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Children with Developmental Delays

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Kelli - posted on 12/07/2008 ( 3 moms have responded )

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My 3 and 1/2 year old son has global developmental delay with a sensory component. He was diagnosed with speech delay at 21 months and we entered the early intervention system. We had him further evaluated and found out he also needed OT, PT, and developmental therapies. It was so hard to take it all in, but we immersed him in any therapies EI recommended and could provide. When he aged out of EI at 3, he entered a blended preschool program in our school district that has been amazing. We augment the school therapies with private therapies over the summer. We are very fortunate to live in an area with strong services for special needs children. I can speak from experience that I was very frustrated at times however, my little guy has made tremendous gains and does appear to be catching up.

He also was diagnosed with a rare but benign visual disorder known as "spasmus nutans" at 9 months old. The symptoms include nystagmus (beating of the eye), head bobbing and head tilting. The cause is unknown but the symptoms decrease over time (this has been the case with my son). We were followed by an opthalmologist until therapists in the early intervention system referred us to a developmental optometrist. We owe so much to this doctor who recommended not only vision therapy but eventually put my son in glasses and this has been a tremendous help to him. My son has had sensory issues (primarily visual) and working with the optometrist and vision therapist really helped.

All of the therapies as well as a lot of work at home have really made the difference not only with his motor skills and his speech development, but with his sensory integration as well. My best advice is to be the strongest advocate for your child/children that you can be and fight for whatever you feel they need. I had some dark days when this all started, but I can say that things can get better. He has come really far and we are so grateful for that.

I am embarrassed to admit that I am a PT and I put off evaluating him because I kept telling myself he would talk, walk, etc. If you have even the slightest inkling that something is wrong, ask your pediatrician for a referral for therapy evaluations.

I would love to hear anyone else's stories and offer guidance where I can.

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Carol - posted on 01/28/2009

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My 2 3/4 year old son has a global developmental delay.  We have been involved with OT/PT/speech therapy and early intervention for about a year.  At this stage, the intervention is home based.  We visit various programs every 3-6 weeks and go home with a set of things to work on.  We do exercises at home, and he also gets 'hit and miss' help at daycare.  I have a 3 month old and my husband and I own two businesses so we do what we can, life is very busy!  In the 1+ year timespan he has progressed, but painfully slowly, we are still working on many of the same goals as we were a year ago.  He doesn't walk, has a kind of 'bum scoot', but will walk with a sturdy walking toy and creep along furniture/ walk with one hand held.  He doesn't use any words.  I used to think he sort of said 'mum' but now I'm not so sure.  Fine motor is clumsy, but he is very good at pushing buttons to make a toy/the tv/the computer make a noise.  He is such a happy, loving little man.  I love him to pieces but I want to help him progress!!!  What do you think helped your little guy progress the most?  I know that no two children are the same, but I would like to hear either specific activities/exercises or general 'theories'. 



Thanks and I hope your little one continues to make gains!

Kelli - posted on 01/21/2009

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You're welcome - I am glad it was helpful.  We have been through so much with him and it really helps when I have people to share it with who understand.  We live in the northwest suburbs of Chicago.  I was happy with the state of Illinois early intervention program that covered him until he was 3.  He got whatever he needed without hesitation and I really appreciated that.  We are very fortunate to be in a very good school district and so during the school year all of his services are provided at school.  I take him back to the clinic where most of his therapies were during early intervention each summer.  Our school system also does a 3 week summer program to keep the kids on track as well.   How old is your son? Keep at the PT - I know it isn't fun sometimes.  I had days where I had difficulty watching because my son was so uncooperative.  Now that he has been in therapies for so long, he participates well and actually seems to enjoy it.  

Abigail - posted on 01/19/2009

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Thanks so much for this encouraging story!  I actually still hate going to the Physical therapist, and wonder if I have to 'cause he is only a little delayed, but it's great to hear how much the services helped you.  What area is this with the cool services?  I am near DC, and you'd think they'd have a lot, but I am not finding them very accessible.

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