My Down Syndrome Life
Isabella Wishes You Well
Downs and the Playground
There isn't anywhere a kid loves more than a playground, especially my Isabella. Since we spend most of our time at a softball field with Ally, when it has a playground that is a double bonus for Isabella. She is now six years old and looks like she is four years old and still a toddler. She still wears a diaper because she is stubborn and will not potty train. She is just now reciting her ABC's and starting to count to ten. Will she do it? I have no doubt, but in her own time. You can still her mind calculating on most things and figures out how to do things that amaze me. The issue I have is that my eyes are very slanted due to my Native American heritage. I've always loved my eyes and Isabella with her Down Syndrome, you don't know if she has them because of the Down Syndrome or because she inherited them from me. Regardless she has beautiful eyes. When we go to the ballgames and there isn't a playground, Isabella loves to spend her time climbing the bleachers and cheering on the team. Two of the dads taught her to yell Go Bulldogs! So now even if a Cubs game is on, she yells Go Ally! and Go Bulldogs! It's adorable. She is also a people person as many DS kiddos are. She loves to go around and babble to people and since she signs more than she talks, she many times takes their hands and plays with them as if they are signing. Many people enjoy their interaction with her and as long as it doesn't bother them, I allow her to socialize. There is always that one mom though and this was our assistant coach's wife, that I will delightfully name Bubblewrapper mom. She made every ballgame miserable because she would make snide comments on how I shouldn't let Isabella talk to strangers or play with their hands because of the germs. Most of these supposed strangers were the parents of the team, but I ignored her. Then if there was a playground, the kids will be mean to Isabella because she is different. One time they played the cooties game against her and I had to remove her from the playground in tears. Then there is always that parent at the playground who lectures me on etiquette for my child because Isabella gave their child a hug and it suddenly becomes Isabella pushed her. Or it is that mom who has jandiwipes out and every few seconds is cleaning their child's hands at the playground. Fact is people, kids get dirty and that is what the bathtub is for when they get home. I allow Isabella to live fully and if she gets dirty at the playground so be it. She loves the bathtub even more when she gets home. I always love having that lecture with playground mom though and explaining she has DS and seeing the expression on their faces. They usually remove their children from the playground then because their children can't interact with someone so vile. As if and get a life. A one ballfields, a huge group of kids were running and playing tag. Isabella wanted to join them. They ended up excluding her because she looked different and was wearing a diaper. It was 90 degrees outside and because of sensory issues and the heat, Isabella decided to strip down to just her diaper. Not a big deal, I've seen other kids do it. Being left to her own devices, since the kids were ignoring her, she found a dirt pile and began playing in it as if it were a san pile. She found a stick and used it until a larger child came by and took it from her. I sent my husband to retrieve it back for her and the child replied. she doesn't understand anyway. Really? She is crying, I think she understood. Then another mom yelled at Ally's softball coach's wife (not Bubblewrapper) about how inappropriate it was that she was in a diaper and playing in the dirt. The coach's wife explained about Isabella and her DS. Let me add, I really like this coach's wife. She is the bomb diggity. Anyway, this mom ended up apologizing to her, not to me though. The moral of the story is that no one knows what is going on in anyone's life completely and many people are sticking their noses into other people's lives and complicating them too much. Obviously these kids could use a mom looking into their own lives rather than my daughter's rather than making her a target because she is different. Oh and because I stood up for my child with bubble wrapper mom, yeah every word out of her and her husband's mouth has been I am cray our insane. They have proceeded with text bullying, social media bullying, use of girls on the team bullying, and even set a fake Facebook site up to harass my family and ruin Ally's chances to play softball now and in college. I ask, who is the insane one here. What I would like to know is how everyone else's experience is on the playground with their DS kiddo or in public. I'm really interested. Comment below. If there is a topic that you would like for me to write on, please share it below too.
The news the child you are carrying has Down Syndrome
Thanks and Thoughts
I know I haven't written on my blog for quite awhile and I am thinking of starting a new blog that is more inclusive of all disabilities and not just Down Syndrome. I stopped because I thought no one was reading my blog and I found out today that wasn't true. So thank you to everyone who has stopped by to hear what I have to say!!!! I want to keep this blog open to just present what I learn along the way with my daughter with Down Syndrome. So today's topics are what Isabella is up to these days and again education and a new group I am trying to form.
For starters, Isabella is doing great. She is very precocious. The school system evaluated her and she is operating at a 3 1/2 year old level and she is five. So no surprise that she is in that toddler phase where she has temper tantrums and is testing mom and dad's mental capacity to see how much they can take. Luckily she still looks like a toddler at 3 1/2. She adorable! Please don't think she isn't smart mentally though. That child' brain is working like a velociraptor and you have to be one step ahead of her. I truly think she could work at a 4 1/2 year old level if she wasn't stuck in the toddler phase of stubbornness. I teach her her ABC's and numbers and for the love of God she won't state them back to me. Then she'll be playing with her dolls and I will hear her reciting them. It's hilarious!
Here are a few things that you parents out there of DS kiddos should note. I really wish the group we have met would let us know these things ahead of time instead of researching them on the net and finding out post facto. That is why I am sharing them here now with you.Isabella is not potty trained yet although that is a continual effort. I was told by some other parents that they typically potty train around age 7. Two, they love to flee from the house and go on adventures. Isabella has done this to me once and I am so glad that I have very fast teenagers in the house. I have global psoriatic arthritis and well these days I am about as fast as a sloth. Yes they can work door locks very well and are always studying you. So door alarms and chain locks are a parents best friends. There are many other items out there that help too! Isabella'a new thing is cussing. I know we are not saints around here, but it isn't like it is rap daddy mode around here. If it is a bad work, she picks it up faster than lint and she goes on and on with it. I've tried everything from time out on to stop it and it hasn't stopped. I have five children and they all usually go through this phase, but a little time out usually stops it along with soap. I put a drop of soap on a Q-tip and let it soak in and gently took their tongues if time out didn't work and they always stopped. Not Isabella! The next time she cussed, she went to the bathroom, climbed the bathroom counter and started to pump the soap into her own mouth. That was a nightmare. Another item to note is that DS kiddos may have sensory issues. Isabella is hypersensitive. I was accustomed to these issues from my son with autism , but he is hyposenstive. Isabella didn't like hair brushes or baths for the longest time because they didn't feel good to her. Bathing or brushing her was like a feral cat getting bathed. The occupational therapist had me get a rubber brush from Wal-Mart. I found it in the pet aisle for getting dog hair off your clothes . You run it gently down her arms to the palms front and back, legs to the soles and the front and back of the torso. Firmly enough that it doesn't tickle, but not hard so that it hurts. She loved it. Whatever it's magic properties, she loves taking a bath now. The hair brushing we are still working on, but it is better too.
Now onto education. I keep hearing about how public schools need more money and the grading system, tests. Politicians are out of touch and they just keep listening to school administrators asking for money which translates into film flam fronts to show I am trying while it really funds raises and what not. Here is my post on Facebook yesterday about the state of education today.
I put a side note here about our educational journey that many people don't realize. Besides the discrimination and lack of resources provided, it is hard to find the right educational fit sometimes. Many public schools don't like to label children because then they would have to provide resources or they like to label them to get the money and fail to provide the resources. Or they force good teachers to have to provide these resources with no help whatsoever. Parents have to accept the consequences and may have a child sorely underserved and graduating with a second grade reading level or various items. Many of these children now are being funneled into one school so that the entire system doesn't get a failing grade and then let the state privatize the school. Or the kids are forced out to schools like the online public schools. The proportion of online public schools that have a high percentage of children with IEP's are staggering. No wonder these schools have low grades. Students are new, parents are learning to be learning coaches, plus work, kids are adjusting to a new school environment and are getting resources for the first time. They are catching up for years of education lost. Then they are expected to go in and take a test and be just as good as any other non-disabled child. Public schools are becoming ivy league schools for the non-disabled and Brown v. Board of Education is going by the wayside. You can't expect these children to excel right off the bat when someone else has failed them for years. Yet these schools and parents who are party to this action are the first to point the finger and whine about the loss of dollars going to a failing school and now their child doesn't get to take the pottery class they want. Poor them!!!! Legislators on a state and federal side need to hear this story. Here is where the education system needs to be fixed. Public schools shouldn't be in such a position, school choice should not be in such a position. The bottom point is do what is right for the child and that doesn't always mean you have to throw money at it. First is this stupid grading system and privatizing public schools. Sensor them, give them help. Promote schools that are working and enforce the resources when others fail to provide them. Parents should not have to pay $5000 for an attorney then pay out for all the experts and go bankrupt to sue the school when a child is beaten by a teacher for their disabilities, the school fails to protect them and to provide resources while their tax dollars are paying for the school's attorney and all of the experts. Teacher's unions need to stop protecting bad teachers so that good teachers can have their jobs and keep these people from besmirching the good teacher's names and professions. And last of all the federal laws need to be upheld. prime example is my daughter. I hold in my hand a letter from the US Department of Education to the Office for Civil Rights that states when a child has to seek alternative education at another school because the public school failed to provide those services,i.e. an interpreter for a child who is deaf, and said alternative school does not provide sports and the child is capable, then the child has to be allowed to play at the public school. The IHSAA got it and gave her a letter of eligibility to play, the only thing stopping her is the school districts. Everyone including their lawyers keep looking at the state laws when they need to read this letter and look at the federal laws.It specifically states that it supersedes any state laws, athletic association or school rules. I keep thinking who wouldn't want a softball pitcher who can pitch 65-70 mph, has hit 26 over the fence home runs and has many other skills. So what you are not getting her federal tax dollars as a school, you are still getting the state allocated tax dollars for her and you don't have to pay for the expensive interpreter for her education. You are going to garner athletic monies when people come to watch the games and your hearing students are going to have colleges come and look at your daughters more. My daughter has seven colleges after her right now without playing high school softball. The bonuses are endless, you just need to remove that mote of prejudice from your eye and do the right thing. Racism and prejudice still live today and unless someone fights for the premise of Brown V. Board of Education it is going to be trampled and be nothing more than a piece of paper in a law book. This action was so much more than just gaining equality for people of any race, but also for many people with disabilities. Yet parents have no problem stating in newspapers and on public forums, "What do you expect, everyone to learn sign language, so they can talk to her?" My response is one she reads lips, you and your child have been doing sign language on the field for years thanks to Mr. Hoy, and why do you need my child at your school and her tax dollars? if you discriminate against her now that way, how much so when she is a student there? It is just an elitist and racist attitude than needs to be changed. Then again the school rep. sent me an email that stated that unless you are enrolled you are not entitled to anything under Title II or 504 in their school. So if you go to an athletic event, you are not entitled to the handicapped bathrooms or rails by that reasoning. A home school student has to be serviced by the school if the parents request testing for Autism or reading recovery et al and they have to provide it. How is sports any different? If it bothers you, then maybe the federal and state tax dollars need to be carved out and athletic leagues created by county to promote athletics state wide for all children. Make it fair and promote wellness.
Anyway, that sums up my educational point for the day. Instead of throwing money at the schools to be wasted, let's get grass roots and fix them. Politicians need to stop and talk to all parents, not just the traditional public school parents, because let's face it, home schoolers, online public schoolers, all of us are tax payers.
Well once again, thank you all for reading I will try to post here more frequently. Look for my new blog in the future!
Assimilate or Else
Anybody that follows my blog knows that I fight for my children and other people with disabilities. My daughter who has Down Syndrome is still little and the jury is out on what her interests may be. She tried a little dance with her older sister, Meaghan, and she shows the proclivity to have a great arm for softball like my other daughter, Ally.
When it comes to extracurricular activities, we all bring something to the table and different thoughts and abilities. The same goes for a child with a disability, but many people don't see it this way. Everyone must change to acclimate with the non-disabled or else. Recently there was an article in our local newspaper about Ally trying to play softball at a local high school. A parent stated, she wants us to bend over backwards, now is the team and coach expected to learn sign language so they can talk to her,. Now legally the school should be providing an interpreter for her, but the article stated she lip reads and gets along fairly well in tournament play. Needless to say, this is an example of the intolerance of people to deal with anything that is different from them.
Now everyone that loves baseball and softball knows about the hand signals in the game. Where do you think those signals came from? Well, there was a professional baseball player by the name of Dummy Hoy who was Deaf. He developed those signals so he could function in the game and they have been used ever since. So to that parent that was so afraid that his child would have to learn sign language to play the game, they have already done so and have been using it for years. It is strange how life comes back to haunt you when you speak without knowing.
House Bill 1047
This past year has been a whirlwind with my daughter who plays softball. We had talked to our local high school athletic association in early 2013, who agreed that her school was an innovative school and that she could play at the local high school. Our local high school refused to let her play based on their rule that enrollment is required .Under Rule 12-4 of the athletic association ,that allows the children to play if they are enrolled in an innovative school, they can be refused by the local school. So we looked to moving to the other school district , who agreed to let her play.
In the Fall, the athletic association had a change of heart and decided that Ally's school was not an innovative school. After a brief battle with the help of a Deaf Rights Attorney and an Education Rights Attorney, we received a letter stating that Ally was eligible to play under Rule 12-4, the Innovative School rule. This was great because it allowed all students in Ally's public virtual charter school to be recognized as Innovative school students to play sports. The caveat lay though in the rule itself that stated that the schools could say no and most if not all do say no.
We in turn turned toward the US Dept. of Education because Ally's choice of school was due to a lack of services, namely an interpreter, being provided to her in school. We were then given a colleague letter from the US Dept. of Education to the US Office for Civil Rights that stated that the Section 504 ADA laws supersede any state laws, athletic association laws or local school rules. When this was presented to the school, the Special Education Director, in email stated that my daughter was not entitled to anything under the ADA laws unless she enrolled. The colleague letter states otherwise. This is like a business refusing to put in a handicapped accessible bathroom or a wheelchair ramp, because a disabled person may or may not come to their business. Businesses don't have this option which means the school does not either, but they had little regard for the federal law.
Now bear in mind, the state law, states that virtual public charter schools in our state( states in the law itself)f that it is an innovative choice for students who are not thriving in a traditional environment. Many of the kids in our school are like my daughter. Disabled students who were conveniently labeled, but then denied services and left to struggle. Now follow the numbers. A non-disabled student in school is worth about $5100 in federal dollars to the school. A disabled student can be worth upwards of $7000 or more. Now if the school labels the child, receives the money and refuses to provide the services they are legally bound to supply, where is that money going? Now brick and mortar charter schools are receiving only 90% of that standard amount and virtual charters are receiving about 75% of that amount. Now the state tax dollars off of the property taxes are going to the local brick and mortar schools.Not to the charters. Now there are several students that are not attending their schools, not receiving services and yet they are receiving those funds. Then add in all the people who do not have children, whose state property tax dollars are going to the local school. Our school district just had a group of parents raise an additional $650,000 because of a deficit in the schools. Plus the school cut teacher's jobs and other teachers are now doing double duty. One of these parents attacked me stating they did not raise this money so my child could play sports at their school for free. I stated the above and how I had paid for her to play already. I redirected their attention to the fact that they needed to spend their time auditing the school system who has so much funding coming to them, is not providing services required by law and then is still short money. She had no response, so I do believe her thoughts were directed elsewhere. A local legislator also brought up a good point in that athletic events bring in big revenue with winning teams. As students with great sports abilities may be overlooked from a charter school that help generate revenue if the local school had a great team.
Now bear in mind this could have been stopped if the athletic association had simply removed the clause that the school could say no. This Bill would have been unnecessary if the local school had yielded to the federal ADA laws, but we nevertheless started contacting our local legislators who drafted House Bill 1047 that I have now dubbed Ally's Law in our house. It states that the schools would have to let the virtual charter school students to play sports (at least try out) . I am very thankful for such proactive and caring politicians. The Bill as of this date has passed the House Education Committee and the House vote and is now in the Senate Education Committee. I hope that by July 1, 2013, Ally's Law is in place.
It is extremely unfair that a school system is allowed to receive our federal and state tax dollars for services for the disabled and then refuse to provide services. To be administrator heavy and teacher short to the point that the teachers don't even have the time for these additional services if they are offered. These kids suffer and as my child was, struggling and then bullied because she requested help. These children are marginalized by the system and then thrown out. Then spat on again because they want to play sports like their non-disabled peers. My daughter has hit 23 over the fence home runs since last summer, and pitches at 66 mph. She is no slouch at softball and is quite the athlete that would be valued on the team.
Now the next argument was that she would take the place of someone who goes to the school which wasn't fair. Now bear in mind, many brick and mortar schools have created their own innovative schools. These schools fall under Rule 12-4 of our state athletic association for their students to play sports at the local high schools and they are allowed to play. Now my question is that under state law, how can you allow one innovative school student to play and not the other other innovative school student. Answer is that you cannot and the school has violated the law once again not including the fact that they are cherry picking and marginalizing students again. So spots have already been taken away from these students by innovative school students.
In closing , all of this takes us back to the 14th amendment of the US Constitution and the lawsuit of Brown vs. the Board of Education. All of this had to to do with separating people by the color of their skin and this was in schools. Sadly we are experiencing a discrimination of our disabled children now. Within that amendment it states due protection for all people from agencies that receive federal tax monies. This is the case with all public school. Public schools are one of the most public funded agencies we have, yet they act as if they are a private business entity above the laws of the United States and the states. They fear the loss of students to charter schools, but like most businesses, when service is poor, the business goes elsewhere. When service is good, you have return business that thrives. It is time that brick and mortar school systems realize they are public entities bound by the laws of our land. When they get back to education and stop worrying about the money, it is my belief that the money will come to them and students will return. One way of showing this good faith is by allowing these disabled students who have left to play sports. One good act, may lead to another and the student may return. One will never know until they try. Just my honest opinion.
The Coca-Cola Super Bowl Ad
Many of us saw it on Super Bowl Sunday, the Coca-Cola commercial where several people sang "America The Beautiful" in several different languages. Today it was discussed in my son's English class and it was interesting to see people's takes on it. The kids saw an article on the commercial where a man quoted Teddy Roosevelt stating that if you came to this country you should learn English within five years. That you have chosen to be an American and it was necessary for you to acclimate and not the other way around. Then the kids saw a news segment where the anchor stated nowhere does it state you have to change your language to be an American. The kids then debated their views on the issue. One child adamantly stated over and over, you are in America, speak English. They felt the ad was an abomination and adulteration of the song. Other children felt that it was beautiful and it represented the various people who have come to America and albeit of another culture are proud Americans. The vehement child then responded that it meant nothing because they didn't understand the words. The teacher then stated that she understood what was going by the melody and knew what words were going to the song in English even though they were being spoken in another language.
My son then thought and responded to this child that his sister was deaf and since ASL was her native language, she would sign the song rather than sing it verbally. Since she was singing it in a different language, would she be any less American? The child's only response was it was American Sign Language and it was okay versus using another form of sign language. They admitted they still wouldn't know what was being said, but it was okay because it was American.
This was a very ironic response because their whole premise was that since they didn't understand what was being said it was unAmerican. That being said, i completely understand there being a universal language for a country. If I went to Turkey or France, I would need to speak their language to transact in their society and so English being the main language of the United States, I think it prudent for immigrants to learn English. That being said, i do not think that they need to give up their native language. It is as a part of them as their skin. If they wish to show their pride singing "America The Beautiful" in their native language, I think it embodies true patriotism as they are showing pride for their new country. It gives others the opportunity to learn a new language or to sing one of our favorite songs another way. It is just scary, that the imperialist attitudes of Teddy Roosevelt's time are still prevalent today and are being taught in children's homes today.
Judged Or Be Judged
Happy Holidays to everyone! Is it just me or do the holidays this year seem to be harder than the ones from the past? I am thankful for the help I received this year because it means a lot to my family and goes a long way. The interesting piece that I saw throughout the holiday though is either the extreme goodness in people or the extreme nastiness. There has not really been an in-between. The part that I want to address is judging people based on their disabilities. It is interesting that we went to a party recently where my very rambunctious 4 year old with Down Syndrome was judged by a fellow member with Down Syndrome. It made me realize how ingrained a custom it is to us being human and how hard we have to fight the tendency to judge. Then I took my daughter with DS to a local Santa party. My son with Autism was overwhelmed and had to take frequent breaks from the party. I have severe arthritis now that is eating away the cartilage in many of my joints, so I have to have help from my children to manage the rambunctious 4 year old unfortunately. Isabella was very tired and she was impatient to see Santa. She cut through the line once and hugged Mrs. Claus, who only pushed her away and told her to wait her turn. Isabella was hurt and really didn't understand what was going on. We got back in line and she ran out of it again. We had to go to the back of the line and my other kids were nowhere to be found. I became tired and we left, never seeing Santa. I reprimanded my kids for not helping as they were gone for over 30 minutes. Other parents thought I was horrible and only one kind man offered to let me have his place in line. I thanked him, but told him it was best if we left. No one offered to help, but plenty were there to judge me. This was our only chance for a free picture for Santa and it was gone. Not to mention it cost $1.80 for that hour and half just to park for the event and I had to borrow a car because the engine blew up on mine this month. Everyone looked at Isabella like she had something wrong with her. As I said, everyone was quick to judge, but you never really know what someone is going through and your kind word or help may have gone a long way with me that day. I know that the father who offered me his place in line, I will never forget his kindness. It reminds me of the Bible quote from Hebrew 13:2 where it says, "Be not forgetful to entertain strangers: for thereby some have entertained angels unawares." Sometimes those angels touch our lives like the man who offered me his place in line or maybe Isabella was that angel that many people judged and failed to see the goodness in her heart. God will only know.
Funny Things Kids Say
Life can be so hectic sometimes that it is hard to find a moment to just have fun. Sometimes the most fun for us occurs in the car on the way from one event to the next And my jokesters can make the event fly by. So here are some of the things my little mischief makers came up with. Enjoy the laughs because I know that I did.
For the past week, our service dog , Rembrandt has been named Professor Poops. My son states it is because he is supposed to be so smart and because his back end has been on overtime here lately. So today in the car, the dog moved to the front row and you could hear my son and one of my daughters say it stinks back here. My son says the dog farted back here. Meaghan states "No, that is not a dog fart." Andrew replies, "Yeah because you are the expert on dog farts." Meaghan then replies matter of factly, " I am. And his farts smell like liver and onions." My daughter, Ally, then states " Okay, that is just gross. You're dissecting farts now." And it ended with a name change for the dog to Professor Poots.
Another conversation in the car involved me saying I'm not throwing him a pity party. My poor hard of hearing/deaf daughter. , Ally, speaks up and asks, " Why are you throwing a titty party?" She hasn't lived that one down yet.
Meaghan sees a carpet store and asked why people would just buy pets for their car.
And last of all, Isabella threw her $120 Nabi out the window onto the highway where the semi ran it over. I don't think they covered that under shock resistant which obviously wasn't the case by the number of pieces it was in when I stopped to hopefully get it back. In my dreams.
Then of course,of all the songs that play , it has to be the one with a bad word which all kids hone in at once. With the windows down, waiting at a stoplight and Isabella simply looks over at the person in the lane next to us and repeats the word. I've never prayed harder for a green light in all my life.
Anyway, as I have said, we spend our lives in the car sometimes and they can be our funniest. I hope you enjoyed our slice of life today., Until next time...
Joan Gavin Creech
With Sadness In Our Hearts
I began this post with sadness in our hearts as I start to tell you a story of loss and of strange events regarding my little sweetheart, Isabella. Isabella is my daughter with Down Syndrome that does not let anything keep her down. Right now she is four years of age and is communicating at about 3 years of age. But don't let that keep you to thinking that her brain is working at an age 3 level and this story is about to tell that tale. Bear in mind, that Isabella's paternal grandmother, Joan Creech shown above, has never seen Isabella except in pictures, nor has Isabella seen her.
The other night, Isabella awoke from a dead sleep agitated and ran into the living room where her father and I were talking. She kept pointing to the ceiling and saying "Look, Look!." When I did not look, she put her little hands along my jaw line and gently pushed my head toward the ceiling, then pointed and said "Papaw!" The she signed the color green and kept pointing in that spot and saying papaw. My husband and I had had a similar experience once before with our daughter who is deaf, Ally. We knew we had just had a special visit and were waiting for the bad news. In the morning we received a call from my husband's father that his mother had died. It took a bit by surprise as we were expecting some papaw news, but then we remembered that isabella sometimes mixes up papaw and mamaw and mom and dad.
So it is with great sadness that we say good bye to Joan. She had a great love for people and was a wonderful person and nurse. No sharper or more respected mind could be found in nursing. I was proud to be called her daughter in law and to have been a nursing colleague with her. She cared for her children deeply and her grandchildren just as much.
And her visit with us on her last night on earth will always be treasured. I feel honored that she chose to visit us and had one last round on her out of the confines of her hospital bed. I remember a story she told me one time while working where a patient died during her shift about 6 PM. All through the night the call light would go off in that room even though no one was in the room. Everyone on the floor being sufficiently freaked out over the call light going off repeatedly, Joan went down and unplugged the cal light from the wall. Needless to say it kept going off. So Joan went down to the room and sat down and talked to the spirit of the patient that was there. She told them their time had come and it was time to find peace and stop ringing the call light. The call light stopped going off after that little talk.
Joan believed in the soul and that it continues after we leave this earth. She showed us her faith by her visit to us and my precious Isabella. May Joan find peace that seldom seemed to be her lot here on earth and all the love the world can shower on her with God's blessings. Rest in peace Joan.
Education in Indiana
Many people think that when they have a special needs child that it will be the physical problems that will be the bane of their existence, the hardship so to say. And that is not it. Just as each child develops in their own fashion, so does the special needs child with all their individual abilities just like every child. It is fascinating to watch them grow as a parent. The bane of the parents existence, in my opinion, is the education factor. Making sure they succeed and the tools are available for them to achieve these goals. When I think of public education, I think of the tax dollars that fund that education and then back in time to Napoleon who first had the concept of public education that carried over into many different societies. The dream was education for all, not just those who could achieve it.
So it is with interest that I watch the education drama unfolding in Indiana. The former superintendent had the vision of education choice and enabled people to get vouchers to attend a private school, or they could attend the public school, had the ability to transfer to the public school across town or attend an online public school or even charter schools. This has angered a lot of people and made many other people happy. He also put in place a grading system on schools. Wasteful activity in my opinion, but I digress. Unfortunately, he is now being accused of receiving money and support for his campaign and in return changed the grade on another charter school from a C to an A. Damaging stuff all around regardless if it is true or not. On the other hand, the current superintendent is on the other side of the bandwagon. She is against anything other than your child sitting in the classroom of a traditional public school.
Herein lies the problem when it enters the world of special needs. You will find as a parent of a special needs child that you may have to babysit the traditional public school to ensure the education of your child. I've met many parents who have just put blinders on as to what is going on because they can't be bothered to put any time in it or won't rock the boat to do the right thing for their child. So if we take the current superintendent's stance, your child is stuck with going to the local public school and when things go south, your choices or that or bust. You could home school, but there are so many choices that will require money out of your pocket when your tax dollars are going to pay for the traditional public school that just isn't working.
Yes it impacts the public schools and the employment of teachers who now might have to work at a private school for less money and be held accountable for their actions. You want to know how many times I have heard the words come from a traditional public school teacher that states "you can't touch me, I have tenure." And this was after they had hit my child in the head for not being able to use the scissors like other children or told them they were stupid or said the "F" word while taking a cell phone call in the middle of class. I could go on, but you get the point. Most people who support this current superintendent have children who thrive in the traditional environment which is great or are the teachers and administrators themselves. It would be hard to lose that job that pays well and has such a great protection system with no accountability. I don't know about any of you, but I have never had a job with that many benefits and so many weeks off at summer and then be able to take personal days throughout the year. But again I digress.
So the choice to choose your school when you have a special needs child is a very valuable resource in my opinion. We've tried several different routes and have finally found one that works with the online public school, Indiana Connections Academy. It is just a shame that any possible actions on the former superintendent might shadow any good these choices lay at the feet of parents of children with special needs. Because let's just face it, sometimes we need an easy button and this choice option helps. And don't get me wrong, I am not completely against the public school system as I have one child who attends one regularly. But then she has no special needs and is a brainiac and goes by choice.
End all be all, is choice is good. In a democratic society such as ours, choice is even better and sets the example everywhere in the world. So when I get down to it, neither superintendent is or was doing the right thing for children by cheating or coercing grades or using the action to defeat school choice. Because at some point in time you have to have an open mind and think of all people involved. And in my opinion, the current superintendent thinks more of her agenda and her supporters and forgot people like you and me who want the best for our children's education with our tax dollars. It is time to roll with the times and update as many other states have done. It is time to drop the politics and make education work. My two cents.
The Last Days of Summer and Being a Down Syndrome 4 Year Old
Our summer is coming to a close which is always bittersweet. The kids are looking forward to school and then again they are not. The softball season has ended and now the try outs for travel softball and now high school softball. So many changes that it makes your head spin. I had a lovely summer with my teen daughter playing ball, while my 9 year old made new friends and tagged along and my four year old daughter with Down Syndrome entertained everyone. We loved being outdoors and meeting nice people.
So a few helpful tips at the wonderful age of four (especially if you are a DS 4). They love people and meeting new people. Isabella especially loves hands and teaching other people ASL. But she will take off quickly in a straight line and keep going. Since I have severe arthritis, that gets to be a point of consternation. So I bought a backpack with a leach attached. It is adorable and looks like a monkey. When Isabella isn't wearing it, she likes to play with it like a doll and fasten it's buckles. It is the single piece of equipment though that has kept her safe and maintained my sanity this summer. Plus I could say I caught a monkey by it's tail to her.
But another caveat in sports is not only choosing a team for it's coach and it's players, but also having the right parent dynamics. Nothing can make a year more miserable than a group of nasty parents. We just spent a year with some nasty parents of which one of them told her child that she couldn't play with my children because she had Down Syndrome because she would give her child germs. That being said, wait for the stars to leave your eyes and investigate every aspect of the team, before you spend a lot of money and time to only be miserable. We just subbed for a team this weekend that had the most polite parents that I had ever met. I am extremely thankful for their kindness and for just being a great group of people.
What are the other aspects of being a Down Syndrome 4 year old? Well for one, she is small for her age. Some people would freak out about that, but she is just so cute. Plus people still think of her as a toddler and she gets all the benefits. Not a bad thing after all. And I love when people think she is just not old enough to figure it out. She will study you and repeat your every action which is hilarious. She never ceases to amaze me. And I get to tell her that she had Tinker Bell's eyes.
So if you have doubts about caring for a child with Down Syndrome or even interacting with one, put away every thought or misconception you may have. They will take you on a journey you have never experienced before and it is so new and fulfilling that you will nver look back or regret it.
In closing, here is a hip hip hooray for the Summer of 2013 and looking forward to what the future is going to bring us. Because with Isabella and the rest of my kids, everything is bigger and brighter.
A Day in the Life of Isabella (Dance)
Let me start this blog set with a disclaimer by saying there are degrees of Down Syndrome just like there are degrees of Autism. My son has Autism and he is very high functioning and the same goes for Isabella with her Down Syndrome. In stature she looks like she is around 21/2 to 3 years old rather than 4 years old as is her real age. And yes she is fighting me on potty training although she completely gets the concept. Trust me, she left the surprise for me in the bathroom potty seat. She tries everyday to communicate everything with me. Some things like "Meaghan" and "stop" is clear as a bell. She signs a lot of things as is common in our house because Ally and I sign all the time secondary to her hearing. But other things that Isabella says are like a jibber jabber and I can see in her eyes the frustration that I do not understand. She can count to ten and if I tell her to get something or close a door, she can do it and understands completely. It is really cute.
Now a day in the real world. Isabella adores going to the softball fields to watch her sister play ball. She loves the dirt on the field and throwing a softball. So she may play ball one day . But she also loves music and dance. Every time she sees her sister. Meaghan, go to dance, she gets really excited. So this summer we decided to sign her up for a gymnastics class. We talked to the teacher in great detail about Isabella's capabilities and she was really excited. Unfortunately, she had to move to Chicago for a year with her husband so the owner of the studio took over the class. Now this instructor is awesome, but mostly with older children and I think she would probably tell you that herself.
So the first day of class started with trying to get a whole class of 3-4 year olds to sit in a circle and listen to a 10-15 minute talk on the rules. I think most of us know that is a long time to capture the attention of that age group, but Isabella did pretty well. There is a teenage instructor in there and Isabella sat in her lap and played with the girl's hands while the talk was going on. The next step was to assign each child a spot at the mirrors under a certain color. Isabella was going to be chosen last and she understood partially that she was last or was going to be left out. So she decided to stand up and sit next to the mirror under an empty color. Pretty smart girl. Then the instructor started calling on the girls to get in line for the class and again she was picking Isabella last. So Isabella decided to take things in her own hands and put herself in line. I thought again, smart girl. Class started finally and to my dismay she was teaching them a dance. I had asked for gymnastics because I felt dance would be too much to start with Isabella. The first step was to have sticky hands and to put your hands on your hips. Isabella got this part down well. Then the instructor showed four steps in the dance in quick succession. Well, more than one child I could see was overwhelmed. Isabella just watched and watched trying to absorb it all. Unfortunately, it overwhelmed her and she headed straight to a watching father and stood next to him playing with his hands and watching the class. I knew this was her way of calming down. I talked her back into class and the same thing happened again. I picked her up and hugged her and she started to have a temper tantrum. The instructor turned to me and stated it wasn't going to work. I was so dismayed. There were so many things that went on here that was wrong and disappointing, but for Isabella's sake I think it was best. I carried my beautiful, little daughter to the car crying. I really don't know who was crying harder, her or me. Next week, I took Meaghan to class and Isabella was upset that I wasn't putting her in her leotard, tutu and ballet slippers. So I let her wear them and thankfully she fell asleep in her car seat on the way to dance. I worry what she will do this week, but I know there are other dance classes out there with teachers equipped to handle little girls like my Isabella. But the big lesson here is that just because she has Down Syndrome doesn't mean she isn't cognizant of her surroundings just like other children. Her heart breaks just like ours and she desires to be loved and accepted just like other chlldren.
School Choice for Special Needs Children and High School Sports Associations
Napoleon had the right idea when he developed the first concepts of public education. It was with the premise of education for all, not just the fortunate few. Today we still have public education and many other choices such as virtual public schools, charter school, private schools and home schools. Each one is that is chosen is the choice that the parent had found to be the right educational choice for their child and their family. When it comes to special needs children, that choice becomes even more important. In my house, I have four special needs children. A son with Autism, long term and short term memory loss and heart problems, a daughter who is legally deaf, a daughter who is hard of hearing and has Type 1 Diabetes and a daughter with Down Syndrome. Picking the right educational choice with so many diverse needs gets tricky. We have finally found success with the virtual public school system and it works well for all my children making things simple for me as a mother.
On the other hand we have to look at our other choices and I have one daughter who does play sports, softball in fact, and she is very good. She wants and should be able to play softball at a high school level. Our tax dollars pay for al the public schools and their sports programs. The virtual public school that my children attend is not a part of the Indiana High School Sports Association that governs the sports in public and private schools in Indiana. In addition, they do not have a softball team. IHSSA does provide a rule (Rule 12-4) that does state that if a child is a student in a public school that is not a member of IHSSA and does not have team that they can play sports the the public school serving their area. But the caveat is they put in there is that the public school serving your area can deny you access. This in my opinion is nothing but a tool to force people to join that public school regardless of the fact of what is right for your child educationally and takes away parent choice.
When I think about this further, I come upon the realization that my tax dollars are paying for all these public schools whether they be virtual or stand alone. My tax dollars also pay for their sports programs which include softball. But upon research you will find that most high school sports associations are private entities that are paid by fees to be run by the entities that utilize them. That would be the public and private schools. So essentially public tax dollars are funding a private entity to make rules that enable a public school to deny my child a right to play sports and force my educational choices. Does anyone else see the irony in this situation? Personally, if the state education system is going to allow an entity to be paid out of public tax dollars to make decisions on public entity programs, at least the entity should be a public or government controlled entity that allows for equality in making it's rules so free choice is not taken away.
The Indiana school system is very pro-choice, but I don't think that when it comes to sports and the entity that governs those sports, they have given much thought on it's inner workings. I think that time is overdue. I am sure, I am not the only parent who has faced this dilemma, but I doubt many have taken the time to question it. It is time that the State of Indiana start looking at the sports governing organizations , their rules and how they incorporate the free choice of education into those rules so as not to force the hands of parents. Home School parents pay more for education because they not only pay for the public education system, but then their own books and resources plus their time. It is my understanding that virtual public schools receive less funding than traditional public schools. So why is my daughter being denied to play softball when she is more than able. She has had 18 over the fence home runs since last summer, a grand slam this weekend and pitches now at 69 mph, so it is not because she cannot accomplish the sport reasonably. She was denied to play for her local school unless she enrolled because they only want enrolled students. It was not because they cannot have access to her grades, attendance and progress because that can very well be made available, they simply want to force enrollment. Because enrollment means a greater amount of tax dollars into that school system. They each have a general allotment, but their is an allotment per student and each special education student enrolled gets a larger allotment. That means they have to provide services, but then that is left up to the parent to make sure that they follow through. School systems love children like my Ally because they get this larger allotment because of her hearing loss, but she is gifted athletically and academically. So she brings in more money with little resources being used and schools are not great at giving resources without a fight. That is the result of free choice in education. We tried the traditional public school and they failed miserably. My diabetic daughter was puled from her public school by her doctor because it was an unsafe environment because her volunteer violated the medical plan miserably. My deaf daughter was not getting all the resources she needed and was ridiculed by teachers and students simply by asking them to repeat what was said because she didn't hear them or wasn't able to see their lips to read them. It is not for a lack of trying, we as a family had to find an educational system that worked. But when it comes to sports, they are part of the public education system that is funded by public tax dollars. It should be be up to a private entity to decide whether my child pays sports or not in the public education arena and in addition, the school system should not have a legal right to be denied the right to play.
Bullying and Sports
I once had a friend whose daughter also played softball. Her daughter was older than mine, but she told me that as your daughter gets better and better at this sport , be prepared for people to do dirty things to try to knock her down. I do know that she as a mom was attacked and accused of things that may or may not be true. Her daughter was attacked too. In my opinion, whatever happened wasn't anyone's business and I liked them both. They were decent people who just enjoyed softball and I liked them both. But her words have always been encased safely in my heart as they were wise words.
Let me start by telling you a little bit about Ally. She is 14, straight A student at Indiana Connections Academy, a pitcher for the Indiana Mojo Softball team and she is deaf. Ally lost her hearing as a toddler from IV antibiotics after a ruptured appendix. We didn't know she was losing her hearing from this till age 12 when she took a softball to the head during game play that caused a blood clot on the pinna of her ear. She thought reading lips was a normal way of life. So now she , I and her siblings are learning ASL and I teach it. Although she could teach me and others now. But Ally plays softball like she is the reincarnation of Joe DiMaggio. She throws like no one we've ever seen, pitches at a top speed of 63 mph with 21 revolutions on the ball and has hit 15 over the fence home runs since last summer.
Have I got your attention yet? Yep, we've had her evaluated by Softball.com last year and she is playing at a high school varsity level. I am a very proud mother needless to say. But with these accomplishments comes great responsibility and great peril. We've paid $1200 to play on a travel team where the coach benched Ally for the rest of the day for hitting an over the fence home run because a jealous parent didn't want her out there on the field anymore taking attention from her daughter. Ally has been pulled in to pitch for this girl when she was failing on the mound to save the game, then pitched fantistically the next game to get the team to the championship game, only to be benched from the championship game, so the other girl who Ally relieved could pitch because the parents didn't want Ally on the field.
Now we have a wonderful team and coach. We couldn't ask for a better set of parents or girls except one. This one parent , told her daughter (who happened to repeat it to us) that she couldn't play with my other daughter because my daughter with Down Syndrome would give her germs. Bad, yes, but our wonderful coach handled it and we move on as a team. But it is the outside we deal with now.
We recently had a father, who is an assistant coach on a rival team, ask us at a tournament for Ally to take it easy on them. Our coach and my daughter took it as kidding. We beat them badly needless to say. The next time we played them, this same father asked for my daughter to take it easy on them because his daughter had hurt her arm. My question is, if she is hurt, what is she doing playing? We beat them badly again and I am talking 10-0, 8-0 type stuff. The next time we played them, he asked for my daughter to take it easy on them again because his team wanted a better seed in the tournament and it wasn't going to happen if we beat them as we had in the past. My coach, being tired of the line of requests each time we met them, replied no, we came to win.
No, you really didn't think he stopped there did you? This same father just recently as in 2 months ago, started going to the same pitching coach as my daughter. After this last tournament, this father/coach took it upon himself to tell our pitching coach that my daughter threw nothing but rise balls the entire tournament and they were all crooked. So several things here, it was untrue: she threw some high balls for one inning because they had failed to move the pitchers mound back to 43 feet from 40 feet; Ally adjusted after the umpires refused to move the mound because the game had already started; and finally what business was it of this father's to tell the pitching coach. The reason he gave to the pitching coach was that he was concerned. Really? What are your thoughts? Concerned or causing trouble.
The end result was that the pitching coach believed him for whatever reason although he knows Ally is a low ball pitcher. He stated this fact in front of Ally's colleagues at the lesson and then told her the lesson was dedicated to rise balls based on this comment. Now the pitching coach was probably concerned for Ally and wanted to help her, but how he executed it was all wrong and ended up enabling the bullying of the father and achieving the father's goal of tearing Ally down. This same pitching coach is the one who told us that he couldn't believe how far along Ally was when we brought her to him 18 months ago as a self taught pitcher. He also told us two weeks ago that Ally was bound to play for a D1 college and was a 3 dimensional pitcher. After being called on the carpet for this past behavior, he now says that Ally pitches like a 10U player. Really? I think I've wasted my money folks and I know it was a below the belt comment which makes me not want to do business with him even more.
But this folks is the type of bullying that we see going on in sports. People always talk about the parents that bully their children and I've seen that too. Or the children that bully other children on the field and we've seen that behavior too. But this type of bullying happens too and is not talked about as often as the others. It is just as important though as the others because bullying is bullying.
Our coach at first thought to ignore it and keep beating them as we had in the past. After some thought though, I said no. That is only accepting the behavior and if he was brave enough to take it outside the field, what else was he willing to do to achieve his ends? Needless to say, we are not going to that pitching coach anymore, but we have made enough contacts that I am confident we can find a good replacement. I made a complaint to the local tournament director who was very upset about the situation and is calling the coach over the organization. Our coach is talking to the coach over the team and the pitching coach. The end result though is priceless. My daughter, who felt very broken by this father and pitching coach, was not broken but only bent as taken from Pink's new song. She saw how mean people can be and is now stronger for it. No longer does she look in her pitching coach's mirror, but her own. And she saw how many people really loved and cared for her. This never would have happened if we had ignored this bullying and I think during these teenage years they need to know we are going to be there for them as a family and a village while giving them the tools to stand on their own. Because one day, they may need to stand up for their child and say no!
Service Dog or Not?
My blog today deals with service animals. We were blessed five years ago with a cocker spaniel by the name of Hoover. He was bought just as a family pet and soon became invaluable. He would let me know when my daughter, who is a Type 1 Diabetic, was low or high. It started at simply as he wouldn't leave her side or he would ay with her if she was sleeping. Then he progressed to waking me up if she was having issues with her glucose. And once she was normal, he would go off to do whatever he wanted to do. He was so reliable and had the natural ability.
We lost Hoover this past summer thanks to a very mean neighbor that Hoover always let us know was a danger. We were fortunate enough to get a new puppy from the same bloodline as Hoover. His name is Rembrandt and at the age of 6 months, he is already showing the same natural ability that Hoover had at letting us know the Meaghan's glucose has gone wonkers again. When I spoke to his breeder, she stated that four of her pups from the bloodline have shown to have the same ability. It is simply amazing and such a lifesaver.
But in addition, to being a Diabetic service animal, he works for my daughter who is deaf. He lets her know when someone is at the door or her phone is ringing. And for my daughter with Down Syndrome, he watchers for her and is a very soothing companion. It never ceases to amaze me to the abilities of animals and how they can impact our lives. I know most have to be trained and it can be done on your own or through a professional agency. We are training Rembrandt on our own to enhance what he doing now.
Our training consists of the usual commands like sit and heel, but Rembrandt also has to learn not to beg for food when in a restaurant. In addition, you have to train your service animal to not jump out of the car. Then to train a diabetic service dog, you should swab the inside of your mouth when you are high or low with a clean swab or 2x2. Place this swab in a sealed baggie that is labeled with the date and time and freeze it. Then at training time, you place the swab in a clean container in a room without distractions like food smells. The animal must go to the container of their own free will. When they do go to the container, you reward them. Once they are good at task, you place the container near the person with diabetes and reward them when they start going to them based on the smells.
Training your own service animal is rewarding , but requires a lot of patience. Picking the right animal for your family is a big choice too. We have had a lot of success with cocker spaniels which are really good with people. Many people prefer labradors. Sweet dogs, but too hyper for us. Golden Retrievers are good choices too. Anyway, if you are contemplating a service animal, don't forget to make sure that you as a family are ready to take care of the animal and be prepared to take them wherever you go. That is their job and they will take it seriously. But it also very rewarding for you, your loved one, family and the animal.
Life with a Down Syndrome Kiddo, First the News.
I remember this day 3 years ago as if it were yesterday. I was excited to be carrying my fifth child which was a miracle to conceive. She was a little girl and I chose the name Isabella Anneliese and the joy I was feeling was insurmountable. First the bloodwork came back and stated my little girl had Down Syndrome. My heart clenched, but I did not worry. It had been a false positive before with my other children. I was certain everything would be okay. Then there was the ultrasound that was positive for the extra nuchal folds (skin folds at her neck). My heart stopped a little more, but I still did not worry. Next step, the amniocentesis. I had done this before and while it is not the worse procedure in the world, it is not what you want to go through either. The good news is that it can tell you emphatically if you are having a boy or a girl and in my case confirmed that Isabella had Down Syndrome. I had never felt so alone in the world. My husband withdrew from me and was distant. My children didn't know how to respond and I was already experiencing prenatal depression. My OB/Gyn recommended an abortion, but being Catholic and pro-life, I couldn't bare the thought of giving up on my little girl. So I carried on and we had several ultrasounds in worry that her head had swelling and she would be brain damaged. We carried on and I prayed as I had never prayed before in my life till there was light at the end oif the tunnel.
On March 9, 2009, a beautiful blond haired, blue eyed girl was born and she was perfect in everyday. Her eyes looked like the eyes of a fairy and she had the most beautiful smile. Many thanks to our pediatrician, he got us connected to a local group of parents who also have children with Down Syndrome. They gave me a plethora of information, have invited us to participate in local parties and events and each year Isabella is in their calendar. I just wish that my OB/GYN had gotten me in contact with them earlier, because it makes the difference between night and day. I learned that DS kiddos are the most loving in the world and are like most other kids. Okay, so Isabella is taking her time learning to potty train, but is that the worse thing in the world? She can write and color, sing and dance, and loves everyone. What joy can any other parent ask for? She is healthy and the highlight of my familiy's day. And if we had been in contact with our local DS group earlier, I would have been saved a lot of depression and worry. So this artlcle goes out to Rosalie from our local group who has been the kindest person and biggest help around when it comes to me and my Isaroo.
So if you find yourself in the same situation I was in above, find your local Down Syndrome group and meet other parents and DS kiddos before you make any decisions on the life of your child. Because there is probably a Rosalie out there to help you too. Watch my blog to hear more about Isabella and how she has progressed to the little princess she is today and helpful hints on what you can do for your DS kiddo as she or he grows up.
Down Syndrome, The First Year
The first year with my DS angel was the same as it was with any other little angel. She went to the doctor maybe a little more frequently for check ups. She stayed smaller than someone without Down Syndrome, but hey she was my fifth and last child, I can take baby for longer. But her milestones ended up being almost the same as kiddos her age without down syndrome. She crawled, walked, talked and clapped her hands just like any other child. But what can I attribute to her success? First of all, is if your doctor advises you to get involved with a First Steps program, do it. It is a wonderful program that brings occupational, physical and speech therapists to your home. Isabella looked forward to when Ashley or Jennifer came for "play time". Every week she had a play date in her home with an occupational and speech therapist and she progresses wonderfully. Plus it was fun as a stay at home mom to see another adult and share in my daughter's milestones. They got as excited as I did when Isabella did something new. As most DS kiddos have low muscle tone, Isabella has bet the odds. That child can climb anything and has no fear. And she will be wearing a smile as she does it. So what are your worse fears during that first year? They should be minimal as long as you take due care and get your DS Angel the treatment options available.
The only other thing that I was really careful with Isabella was colds. Down Syndrome kiddos are prone for respiratory infections and pneumonia. Thankfully, Isabella has had pneumonia only once and three ear infections in her three little years of life. She has beat her oldest sister on those odds and Rachael has nothing going on. So good care and treatment can male your DS Angel a happy camper all day long.
The Toddler Years and Gifts At Christmas.
Time really flies with the holidays and five kiddos in the house. My oldest was just elected the Lt. Governor for Key Club in the state which is a great accomplishment to be elected by her peers. I wanted to start this blog off by telling of some of the gifts Isabella has received for birthdays or Christmas that are wonderful for DS kiddos and then talk about her toddler years where we are at now.
For starters, Santa brought Isabella an Innotab for Christmas. This has been a wonderful gift as she loves our iPads and can operate them. I just worry about her tossing them and breaking them. So the Innotab was our choice. Durable, she can take pictures and videos and play music I upload to it. It has been a lifesaver. She also loves drums, pianos, anything musical and I have not seen a Down Syndrome kiddo who isn't musical. They have this uncanny rhythm that I wish I had had. It is wonderful. She also loves baby dolls and strollers. DS kids are full of love and want to reciprocate this love. Isabella carries her doll everywhere and walks it in her stroller. For her birthday in a couple of months, she is getting a Build A Bear that lights up in the dark and it will of course play music and have a heart beat! So there are ideas for gifts that have worked for my little Izzy.
Now for the toddler years. Isabella walked a little later than my other kids and kids her age and she still talks a little dutchy for almost being 4. She goes to occupational therapy and speech therapy each week which some kids don't have to do. But it is so worth it. We ahd a five word sentence the other day which threw us off our chairs. And she told the other four kids, "Silence!" clear as a bell the other night. She is really along. So yes she is delayed compared to other toddler and she looks barely over 2 years of age. Am i bothered by this? No way! Isabella is getting there just like any other kid. She is taking her sweet time as is her way and she is stubborn, let me tell you. We are working on potty training. She is getting the idea, but again slowly. But she gets the concept just like any other kid her age.
So my point in this story is that all parents worry about in their Down Syndrome pregnancy about how hard it is going to be to raise a DS kiddo. It's not hard really, just requires more patience. And if you get tied up comparing your kids to other children, you'll go mad. No one should do that to their child. They all have their own unique ways and surprise us all the time. Patience is the biggest issue and the allocation of time. Putting the time in to take them to therapy sessions which will go a long way in life.
And involve your other children in helping with your DS kiddos growth and development. My son, Andrew is Isabella's biggest fan and she his. Sometimes he can sit down and teach her something is 2 seconds that has taken me all week because she tries to please him and he loves to pay attention to her. Being that he is 16, he'll probably be teaching her to operate the XBox controller soon.
So you want the positives? Isabella's clothes last a long time since she is not growing fast and that is okay. She has lots of hand me downs just waiting for her when the time comes. Plus I have the joy of enjoying her childhood. Children grow up too fast and for once I have a chold who is taking her time and I get to enjoy her childhood more fully. So if you are worried about your DS angel or about having one in the toddler years, throw your worries out the window. It will be one of the most enriching and engaging times of your life . They will fill your life with more joy.
"The Scarlet Ibis"
Tonight I want to share my son's paper on "The Scarlet Ibis." This short story by James Hurst tells the trials of a boy , Doodle, who is born disabled and his brother who struggle to make Doodle normal. This struggle results in Doodle's death because his heart gives out physically, bu emotionally and mentally too. I love this short story because it speaks such a poignant message about how sometimes different is good and those of us without disabilities need to look farther than the surface. We who are disabled need to be challenged but within our limits. I am currently disabled with Psoriatic Arthritis and I have five children of which four have disabilities from high functioning autism , hearing loss, Type 1 Diabetes and Down Syndrome. My son with autism shares with you his review of "The Scarlet Ibis" tonight. Enjoy!
“The Scarlet Ibis”
December 17, 2012
“The Scarlet Ibis” is a short story by James Hurst which depicts a boy named Doodle who is born with disabilities and the trials he and his brother go through in dealing with his disabilities and eventual death. The scarlet ibis is a bird that is not native to North Carolina where the story has it’s setting, but the imagery of this bird along with the imagery from the native plants like the bleeding tree adds emphasis to the story of Doodle and his brother. The scarlet ibis symbolizes the journey of Doodle into this world and the hard work he had at being born, just living in this world, and his hard work at trying to be normal like all other boys at his brother’s urgings. In death, the scarlet ibis symbolizes Doodle’s journey out of this world borne on the pride and hard work to succeed at being normal. This story shows a boy born that no one thought would survive and a brother who kept watch and helped him to survive and push himself to be like everyone else whether for pride or Doodle’s own good. And in the end it shows how our desires to change people without regard to what they are capable of doing without our interference can have bad consequences. So I state that “The Scarlet Ibis” is a story of the triumphs and trials of a boy with disabilities and the brother who stood by his side to make him part of this world for good or bad.
Children are born with disabilities sometimes. Some people cannot see the disabilities and assume they are like everyone else and that they can achieve or do everything like everyone else. Sometimes this is true and it just takes a greater effort, but other times this is not the case and the person with disabilities needs to achieve the goal in a different manner. Maybe they get around on a wheelchair or crutches, but they get around. On the other hand, people without disabilities overlook the disabled person’s difficulties and just push for them to be the same as them. I think people do this because they cannot understand different or they just push it away and don’t realize what a blessing the disabled person can be in their lives. The scarlet ibis is one image of a disabled person who through much difficulty arrives in the world, struggles to survive in this new world and then dies from the struggle. The bird travelled through a terrible storm and landed in a new land just as Doodle arrived in this world with his disabilities. The ibis struggled to survive in the bleeding tree and fight for its life despite its injuries which now made it disabled. Just as Doodle learned to smile for the first time, rode in a wagon and then worked to walk, swim and run because his brother wanted him to be like all other boys his age. Doodle tried so hard because he knew he was different and he wanted to please his brother. His parents didn’t expect him to live and were just happy he was around after he survived, but accepted him and babied him to an extent. His brother though did not accept him completely and felt burdened with him at times when he had to cart him around in the wagon, so he tried to teach him to walk and swim. Part of this was done in love because he wanted his brother to succeed, but part was done because he could not fully accept Doodle was different and this is depicted in the line at the end, “The knowledge that Doodle’s and my plans had come to naught was bitter and that streak of cruelty within me awakened. I ran as fast as I could, leaving him far behind with a wall of rain dividing us.” (Hurst, p. 101) That wall of rain symbolizes that Doodle and his brother are different and the red of the bird symbolizes this cruelty or pride that showed from time to time from the brother. That “wall of rain” is what caused the bleeding lance to the heart of Doodle as he leaves this world after his great struggle to live as everyone else just like the ibis.
Another symbol that recurs is the color red and its connection with bleeding. There is a bleeding tree outside the boys’ house, the ibis is scarlet, and Doodle dies under a red nightshade bush with a gush of blood staining his shirt. The scarlet ibis came to the boys’ house and landed in the bleeding tree. It was a connection in the story to show Doodle’s struggle, how it was going to end in blood as the bleeding tree is so named and death. And Doodle taking the time to bury the bird was imagery of Doodle’s kind heart and acceptance of the bird and its soul and efforts. Doodle understood fully the bird and its disabilities and how hard it had tried to live. Then the color red appears again when Doodle is found under the red nightshade bush with blood staining his shirt .“Finally I went back and found him huddled beneath a red nightshade bush beside the road. He was sitting on the ground, his face buried in his arms, which were resting on his drawn up knees. …He didn’t answer, so I placed my hand on his forehead and lifted his head. Limply he fell backward onto the earth. He had been bleeding from the mouth, and his neck and the front of his shirt were stained a brilliant red. ….For a long , long time, it seemed forever, I lay there crying , sheltering my fallen scarlet ibis from the heresy of rain.” (Hurst, pp. 101-102) So the scarlet ibis flies to the heart of Doodle again in the color red as he bleeds out into the rain that tries to wash away the bad, but only becomes a bending of the truth because the author cannot turn back what has happened which is the heresy. So the color red along with the plants of the bleeding tree and red nightshade bush create foreshadowing of the eventual outcome of the boys attempts to make Doodle “normal” , but in the end the author realizes Doodle was normal as he was and the water cannot wash away that fact.
Educating Your Kiddos
We recently moved to a new school district because our old school district was lacking. i was told that my Type 1 Diabetic daughter could only go to school if they had a volunteer. Luckily she had Amy who was wonderful. Then they told me she couldn't ride the bus. I had to take off work for every field trip because there was never a volunteer which was okay because by that time I didn't trust them. My Autistic son had been hit in the head, and hands and told he was stupid for not being able to cut or color like the other kids because of his low muscle tone. My hard of hearing daughter was bullied for being different and restricted from sports, yes the softball playing phenom girl, for being different. And what did her teacher of record say, that her principal man handled kids everyday when she was a kid and to get used to it. We thought moving to a new and supposedly more advanced school system would help. Instead we got buyers remorse on a house with dangerous neighbors ; a school nurse who let another 9 year old child dose my diabetic daughter with insulin and who subsequently was overdosed, and had been overdosed with insulin 3 times in 6 weeks by the nurse who violated the medical plan by not calling me in 15 minutes when she was still low and waited 2 hours before calling me and it was so bad that her endocrinologist pulled her from school on medical leave because it was unsafe; my hard of hearing daughter was then bullied and denied items on her IEP by teachers and the principal threatened to take away her IEP rather than deal with the teacher; then we had a biology teacher with my son, which I love this story, doesn't believe in medicines or vaccinations. So the first two weeks she had a student, unlicensed teacher, she was out of the school tending her obviously very sick child. A student teacher who pulled every honors biology worksheet she could find off the internet to give special education students and then lost them ungraded after our 3-4 hours of work each time. I'm not too bitter am I? And the special education teacher in the classroom was taking personal pictures of the kids of things she could humiliate them with on her iPhone. Let me just say that your state makes school have a mandated disciplinary policy and I can guarantee that is not a discipline measure and it violates FERPA laws as pictures of your children are part of their school records and having their pictures on their teacher's iTunes files is a real privacy violation.
So am I happy with public education, absolutely not! Am I for the voucher system, absolutely! Don't get me wrong, because I have had some wonderful teachers in my life time. My French teacher comes to mind first. She was kind, gentle and a great teacher. But I also had several teachers, real teachers that I know if they knew a teacher who had committed any of the acts above, would have held that teacher responsible and accountable for their actions. Today, I have seen many teachers look the other way and oh how many times have I heard they have tenure and the teacher's union is going to protect them and they do. In fact, Miss who hits my child for not coloring correctly called me three times in a row to tell me this fact while cussing with the F word. Every time I hung up she called back and threatened me some more. I had to unplug the phone from the wall and we entered our time home schooling to protect our children.
Thankfully now we have options. The voucher system allows us to have a choice of going to a private school or we can do the online public school. This last option is the one we have chosen. My kids have flourished in a safe environment and I have less worries. It just makes me angry when all these people charge the state house demanding that the voucher system be taken away. We are taking precious money away from their public schools with no regard to what has happened to my children and I know other children because other parents call me to advocate or help them start the advocacy for them.Let me just say this, if you want your school to recover it's precious tax dollars for your children, then get rid of the teacher's union and start holding these bad apple teachers accountable. They are making it bad for all of the good teachers, the kids and the system in general. The voucher system was an answer to a system that needs change. Some unions are a good thing, but in this instance, their only focus is the teacher in trouble and not your children who are suffering in the end. In the meanwhile, I recommend checking out Connections Academy. They have been wonderful for my children. But the end all is that we need to fix a broken system. We cannot move forward until we take off the bandaids and actually fix the system.
The Terrible Fours
Okay the first thing you learn with a Down Syndrome kiddo is that they beat to their own drum. They grow at their own pace and develop skills at their own pace also. Isabella, being my last child, has made her babyhood more enjoyable. each new word and action although I think I am never going to get her potty trained! My other kiddos grew up so fast that I've really got to enjoy Isabella. But that being said, we bypassed the terrible threes and twos and are doing things a bit late by having the terrible fours.
Miss Isabella turned four on March 9th and turned on the switch for the temper tantrums. Oh my, can she be stubborn. Her favorite word is no and my is that vocabulary expanding. She is my little mocking bird and has plenty of fuel with three teenagers in the house who think it is funny. Never a dull moment.
I need to add a few items in this blog which Isabella's stubbornness has reminded me that I need to share. People in my Down Syndrome Group have shared these items with me and they need to be shared. The main item I want to share is that DS kiddos can be runners. By runners, I mean they love people and if they can get out of the house, they will run. So deadbolts on doors, alarms, special door handles that can be purchased at the hardware store are a necessity for piece of mind.
The second is that they do not know a stranger. Isabella's favorite past time is to go to the mall and hug everyone and I mean everyone. Most of the time it is harmless, but it scary at the same time. Especially now that she has hit her stubborn age and runs really fast. But it is cure too in the fact that when I took her into Build A Bear to get her birthday bear, they remembered her. She has to visit this store every time we go to the mall to play the musical sounds. It was very heartwarming and made her day so special.
Well, I had better end here and start on my next subject-education.