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Hello and welcome to the wonderful rollercoaster world! I am writing to tell you about my son ... at 2 1/2 he was evaluated and found to have developmental delays (speech, fine motor, etc.) He was labelled as PDD-NOS. A very confusing label and not much of an indicator about what his future held. My son also suffered from severe food allergies - since birth. He received intensive therapy (speech and OT) as well as a SEIT (Special Education Itinerant Teacher). The SEIT was of great help - this person is trained to communicate with the therapists and integrate the therapies into daily living situations. Our SEIT attended pre-school with our son and bridged the gaps.
Additionally, because of his allergies, his diet was excellent. He ate all fresh foods, nothing from a box, bag or can! His immune system also benefited, even as a toddler, he probably had only one cold a year.
Now he is almost 9 - he is extremely healthy and a very well-rounded, sincere and beautiful child. Through a lot of therapy and back-up work at home, he is a thriving third grader.
I tell you my story, because you need to know that all the hard work, tears and frustration works! You have to advocate for your child at every turn, but it's worth it. Work hard and get every resource available - your gut and mother's intution will guide you every time.
You are both very lucky to have your children in early intervention - don't worry about the labels, the worse the label the better at this age ... they get more services and that's what they need. My son was labeled with "autism" which provoked so much worry - but in the end he got over 15 hours a week of therapy. We had re-evaluated this past year and he is nowhere on the autism spectrum - about all he suffers from is his dislike of homework!
Probiotics are great, but I can not be more clear about the gluten and diary free diet - from my years of research, doctor visits, etc. I've come to learn that with children that have a propensity to development delays, the digestive track and immune system is compromised by the gluten an diary. Cut these out of their diet and you will eventually see a difference.
My son has experienced nothing but graciousness from parents, friends and teachers regarding his diet - they have all shown compassion and respect - he is not an outcast. You woul dbe surprised how many alternatives are out there. We also travel a great deal - not a problem. We've traveled in an RV across America, and lived in a remote village in Costa Rica for a month - it's easy if you just do a bit of prep.
As for the therapy - keep connected! I had follow up calls/meetings with the therapists every week. They would give me exercises to try at home and sometimes would let me participate insessions, so I could learn what to do at home as well. Also, have the therapists come talk to your child's teachers. They should have detailed communications as to progress and areas of concern. Consistency is key. I had a notebook that went with my son to all his therapy sessions - the therapists would jot a few notes as to issues, areas of concern and progress. This notebook went to school for his teachers to see, as well as home, his doctor and even his babysitter. It was an excellent way to better understand what was going on. It provided great insight and was a great reference for his progress and for his evaluation.
Sorry to rant on ... So much to say! If you need any information, advice or just want to winge, feel free to contact me!
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I know I haven’t blogged much lately, but to be honest, I have been really busy with little J. It started about a month ago when I realized that his friends seemed to passing him by. Little J is my angel and the sweetest, most loving child I have ever seen. Yet he really doesn’t speak much. Or communicate much at all. So my dear husband and I decided to have him evaluated. Where we live you can have this done for free through the Regional Center. If your child is “developmentally delayed” then they figure out the services that your child needs and help you get them….all paid for by the county…very cool! A few weeks ago I took Little J to get evaluated for everything but speech. The results came in and he is well below where he should be. Then the speech eval….he is well below where he should be for that too (not a surprise in the speech department). Now he is going to have therapy 12 hours a week! (I am really excited and hopeful that it will work for him!) After I got over the initial shock, I started to wonder if there was a correlation betwen developmental delays and food allergies. Anyone out there in the same situation we are in?? I would love to hear any and all stories!