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I am new here. Need help - Cindy - 01-13-2012
My 18 months old son has been evaluated at early intervention for developmental delays, SPD and autism.
He's the only son and only child in both families.
We are so scared. We feel devastated. All we want is to have pour son healthy and normal. We want him to grow normal and develop normally.
He has some sort of speech problem. He just speaks few words (but in his Mom's day out most the kids his age don't speak much.
He will start speech therapy next month.
He likes to move, to spin, to walk in circles, to jump. He's very active. But he also sits to play quietly and watch his favorite DVD's from baby Einstein.
he's affectionate. He hugs me and his father. He smiles, laughts. He makes eye contact and attends by his name.
He is a picky eater. There are some smoth textures he doesn't like, for example macaroni (pasta). He doesn't like fruits, but orange juice. He eats meat, chicken, sweet potato, mashed potatoes, rice and beans, lentils, oat meal, yogurt, milk, baby prunes puree, GF crackers, GF graham crackers-style. Since I have celiac disease, he just eats gluten-free because of the risk of developing that disease.
He doesn't scribe, nor stack cubes or rings. Although I play with him everyday stacking cubes and rings, he doesn't care. And he gets mad if I make his hand do it. The same with crayons. He likes to play with them, but never ever draw a line in the paper.
he's still in the sippy cup. No cups yet. maybe because I didn't work enough with it. I am always thinking about the mess i will have to clean afterwards. Maybe it's my fault.
i never took him to walk on the sand or grass. I'm sort of germ phobic. Maybe because I got a lot larva migrans from cats and dogs pooping on the street (I lived in Brazil most of my life).
When he was 9 months he felt from the bed and I was worried and took him to make a CT scan of his head. There were no signs of trauma, but we found out that his left side of the brain is a little smaller than the right and the left ventricule is larger than the right (to compensate said the neuro surgeon). The neuro pediatrician said the only thing she found was a hyperreflexia in his right lower limb. The OT said he wasn't delayed but he needed exercises for coordination, fine motor and cause and effect. He had a posture to sit that was wrong and could cause him to have a shorter leg.
i was doing the exercises and playing all this with him. I was correcting his way to sit down everyday. He finally gave up the position when he started to walk at 12 months.
He is clumsy to walk and he falls a lot. His coordination is not good. Sometimes I think he doesn't understand the space and the proximity of things.
It was hard to make him hold his bottle to drink milk. But the transition to sip cup was great in 1 day.
Well, I don't know so many things. His father know less than me. We feel lost and hopeless.
All we wanted is to have our son healthy.
The coordinator at EI said to me today that if he doesn't have autism, we should do genetic tests. Genetic tests in my son?
We started the paperwork to see a private developmental pediatrician. We don't have the money, but my brother said he will pay for this medical bills.
We don't have insurance yet. Maybe in February.
Why life needs to be so challenging? Why my son?
We feel broke.
Please, help us.
RE: I am new here. Need help - AngelaVA - 01-13-2012
Okay, first ((hugs)) it is really going to be okay, really. He is the same little boy you love, those diagnosis's don't change who he is, they are just meant to help you try to meet his needs to help him better learn and grow. His diet is actually really good for an 18 month old with developmental delays, my daughter ate very little solid food until age 2 but is still an excellent eater at age 5 just to give you an idea of how much things can change in a few years. The sippy cup thing is totally not your fault and honestly not something I would worry about at all right now except giving him opportunities maybe once a day to explore a regular cup or try a straw cup if that is better from a dental and oral input standpoint. Some of those things, like stacking rings and stuff, if he's not into it what why not work with him on something he is into and build from there? What does he like, can you sit with him and do that and then maybe help encourage him to expand on that play? Along that line, Have you ever heard of floor time or Stanly Greenspan or this book http://www.amazon.com/Child-Special-Needs-Encouraging-Intellectual/dp/0201407264/ref=sr_1_1?s=books&ie=UTF8&qid=1326480028&sr=1-1 ?
I actually think Genetic testing is a good idea for any child who has developmental delays. We found ours helpful and informative. Might be something to do once you get insurance if you are comfortable with it. It's just a blood test.
Also sorry if this sounds too wacky to you but with you having Celiac disease he would probably be a really good candidate for the GAPS diet and it would likely be very helpful to you too. http://gapsdiet.com/ We were gluten and casein free for years and that helped a lot and then we started changing to GAPS which is still gluten free (grain free actually) but has some casein in the form of cultured dairy and that was really helpful for my daughter.
RE: I am new here. Need help - beck7422 - 01-14-2012
I agree with Angela that it will be OK.
At 18 months, I am not sure I would be terribly concerned about clumsiness and falls, but if they continue even after you work on hand eye coordination and balance then he should be checked for Neuromuscular Disorders (probably included in some of the genetic testing done). A diagnosis in this area isn't the end of the world, it just lets you know what things you can do to help your son at a young age live as "normal" a life as possible. I have a rare genetic disorder that runs in my family. I was "normal" until college. Poor diet, too much stress, and genetic predisposition all connected to make my condition annoying starting in college. I was ALWAYS clumsy as a child even though I was "normal". I had all sorts of weird quirks, but so did everyone in my family so they didn't stand out as abnormal until college.
It doesn't sound like your son has Autism from your description.
Taking your son to a playground should be fine. Him getting grubby won't hurt him no matter what health condition he might have.
If your child ends up with a positive test result for a Neuromuscular Disorder or any rare genetic disability, contact the Muscular Dystrophy Association. They will help make sure your child gets proper care even if you don't have insurance. There are similar groups that exist for some of the more common conditions like Cystic Fibrosis or Cerebral Palsy. A diagnosis will help you get the help you need. The bigger challenge is if your son doesn't have a clear cut result leading to years of doctors going "I don't know", that is when a condition gets expensive and difficult to treat.
As far as your son not playing with the exact things all other children supposedly play with at his age, play with him with other things. Some things are just not interesting to a child. Even when they are "normal". Everyone is different, and a guide is just a suggestion not the bible.
RE: I am new here. Need help - Cindy - 01-15-2012
Thank you for helping us.
I ordered the book and also some other that EI evaluator suggested to me
I read some of the GAPS but I didn't understand it.
We eat organic and gluten free. The meat and chicken are hormone free,....
The eggs are cage free.
My son drinks organic milk. My milk is lactose-free.
I have been using vinager to clean the flooring.
But still use heavy chemicals for bathroons.
RE: I am new here. Need help - AngelaVA - 01-15-2012
(01-15-2012, 01:14 AM)Cindy Wrote: I read some of the GAPS but I didn't understand it.
We eat organic and gluten free. The meat and chicken are hormone free,....
The eggs are cage free.
My son drinks organic milk. My milk is lactose-free.
I have been using vinager to clean the flooring.
But still use heavy chemicals for bathroons.
It's a lot easier to understand if you read the book. Basically the doctor's theory is that people with neurological and other disorders can be helped greatly by healing the gut and she prescribes a healing diet which discourages yeast and negative bacteria and encourages healthy bacteria growth. It cuts out all grains and uses almond meal and coconut flour instead for baked goods, which you are supposed to have only occassionally, you are supposed to eat mostly vegetables and meat and meat broths/stocks, some fruit and use raw honey as a sweetener, and only fully cultured dairy e.g. yogurt has to be cultured for 24 hours, there are more details but that is the gist of it. Honestly it sounds like you are eating pretty well already and is probably going to be too much information overload right now if you are reading a bunch of other books. I was just thinking if you are doing a lot of waiting on insurance issues it might be something you can do without needing insurance or medical help.
RE: I am new here. Need help - Tuttleturtle - 01-23-2012
Nothing is wrong with him if he's diagnosed with either SPD or autism. (Though I'd agree that if he has no issues with eye contact he's less likely to be autistic). Either way, he will still be your little boy, he'll still be able to grow up happy.
Don't love him any less if he's not normal. Just support him. Just do what he needs of you. Just love him for who he is, don't hope that he's something else.
Your description does sound like he has a lot of traits associated with high functioning autism, but also like I'd not expect him to be autistic - you don't mention anything other than speech in terms of difficult communicating and there tends to be things there.
Nothing is wrong with you. Nothing is wrong with him, even if he's developmentally different. Even if he's autistic. Even if he has SPD. Even if he has some other thing they can find in genetic testing.
Ask questions from people who know what its like to have what he has and parents of them, once you figure out what's going on. And then just try not to worry and try to do what you can for him.
-An autistic adult with SPD.
RE: I am new here. Need help - alessio - 01-24-2012
First, breathe. He's still the same little boy. The diagnostic process is just to help him, not to say there's anything wrong with him or with your parenting.
It's a good idea to do genetic testing, just to rule anything out. You said he had abnormalities on his CT scan, has he had an MRI? Sometimes those can catch more of what's going on in the brain. Also, testing can help find a specific condition that he might have, and then if it's a more common condition, there's help from groups supporting people with that, even without insurance. If you're in the United States, your state might have some sort of insurance for children.
Even if he has a few challenges, he's still your son, and he still has a lot of hope for the future!
-An adult with polymicrogyria and SPD