once a month, we saw a behavioral specialist every Saturday ($70 a pop, also not covered by insurance).

      Dr. Roberts was a blessing. By this time my insurance covered our visits and the meds, but at the specialist rate ($125 per visit and this was in the early 2000s). Meds were still $80/month with insurance. Anyway, Dr. Roberts not only was there for my son, but me also. One day several years later, Dr. Roberts dropped a bomb: he was leaving private practice and had been appointed director of Florida Hospital Psychiatric Services. I was devastated until it dawned on me that the last few sessions concentrated on me and not Christopher. I asked Dr. Roberts if he felt Christopher was ready to go it alone. He thought so and so did I. However, I could get scripts for his meds thru our pediatrician.

      I must also mention that Christopher and I had IEP meetings twice a year with school from elementary to middle and through high school. It always amazed me when the teachers would thank me for coming. "Why? Don't the other parents attend these meetings?" I'd ask. "You'd be surprised how many parents just don't care and don't get involved in their children's education" was too often the response. What the hell is wrong with parents?? I went thru hell and high water for my son and would do it all over again.

      Fast forward.

      Christopher has been off his meds since two months before he graduated high school and has been fine. If it weren't for the huge support system and the consistency I was able to provide for my son, I have no idea where he'd be today.

    • cuttler profile image


      5 years ago from HubPages

      Am a teacher myself and in my country, the ratio for teachers to special needs students is roughly 1:200. A poor trend and the figures get worse in terms of healthcare and other amenities. A sad trend that deserves global attention.

    • Tom Mukasa profile image

      Tom Mukasa 

      5 years ago from Lives in USA

      I am so happy, you have given me and many of your readers the whole nine yards. It is now a year and 6 months that I volunteer time to work with children and adults 'differently able.' But my reaction will be towards the stigma. I recalled my first 6 months working around children and adults with special needs. I was in one state south before relocating north. I feel we need to also talk about stigma and burn out. In looking at 'people with special needs' (who are differently able) as humans makes parents and providers reflect on four pillars. Special needs persons are a unique category who make us reflect deeply on humanity. These are people who deserve privacy, dignity, respect and unconditional regard given in large doses confidentially. You will agree with me, there are some nasty experiences that test one's patience and confidentiality oath. I recall some pyrotechnics, near knifing and in-the-broad-day-light near bullying tendencies. I recall a little bit of necessary and heavy handed but tenderly given reprimands. This did not in any way make me a 'judge.' There were moments when I questioned myself if, as an assisting person, I did well to let two of my charges have a walk with me in the park. That particular experience ended up ruining other park goers' experiences. Oh! If those eyes that looked at me as I guided my charges were daggers, I would have died a thousand times. I also recall instances of voluntary eviction from two restaurants where I took three other charges for ice cream! There, I noted people literally taking off. I recalled the Biblical stories about lepers and what I read about the treatment and conduct of lepers in those times. Craftytothecore, society should commit to fighting stigma in all its forms.

    • profile image

      Benjamin Chege 

      5 years ago

      Hi Crafty. Informative hub you got here. I like the passion you have when working on such topics. You always do an excellent job when writing about topics of this nature. Thanks for sharing. Voted up, useful and interesting.

    • epbooks profile image

      Elizabeth Parker 

      5 years ago from Las Vegas, NV

      I don't have children, but this is a hub chock full of wonderful advice for those who do have children with special needs. Voting this up and sharing!

    • FlourishAnyway profile image


      5 years ago from USA

      Gosh, what it takes to be a parent and warrior for one's child. It's so unfortunate that you have to do this.

    • hawaiianodysseus profile image

      Hawaiian Odysseus 

      5 years ago from Southeast Washington state

      I think that there are enough parents of special needs children that are as fed up and seriously concerned about what lies ahead as you are, Brandi. I don't know how it will happen, but just as in the case where tens of thousands of people are educating themselves about alternative grass-roots medicines and natural methods of healing, the same may have to occur with the topic at hand. Trained professionals who haven't lost their moral integrity must team up with parental and other social activists like yourself to build core resource centers that are independent of government institutions. AND who don't rob you blind in the process but have a means of exchanging services, supplies, and basic needs in an old-fashioned bartering system. The revolution doesn't have to be violent or can come one step at a time with people who truly care and are willing to invest in and sacrifice for the greater good. I don't have the answers--no one person does--but together, we certainly can make a difference. I feel for you, I feel for my own special needs blood relative, and I pray to somehow make a difference. Aloha, my friend!


    • teaches12345 profile image

      Dianna Mendez 

      5 years ago

      You have stated some very useful and helpful information for parents with children with special needs. I know that it is such a difficult road for parents and the child to experience socially and in educational settings. I hope this message gets out there to many who need to hear your story and how to help.

    • HeatherH104 profile image


      5 years ago from USA

      This is so important! We are at the beginning of this with my oldest son as you know. My son sounds like your son - very bright, eager to learn, but can't sit still and does a few other things his teacher can't stand. He's in a very bad situation with her now. We are looking at having him tested for gifted and the school wants to bring in someone to look at him as well.

      I'm so broken up about this which I'm sure you relate to.

      How do you find out about a care specialist and what exactly do they do?

      If it's not too personal, we are considering home school, why did you decide to stop home schooling?

      Please keep writing about this. Parents need to know everything is a fight.


    • billybuc profile image

      Bill Holland 

      5 years ago from Olympia, WA

      The undignified process....that subheading really says it all, doesn't it? I feel your pain; I hear your anger; I respect your passion. The shortages and inadequacies concerning special needs children in society today are criminal. I have seen it firsthand as a teacher and it is unacceptable. Keep speaking out, Brandi. Raising awareness is the first step towards change.


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