i have a son with sensory issues, cogntive delays, speech, and others they say he isnt autisic i worry what does this mean for him. he has to dovwhat the OT calls hard work to be able to sit down to eat. i think its uarder because it doesnt have one name and a straight way to help there is so many things going on anyvmom going through this?

Cherish - posted on 07/01/2012

Hi,
I used to trip about what was "wrong" with my son(before he was diagnosed).It does not really matter WHAT he has tho,just "treat" the symptoms(like therapy).
Low tone makes it hard for them to chew(Brian did not chew his food until he was 4 or 5).
There are SO MANY different syndromes/disabilities/labels.
Things that look like autism are fragile X,angelman,williams syndrome,mito disorders...etc
Have you had a MRI?(I THINK that can R/O CP(?)
I would ask the pediatrician to give you a referral to a developmental pediatrician,a neurologist and geneticist.

Have you read "the out of sync child"(that book is super for sensory kids) or "just take a bite"(loved that book for explaining feeding issues),and kids w/tone and sensory issues go thru ALOT to eat,you should read that book.

But seriously a "label" do not necessarily make anything easier,sometimes labels make things more discouraging.

Katrina - posted on 06/30/2012

Michele Julius-Gianetti -
Hi I have a daughter who is 15 and has SPD of sensory issues, with speech delay and dyspraxia. She was diagnosed at 2 and has made wonderful gains in her life through therapy. I would be happy to talk anytime..please visit my facebook page to read about her. It is I Believe In You: A Mother and Daughter's Special Journey.

Or you can go to my website to read more. www.michelegianetti.com Please contact me if you wish

(I wanted to say thank you the support really helps I have to say its adventure never knowing what kind of day we are going to have)

Michele - posted on 06/30/2012

Hi I have a daughter who is 15 and has SPD of sensory issues, with speech delay and dyspraxia. She was diagnosed at 2 and has made wonderful gains in her life through therapy. I would be happy to talk anytime..please visit my facebook page to read about her. It is I Believe In You: A Mother and Daughter's Special Journey.

Or you can go to my website to read more. www.michelegianetti.com Please contact me if you wish

Iridescent - posted on 06/09/2012

You need to ask for a referral to a genetic doctor. You can also have a few other disorders ruled out/tested for under a good neurologist. An MRI would typically be recommended to rule out brain abnormalities. Labwork to check for metabolic and/or mitochondrial disorders.

Katrina - posted on 06/06/2012

i hant tested him yet do i ask the regular pedi doctor for that or do i go to a gentic doc

Katrina - posted on 06/06/2012

i hant tested him yet do i ask the regular pedi doctor for that or do i go to a gentic doc

Emily - posted on 06/06/2012

the low muscle tone and developmental delays sound a lot like fragile x syndrome. so far you haven't said anything that doesn't sound like it's related to fragile x syndrome, and your regular pediatrician can refer you to a genetic specialist or to a hospital that does that testing. 1 in 88 children with autistic like tendencies are diagnosed with fragile x syndrome. what sorts of things set off your son when it comes to anxiety and tantrums? have you narrowed down some of the stressors? for my son it's loud noises, or when he's over stimulated, when there is too much going on around him, transitions are tough for him to, when going from one task he wants to do to something else, or when we go places, he often has fits as we are getting ready because he doesn't know what's going on. some things we do in the classroom for my son are to try and do as much as we can to eliminate those triggers. one of the toughest times for him is when kids are being dropped off or picked up from school, so we have arranged with the school to pick up and drop my son off after and before the other kids. it works very well. having a solid IEP is always a great start it gives the teachers and staff a reference to dealing with behavioral issues and things that will help your child to be more comfortable. because realistically that's all we can do is adapt the world around our children to make them more comfortable. and yes it's very hard when people don't understand why your child is having a tantrum or acting different. my son has behaviors that are very different from other children, his step sisters have had a hard time with him and it breaks my heart when they look at him like there's something bad or wrong with him. I have found that explaining to the kids that his brains works different and that he needs help doing things because he doesnt understand things like we do has helped a lot. educating those who interact with my son has helped, they don't always completely understand but it helps with the stares....

Katrina - posted on 05/31/2012

My son is 2 in a half he will be 3 in sept. Thank you Emily i will ask the doctor about the x syndrome. Can i ask his normal doctor or do i need to go to a different doctor. Thank you for your responding to it.It helps alot. That's nice to hear that the school does that. I worry alot about him being able to make it in school because of these things.I hate when im at the park and other moms and kids are saying whats wrong with that kid it breaks my heart. Right now he gets speech therapy and gets OT. He is getting help with his muscles.
He has low body tone and low tone in his jaw so he has speech problems and drools. He also is getting help with food.The OT will bring food for him to try. He has gets help with his hand muilplation.Not sure how to spell that.
They are trying to teach me ways to calm him down or more teaching me to teach him to calm down. Right now they are talking about meds. I don't know what age that will be when that changes.I just want him to be able to do things he needs to do make friends be able to show everyone else what a sweet boy he is. I hate people judge by the way he gets some times it not fair he is such a sweet loving boy.

Emily - posted on 05/30/2012

have you tested for fragile x syndrome? sounds a lot like my son. there are a number of issues that cause challenges every day. all of the things you listed plus behavioral issues. he takes a combination of medication that help with several issues, but not all. some just have to be worked around, there are a number of activities that we as a family just don't do because they over load sensory issues my son has and cause severe melt downs. the school is on board and on days when there are things going on that will over stimulate him he is sent to another SDC class or sent home. its very tough, my heart goes out to you and your family because i know how challenging all those issues can be. I have a brother who is 16 also with fragile x syndrome so we kind of had an idea of what life would be like, but nothing really prepares you for all the issues our children will have as they get older. how old is your son? what services are you currently getting, behavioral medication therapy?