What is ILWAD?
A place for those of us who refuse to allow a disability to become a defect, a disadvantage or a defeat. ( More Info? )
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Parents of people with disabilities
Public Group active 4 months, 1 week agoLooking for support and the ability to ask a question of other parents of people with disabilities…this group is for you!
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C NJ Mom posted an update in the group
Parents of people with disabilities: 4 months, 1 week ago · View
Hi,
I’m a parent with a 12 yr old boy with PDD-NOS and ADHD. I signed up here about a year ago, but haven’t been on much.
I wanted to check in and just say ”yep. still here!”
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Elizabeth Butler joined the group
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Ron Bercume posted an update in the group
Accessible Instructional Materials (AIM): Basics for Families – helps you decide if your child needs AIM http://bit.ly/q4SCrz
I read the AIM info but I think I need more help or more info. It’s not exactly for me my daughter came to me last year concern and I gave her what information I knew but it seems like they are being dismissed. It’s actually for my EX husbands step son. He’s 8 and is very slow. Doesn’t comprehen things very well. He is very small on the growth chart as well. The state came in and tested him and he has many learning disabilities. But the school told them that they are under staffed and that they can’t help him that it’s the parents place to pay to have someone come to the school to sit with him and help him. This was over a year an a half ago… When my daughter came to me because I worked in the school district before becoming fully disabled. I told her CA has that law every child has a right to education. My mind is foggy today so I cant give the exact name. But basicly it was every student had a right to go to school of choice regarding what their disability was. (if I understood correctly) So if you had a down syndrom child and the parents wanted that child in a regular class they could and the school had to provide another person to sit with them. They don’t have to be qualified to work with that sort of child or even be a teacher all they had to do was sit with the child in a regular class room. I was lucky to experience this first hand. I had a Autisum little boy in kindergarten. He had a very strong case and his parents did nothing to help so they would drop him off the second a teacher was at school and didn’t pick him up until 6PM after the long day plus after school program. This precious boy freaked at the sight of a bug,bus, diesel trucks, balloons, and he would jump on whomever he was around and start biting scratching, hitting. I was not trained for that or prepared in any way shape or form…..
So that every child has a right might have a good cause but not always good.
Now about my EX’s step son the state has confirmed again all their previous test that he has many learning disabilities but nobody is helping them. My daughter is greatly concerned!!!! Is there something that they could do to make them TAKE NOT AND PAY ATTENTION that this child has a problem and sending him to school and passing him isn’t going to help him. So I’m comeing here and asking all my ILWAD friends if they know of anything a parent can do with a Child with learning Disibiities? Please if anybody can help I would greatly appriciate it……
Really tough subject R. I specifically, after going through school in the ”slow” classes ( summer school 3,4 and 5th grades – then later in college being blessed with the Higher Educational Opportunity Program in NY State ) am now again very bless with 3 amazing children – smooth sailing so far but I do wonder sometimes how much genes matter.
My oldest, 10, is in multiple gifted programs, has wind major academic awards for her grade level many years in a a row, my middle girl, starts school in Sept., and my son is 2. I still have a long road ahead of me.
For me specifically and personally, it begs some serious questions. Most of which at 31yrs I have luckily resolved with more to be discovered.
Things like:
1. My children are not being raised nor are in a similar environment as I was. *I wont go into that, a book is being published on that in the next couple weeks.
2. As a child, I lived in CA, FLA, Las Vegas NV, NY and now PA. 2 grade schools, 1 middle school, then 3 high schools. I dropped out two times in 9th grade, moved to NY started over in a small town then got myself to college. It was one broken system after the other in some rather bad places. I was pushed through in large populations.
My long winded point is, everyone has their own path in a very imperfect world. There is NOT enough compassion and systems all over the world work and dont at the same time.
For me specifically, it did take some good people presenting opportunity, then after a story maybe similar to your step sons, one day I took advantage of it.
It did take me at 15 moving to a small town and a small public high school in upstate NY. There where some really great people there that opened some doors. But they saw that I was ready to do the work.
The rest is history – but life is still difficult any given day.
http://ronbercume.com/2010/12/15/obey-your-designer/
http://ronbercume.com/2011/04/29/interacting-with-my-favorite-artists/Thanks for sharin Ron. Like you said the boy going to have to have someone step up and take a special interest in him and find a way of giving him extra help….
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Jules posted an update in the group
I’m not exactly a parent, a step parent with only fortnightly contact. Still my little girl and I have a beautiful relationship, partly because of her disability. She has developmental disorders, we are in the process of having them defined, Autism Spectrum Disorder/Aspergers is the intermediate diagnosis. She has not had an easy time of things, and at nearly 13 years of age is only just starting to get some of the help she needs. Physically she is also challenged with muscle imbalances and both gross and fine motor skill problems.
What makes us connect so well is our shared experiences in life. I can relate to her frustration at not being able to do what she’d like to. I can help her use relaxation and mindfulness techniques to overcome anxiety attacks. We are also blessed in that my brother has ASD. He wasn’t diagnosed until he hit the workforce, he was too clever for his own good. Because of seeing his experiences I have been able to recognise the same patterns in My girl, so that we have avoided a lot of the stress that he went through.
This last week was a bit of a milestone for her. It fell to me to explain why she was going to the doctors again, as she was having a freak out about it. I took the plunge and told her she had a disability, that she wasn’t stupid, her brain was very clever, but it worked in a pattern that makes it hard for her to do things that other children can. We talked about the things we had been working on, like her walking with her podiatrist, and how there were other people who could help her work on other things she would like to do better, but we needed to go to the doctors first to work out exactly who to see.
Amazingly, she was comforted by this. She cried, and asked me if I was ok with it, and if her dad would be ok, and does mummy know too? I had trouble keeping myself in check as I explained that we had known for a long time, but were waiting for her to be able to understand that having a disability didn’t have to be a bad thing, it was just a problem to work around, and that her whole family was going to do their best to help her. I am amazed and strengthened by the determination she is showing to overcome what she can. She was happy to learn that it is ok that it’s going to take her a little longer to grow up than her brother and sister, and suggested that maybe 30 was a good time to do it.So that is our story so far, I hope that others can share there stories here too, and I look forward to hearing your experiences and questions, as well as your answers!
Amazing Jules, thanks for sharing.
That is SO beautiful. You see. It’s all about love and acceptance.
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jules joined the group
it has begun.
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ILivewithaDisability created the group
