Hi - New to Group

Alison - posted on 11/22/2008

Jennifer, regarding state services, you should consult with Fara to see what resources she pulls from. Funding for special needs should be the same across your state.



I was luckly for the first 3 years because California had a fantastic "Early Start Program" and "Children's Services" organization that provided preschool and therapists for free. When I moved to Washington when Aidan was 3, I got good services from the school district - but I have to supplement privately where Aidan isn't making as much progress as I think he can.



One thing I do to get the most mileage out of my therapist dollars is hire assistants to do play-therapy with Aidan at home. I use Craig's List to find local people who have an interest in special needs and developing careers in therapy or teaching. I offer to pay them on an hourly basis, but their real incentive is that I teach them the techniques the therapists use, give them an opportunity to build work experience into their resume, give them contacts in the field, and provide a reference when they find their first job as an OTA/PTA etc.. I have to invest some initial training time and time to teach them new techniques when they arise. The financial cost is very little compared to a therapists rate.



Another inexpensive resource I have is Parks and Recreation department. I sign Aidan up for lots of classes and camps. In Washington there's a secret... P&R is obliged to provide a special assistant to special needs who is funded by the state. So, I have P&R find someone, and then I teach the person how to integrate therapy techniques into the class/program. The down side to this can be that Aidan may feel either singled out if he gets more discipline than the other kids - so I make sure the Special Assistant leaves any disciplinary issues to the teachers.



Lastly, I invest in a Coverdell account so I can use tax-free gains to pay for Aidan's special needs expenses. A Coverdell is an investment account which allows you to use gains tax free toward your child's special needs services for life. Here's a link: www.irs.gov/publications/p970/ch07.html.

Alison - posted on 11/22/2008

Jennifer,



I completely relate to your regret and questions over how things went with MacKenzie's birth... but I think your right not to dwell on it. I went through a zillion tests to figure out what happened - and got nothing out of it but lost time and money. I also wondered if I had done something, eaten something - but thinking that way didn't help either. Certainly don't feel guilty about working - Aidan's strokes were also most likely due to an infection too (though we have no conclusive proof) - and I didn't work. Like you, I just keep working away with therapists and reenergize each time Aidan accomplishes something new.

Fara - posted on 11/21/2008

Where do you live? I live in Arkansas and we have a medicare for people that have disabilities that we pay for but it is inexpensive- and it pays for what our insurance doesn't pay. Kids can be so mean. I know exactly what you are going through. My son has CP and we have gone through this many times. I started taking my son to a therapist and it helped him soooo much. He expressed alot to her that he would not share with me and also she gave me good parenting tips. I was an emotional wreck adn just wanted to rescue him. It helped tremendously! Gunner was born 11 weeks early and had a stroke. We noticed at 5 months. Where do you live? We went round and round with the schools too- remember though you are her voice and fight for her education! She deserves it! I am so sorry that you are going through this- no one understands- I do!

Jennifer - posted on 11/21/2008

Hi Alison!



My new neice is named Allison. This is the first site I have joined and openly put MacKenzie's and my life out there. So thank you for sharing with me, I don't feel so uncomfortable anymore.



It sounds (and looks - so handsome) like you have a wonderful little man, with a very positive attitude. MacKenzie had her stroke right after delivery, due to her respitory distress and the multiple other complications. Mac's Neuro diagnosed the stroke being caused by a blod clot that blocked the flow of blood and oxygen to her brain. Unfortunately, when an infant is delivered and they are intabated, NICU protocol is to have an MRI immediately. That was never done. I have been told that they could of operated and reversed the blockage if they had known. I try not to dwell on that to much. I always go back through my pregnancy and see if there was something I could of done to cause this. I still feel guilty because my water broke at 35 weeks all because I was working so much to save all my vacation time for the maternity. I worked for a small company, short term disability and no maternity leave. Anyway, i caught a virus 2 days before I went into labor and the OBGYN has said she thinks it was the reason I delivered so early.



MacKenzie's left frontal, medial, and pariatal lobes were all dead matter and a small portion of her right medial lobe. She is still my little miracle and makes me laugh everyday. She is very determined and so resilient, I couldn't imagine life any other way.

You are so right about every little bit of progress being rewarding.



All the behaivoral testing came out of her first try at 1st grade. She was doing so well and then had severe regression through the first grade, physically and emotionally. I wish I could say we can afford all the treatments she has needed, but it has been tough. We have insurance but even in network we have a percentage to pay and in VA the county interventions are not free. So we have financially blown through a great deal of savings and retirement.



It does not matter to me, i would give anything for her. Right now I am fighting the school system on the IEP and getting her the appropriate services and enough time of each. We have jus begun further testing for the autistic piece. So I think it all depends on what and how much of the brain is damaged that is causing all our additional medical complications.



I learn more each day and that is one of the reasons I joined this group. Looking for different suggestions and techniques and creative ways others have helped their children. So thanks again for sharing with me - I look forward to chating more.

Alison - posted on 11/20/2008

Hi!



I have a 5 year old son, Aidan, who also had strokes inutero. We knew right away because he had seizures at birth. The MRIs performed helped us determine where the damage was and then project what challenges he would have. He was diagnosed officially with Cerebral Palsy. Like your child, he is hemipalegic on the left side, has tonic/clonic siezures, and lots of developmental delays.



Working with Aidan to overcome his challenges has been the greatest joy of my life. Everything he learns is such a huge accomplishment. When he learned to crawl up the stairs, it was like he climbed Mount Everest. He has a wonderful 'can-do' attitude that has been the key to his success in overcoming those challenges.



He has never been diagnosed with Autism though - I didn't know strokes could result in that condition. He has developed some sensory processing issues - but his OT explained that this is not the same thing as the sensory issues for Autistic children. She said that sensory problems in Autism are triggered in the lower brain (hypothalumus, etc.). Aidan's sensory processing issues are more likely triggered in the damaged area in his parietal lobe where information from the various senses is organized. Regardless, it seems that there are techniques that I can learn from Autism and Asperger's to help him overcome his sensory integration problems.



I quit my carreer so I could support Aidan full-time. My decision wasn't about money - I could have afforded a good Nanny and the costs of health care. It was about being directly involved with the most important person in my life. Its a ton of work, but its the most rewarding thing I've ever done. I've learned so much from the people who support us - his doctors, Occupational therapists, Physical therapists, Speach therapists, Visual therapists, and special ed teachers. I guess I'm much happier devoting my time to helping Aidan because finally I'm doing something completely selfless and out of love.