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What is the greatest need in the special needs community? - Page 2

post #21 of 25

Taximom, your story really struck a nerve with me.  In terms of what services are needed -- I would like some third party to check and audit the school to make sure the school is following my child's IEP.  I am tired of stalking the playground with weak excuses just to make sure she really is playing with other kids instead of sitting on the ground by herself. 

post #22 of 25

I heartily echo everything that's already been said, and this is related to many of those issues. I would like better education and professional development for the people most likely to see children early on in their journey. To close the gap between what is known about early diagnosis and intervention, and what gets transmitted to families trying to find their way.


When I brought my son to our state's Early Intervention at about 5 months old, because he didn't make eye contact and wasn't interested in people's faces, I was told that "older parents" today read too much and see things that aren't there. I was also told that oh no, that's not autism, autism is when they can't point by age 1.


It's like they had not been exposed to any updated information more recent than at least 10 years.


(Today, he is almost 2 1/2 - no official diagnosis yet, but definitely on the spectrum.)

post #23 of 25
Originally Posted by Lollybrat View Post
I was a Stay At Home Mom while he was a toddler and preschooler, but with changes in the economy we can no longer afford that.  So now my husband and I both work full time.


Lollybrat just wanted to give you a BIG HUG!!!!! :( The thought of putting my ASD child in a regular daycare terrifies me.

We struggle greatly without me working but we couldn't pay for childcare if we wanted to (I have 3 kids, one with classic autism, and "regular" daycare costs between $250-$350 a week per kid where I live, which would be roughly $3,000 to $4,200 or more a month so I probably wouldn't even make enough to cover the cost of daycare.


My best friend's dh has family in Australia, and apparently, there you get $5,000 everytime you give birth to a child, AND you get a few hundred bucks a month for each child you have...NOT even special needs kids but "regular" kids!!!!!!!!!!!! I told hubby I wanna move to Australia!!!!

post #24 of 25

My son has a shot, a very distinct shot, of graduating from special needs.  However, we ned help to do this.  For 3 years, we've traveled the therapy route in early intervention.  He got physical therapy first and I am proud to say that while he walked independently a little late, it was still barely within normal limits.  Yes, we had 3/week PT to get there and countless hours of homework, practicing, but dangnabbit, he got there!  And then the OT.  He has sensory needs (sensory seeking, vestibular and proprioceptive) and adaptive issues, so OT came out.  When we moved states, OT stopped, different qualifying rules.  And then speech.  He was a very late talker (2.5) with regressions in his infancy and toddlerhood (4) but when he finally talked, my son yammered away.


All that we have left are his feeding issues.  It's where oral apraxia, oral sensitivities, oral defensiveness, eosinophilic esophagitis (inflammation of the esophagus causing swallowing issues), and failure to thrive all come together.  He's three (tomorrow!) and we are graduating from early intervention to school-based services.  And schools don't address this ....


My son is in daycare, a wonderful, amazing daycare I pay through the nose for, growing and challenging himself and others completely.  Mealtimes, though, are too nice.  If he doesn't want to sit down and eat, he doesn't.  He so needs a sit down classroom with verbal feedback on approprate behaviors.  He needs oral-motor therapy where the weaknesses in his tongue and mouth can be addressed.  He needs sensory play with food so he can get used to different textures of food.

Because my 3 year old son still drinks 100% of his calories with food as a hobby.  Were he to already have a G tube, services.  But without, no go.  No matter that he has struggled with feeding issues for his whole life, no matter.  I am a single mother and the nearest private pay feeding therapist is 90 minutes away.  I work, to keep food on the table, a house, clothes on his back.  We are middle class -- and I can't get services through the school system.  I can't afford to leave work for 4 hours each week to get him to therapy.  And I simply do not know what to do to help.  We have a plan, the doctor and I:  get him to 25th percentile weight wise and start weaning the Pediasure.  in the meantime, I need his mouth working great.  I need his mouth practiced, efficient, everything and if the stars all align, I think he stands a very good shot of finally, finally, finally being able to eat enough to maintain weight, possibly even grow.


Our insurance, Early Intervention, and school-based service system has issues.  Primarily, they are on such a warpath against the hyper-reactive Mommy who says Johnny isn't enunciating his Rs correctly and wants 3/week speech, that they make it so hard to get services for children who seriously, sincerely need them.  I get it.  But I sit here with a child with a documented feeding issue since he was 35 weeks gestation (like many other special needs children, he was a very early preemie).  And it has taken this long, with input from many therapists, a feeding clinic, a neurologist, and a developmental pediatrician along the way ... this is not a frivolous venture.  All I am trying to do is help my child become a normal child.  He's almost there and all I need is this ONE last therapy to rid him of prematurity's vestigial tail. 


Until the next issue arises, of course.  Prematurity seems to like to sucker punch the parents a lot ...

post #25 of 25

The biggest need I have found in the special need community is advocacy. We had major issues with my sons school. As my sons parent I felt it was important he be in a traditional kindergarten classroom. They refused to allow him to go into a traditional classroom. We ended up hiring a lawyer because the school was so uncooperative: http://csnlg.com/  It was the best decision we ever made. So I would say advocacy for the right of special needs is important so every knows they are entitled to certain rights like everyone else in the world. 

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