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+--- Thread: New and Overwhelmed (/thread-733.html)
New and Overwhelmed - Aidan's Mom - 09-14-2012
Hi, my name is Heather. I am the proud mommy of two year old, Aidan. Aidan was recently diagnosed with SPD. At 15 months he failed the MCHAT and was supposed to be evaluated for autism. At the time I discussed my concerns with the doctor he suggested immediately starting in home speech and developmental therapy.
After a few visits from the therapists, we started noticing other things and both therapists agreed his issues were not related to autism. With further medical exam, we learned Aidan had 40% hearing in one ear and 41% hearing in the other. All believed this was contributing to his lack of speaking. Since birth, he had over 12 ear infections. We saw an ENT who informed us he also had enlarged tonsils and adenoids causing his nasal airway to be 100% blocked. Because
Of his age she did not want to remove the tonsils at the time. Tubes were put in his ears a week later. Within 2 weeks our little Aidan began talking. In August his tonsils and adenoids were removed and we now have a different child.
Many of his issues were related to the head problems he was having. But others stuck around. He still gags when he sees certain foods, is the most picky eater in the world, issues with textures and most of the other "symptoms" of SPD.
To date, the evaluation for autism has been cancelled. He currently works with an OT, DI and Speech therapist once a week. These therapies have been a blessing and he is making progress. Because therapy started several months ago, he was being treated as "autistic". His final diagnosis was finally made today.
It is a huge relief to finally have a name for what is different about him, I refuse to say what is "wrong" with him. There is nothing wrong with him, he's just different.
I am still coming to terms with all of this and trying to better understand it. It's not an easy thing to understand, in my opinion. That being said, I came to this site because I long for the support of others who are going through the same thing. I want to be among others who "get it". At the moment my biggest struggles are explaining SPD to others. While I understand it, for the most part, putting it in terms for others is difficult. My other struggle is the financial end. My insurance does not cover his therapy. I can't afford to keep paying out of pocket but I know he needs it. I have been given a list of things that will help him(chewy tubes, nuk brush and the sort). While I am positive these items would be beneficial, I just can't afford the extra costs. I'm hoping I am able to find someone here who knows if help financially is available and how to go about getting it.
I apologize for the long introduction. But I wanted my story in a nut shell out there. I am looking forward to learning, having support and mostly, just having people around who understand.
RE: New and Overwhelmed - Heather - 09-15-2012
Hello and welcome to the site. Yes, I know how that goes wanting to have someone who gets what parents of a SPD child goes through. I admire the fact that you refuse to say there is something "wrong" with him. I have the same stance with my children too, I feel they are just as normal as anyone else
As far as financial aide I am not sure of places that offer it for a SPD only diagnosis unfortunately, however you mentioned that he also was diagnosed with autism. There is funding through local organizations such as Easter Seals that you can get. Check to see if there are any where you are at. The will cover therapy as long as they have funding for.
Hope this helps
Hang in there and know we are here for you!
RE: New and Overwhelmed - Aidan's Mom - 09-15-2012
Hi. Thanks for the reply. He wasn't diagnosed with autism. It was originally thought the issues were due to autism. After surgeries and therapy, the diagnosis of SPD was made and we have gotten off the autism trail and he no longer how's any red flags for it. In sorry if I failed to include that. My mind sometimes gets off track.
RE: New and Overwhelmed - Heather - 09-16-2012
Aw, thats ok. I tend to let my mind get off track from time to time as well
I totally forgot to introduce myself, I'm Heather, mom of 3 girls, 7,4, and 2. My 7 year old has ADHD, my 4 year old has JRA and SPD and my 2 year old has autism and SPD. I myself also have SPD too, so we are one big sensory family lol.But anyways, like I said previously, I am not aware of too many places that off financial aide for strictly SPD. But, Easter Seals if you have one around will help if your child qualifies for services, regardless what the diagnosis is. They did for my 4 year old, but she was 18 months when I went through Easter Seals.
Here is the link to their page: http://www.easterseals.com/site/PageServer
RE: New and Overwhelmed - LynnNBoys - 09-16-2012
Hi Heather, if you're in the US, check with the local school district. There are some services that can be provided through the school before they are school aged. Early childhood intervention.
My older son wasn't diagnosed until he was 6 so you're lucky that it was caught early! My older son has SPD and anxiety.
Since my sons are opposite in many of their sensory issues, I explain it to others like this: My older son is mostly a sensory avoider. His volume knob is set too high, so everything feels too loud, too bright, too overwhelming to him. He is slow-to-warm in new situations. He's not comfortable being hugged/touched by people outside his immediate family. My younger son is a seeker in many sensory things. His volume knob is set too low, so he needs extra sensory input. He is in constant motion, he's a climber, a spinner, a toucher. He is a hugger, loves his weighted blanket, loves to twirl my hair in his fingers. To others he probably looks ADHD, but he's just a sensory seeker.
Welcome to the group!
RE: New and Overwhelmed - Aidan's Mom - 09-16-2012
Hi Lynn. I will definitely check into local schools. My son is like your second son. He's a sensory seeker. He's constantly crashing, spinning and running. Loves all of the things you mentioned. I've had many people say he has ADD, not professionals, just observers(nosey people). Aidan is currently in early intervention through a local program but it is only available until he turns 3. I simply can't afford all of the therapy after that. Currently I pay for his OT which is weekly. I actually will start paying next week as this is a new approach. It's a $40 co-pay for each visit. That adds up! Thank you all for your support. Again it is really nice knowing I'm not alone.
RE: New and Overwhelmed - LAC1961 - 09-17-2012
If you haven't read Growing an In Sync Child, it's well worth it--full of exercises and activities that you can implement on your own. In Connecticut we have an early intervention program that ends at 3 years old, but it ends because the school district is required to take over when the child turns 3. I recommend calling the special ed department at your local elementary school and asking for a meeting to evaluate for special needs services. They may wish to invite the early intervention specialist who's been seeing your child.
Keep sharing. We're all in this together!
RE: New and Overwhelmed - heather40 - 09-19-2012
HI!
You are doing a great job! My son is 8 has SPD he is a SENSORY SEEKER!!!! I have to say he has slowed down a lot thanks to therapy! I still use the weighted blankets, squeezy toys, he goes to school with a sit fit cushion, wing nut pencil topper, my school dist is not very accomidating, they refuse to give OT so I am always in a fight about that, he is pulled for a Social worker, sits in a quiet room for lunch. WHen he was younger I used to have a mini trampoline in the corner of the living room, that worked great! Picture cards, you can print them from on line for free, he is stil sensitive to many smells, eggs being a biggie! He used to throw up at the site of shaving cream, now he is outside looking for worms, slugs and earwigs. Heavy work is what I was told, get a favorite backpack and put some stuff in it. If you have to go somewhere do some heavy work or a lot of running before going if you need to sit for a period of time. Check for the Early Intervention program in your state I live in Il and we have Easter Seals and goes until 3yr. I still am in contact with all of his therapists, they were his/my lifesavers! Good luck, keep posting! You are doing great!!!!!