How Do You Raise a Child With Autism?
How Do You Raise A Child With Autism?
I have already struggled juggling being a Marine wife of an Non-Commissioned Officer (NCO) and holding down a full time job. The only time I would ever have considered being a stay at home mother was if I had a child with a disease that was terminal; or one that needed around the clock care that we couldn't afford a nurse to come and help. The towers falling the year I found out I was pregnant kept our Naval Air Station in Lemoore California, locked up pretty tight. Two days after they fell voila; pregnancy number two. Due to the eight hours to get on base and all the increased security I had to quit that semester of school and I wasn't very happy about it. I always did something...I never JUST stayed home. I was desperately searching for an answer of some kind and later had the same husband leave for AIT for the Army after our tour in the Marines was over.
I worked full time while he was gone and juggled that schedule around doctor's appointments three days a week trying to find a doctor who would assess my son Andrew ( now three years old ) for Autism the correct way. Battling self-harm violent tantrums, battling over the top picky eating, and struggling to get him to stop banging his head to a bloody mess on my own. I had three kids at this time and the entire family refused to help. They figured it was my bad parenting or I was neglectful that I just couldn't handle the stress. When his Physicians Assistant said that she was confident it was Autism I remember crying hysterically on the porch with my husband in Virginia. He didn't really believe it. Little did I know he never would and that the journey was mine alone. My family even turned against me at one point. His father never accepted his diagnosis until two months ago November 2010.
The day came as it will, or has, for a lot of you the day you remember as clear as September 11th "your son has autism" day. I don't know what anyone else's first thought was; mine was "ummmm...now what?" Right before hysterically collapsing on the front porch. I hope everyone else had supportive spouses who went through at least most of the process and that even if you were divorced you worked together to provide the right interventions and services as a team. Not for me. I fought for custody where they raised him (new wife and ex husband and she lasted two years at best) that he was normal and she spanked with a belt and he wasn't allowed to do anything. He virtually seemed a little robot. They were all about using the Autism to keep him with them, however.
I kept my custody though and never has he left without me again. Never will. The family on his father's side still doesn't accept the fact that I was the only one these kids have had and that I was the one that changed my life around and sacrificed everything for that little boy. He is the god send parent. Yes, I am still a bit bitter even though I shouldn't be. I have lost so much.
I didn't have the access to the services and interventions or even the right doctors; not in Crescent City, CA and not in Killeen Texas at a school that failed my kid. I didn't know how to do IEP meetings or to keep everything or what the legislation was. Heck I couldn't control my own autistic son who had started running off naked now. Refusing to potty train until he was six and talked after five and a half. I had no clue about ABA therapy or Educational intervention and the right assessments I should have asked for. I didn't know what doctor to take him to and no one listened to me anyway. I think I gave up and let him run me for a long time. But after getting to Germany and re-married to my second husband I may have struggled while my spouse was still deployed for fifteen months but when he came back he taught me more about being a parent of autism then he probably knows as my ex-husband now. Andrew didn't really get better because of me; the school taught him the techniques.
This is where I learned how to raise a child with Autism. What to do and what not to do. How to manage Sensory Integration. The most affective way to work with a school and how to communicate with him. To be the mother that was going to bring him into independence and finally have expectations of him that I never had before. That is when I joined support groups, went to meetings, and used the EFMP ( Exceptional Family Member Program for the armed forces.) When I demanded answers and would see one doctor or another until someone did something.
Onto my ideas, strategies, tecniques and what not to do that has worked for me. Keep in mind every child is different and I will give my best advice on my experiences to help you figure out what their needs may be.
Hopeful Prognosis Today In Autism
Today the prognosis for Autism is hopeful with early intervention you see definite progress; sometimes so much so you could be speechless. We tend to have the older mentality when we hear Autism and are afraid to hope or set any expectations of our child's future; but, early intervention and the introduction of Applied Behavior Analysis (ABA) is very effective. Accepting the diagnosis is the first step in raising an autistic child. Actually; its the most important step in my opinion as you can see in my journey with Autism and a father for my child that waited until he was nearly nine years old before acceptance. As OAR points out; acceptance will come so let yourself become comfortable with the diagnosis first, or at least, accepting of a different way your life will be headed from here on out. With his father not accepting the diagnosis; he refused to change his parenting strategies that held our son back and sometimes caused regression. It made his sensory integration worse and he was not capable of functioning in the classroom.
OAR is my personal preference if you haven't figured that out yet as it does provide military families the resources and support that I didn't have and respect them for really seeing the necessity of their work. Information and ideas are excellent and have been ones I figured out on my own. Overall though, I like the motivations throughout any of their guides in publication. They understand our emotional reactions because staff members have spectrum kids as well and thus know what is in for our child. Most of us are given very limited information and we feel many times "What now?" I think its a new syndrome that should be in the DSM 5...Autism what now syndrome. Denial is also a common reaction and a sort of grieving process is expected. Autism, whenever diagnosed, is the beginning of a journey that is unique from anything you will experience. It is also one that is critical for parents to learn how to deal in a positive way when coping. You will be responsible for being resourceful and your child's advocate. To find support that will lead into a good adjustment.
It has been proven recently that early intervention is a necessary step to give your child the best prognosis possible and progress has been proven to be notable in those that obtain the early intervention as soon as possible. (For the Army contact EDIS on post which is your Educational Developmental Intervention services. I worked as a mentor for a few months in Germany for families newly diagnosed. Its a great program that does the speech evaluation in your own home and observes your child in his or her own surroundings.) The aspect of treating Autism that can be overwhelming and stressful, that OAR points out, is it involves more then one treatment and normally an intervention team is highly recommended. It includes a variety of providers (military I had my pediatrician EFMP special trained, our clinial psychologist, the speech and occupational therapists etc). This is actually recommended by AACAP according to OAR.
When a team is formed for a child with autism it really provides a recommended group struture with the most functional and well trained individuals; providing a well rounded ranged of expertise and services. With all the interventions that are availalble as well, you have nothing but the best start in order to start listing your hopes and your dreams again.
An expert and experienced individual should be responsible for the entire team. They are in charge of developing the overall program tailored directly to your child's needs. They should organise details and also advocate you child's program; being observant of the program's entirety. Here is a list of recommended professionals that would be a good asset for such an intervention team:
- Developmental Pediatricians
- Child Psychologists
- Board Certified ABA analysis therapists
- Special Education Teacher's preferably certified in Autism or very experienced
- General Education Teachers with experience
- Occupational and Speech Therapists
- Physical Therapists
Once a plan is in place ( keep in mind to be flexible because not every child responds to the same therapy the same way; it may not work for one and work for another so change may be frequent until you find what works for your child). You have a little bit of a solid foundation and a starting point leaving that black hold of unknowing what to do behind you.
Step one is now behind you; on to step two.
Step 2: You Are Really Never Alone
You need to know what I didn't and that is even when, like me, your family isn't there to pick you up and not there to hold you when no one else is and they judge you. If your husband can't deal with it and your marriage goes to hell like both mine did and you feel hollow and helpless you really aren't alone. You have the strangers at organizations like Defeat Autism Now, Autism Speaks, and Operation Autism Research. Strangers with a personal investment in the cause of Autism and strangers that wrote publications designed just for you by people knowing the same things you will.
You have the online autism community; and you will see many reach out even in your own area. You have support groups and you have the special needs parents at your school or at the local chapters. They will all have ways to try and give you advice, they are all non-judgemental in a way others can't be. They don't see a disorder in your son and you need not feel embarassed when your son acts goofy to another but a shining star to the community that their hearts will all connect us through space and time. You may have an issue you can't solve, you are at a loss and feel there is nothing left; but there are people out there like me who are experts through self eduction, their own college education and their own battle through their journey. People like me that won't let an answer go unanswered...that will give you what you need as information via net if we have to; or do what I do and be on speakerphone as an advocate for a stubborn and unaware school having your IEP meeting and denying you what you need. I work eighty hours weekly for free doing this and I won't change that. I will attend doctor's appointments and if I really need to I will ( assuming I can afford it ) fly to someone. Thats me and if there is one of me there is more.
You are your son's first and only advocate because you know him best. When you are in this for six years like me you will look back and find yourself making time to hold out your own hand. To aide another family through. It may not be cureable per the textbook definition but it is reversible and it is a journey and it will be hard and you will feel defeated and you will want to give up but you will also change, your child will shape you into a person you never thought you could be. You will look in their eyes and see their confusion and you won't stop until you fix whats broke. Autism mom's are superheros...ask my Autistic son. I am Dr Mom.
- Be Patient
- Understand the motivations behind the behavior
- Anticipate their needs
- Routine and Repition
- Transitions and Warnings and Preperation
- Social Stories and Visual Schedules
- Accomodate their needs; you will change your whole parenting style and your home and adapt to them in order to get them to adapt to you
- see their strengths
- Give praise
- Always offer a positive when you offer a negative
- Accomodate their sensory issues
- I believe in trying to keep them off all meds until they can learn a basic way of being and acting
- Reach out
- Self educate
- Be an avid listner and particpant
- Fight for their needs
- Advocate awareness
Be all you can be better then you were before. Be proud of every little accomplishment and don't settle for less then either of your best...Pretty soon you are laughing at things that annoyed you can smiling when you yelled.
"Speak Autism" while you reach in to take their hand to guide them to our world...spend some time in theirs.
© 2011 Abby Malchow