Join the Meeting Place for Moms!
Talk to other moms, share advice, and have fun!

(minimum 6 characters)

Raising Special Needs Kids Raising Special Needs Kids

I don't know if I belong here but I don't know that I belong anywhere

Posted by on Jul. 10, 2012 at 3:16 AM
  • 31 Replies

My son has never been... "normal" whatever that means.  This could be long so bear with me.

When he was a baby he never wanted to be held.  He just wanted to look around.  Don't hug him, don't kiss him, don't cuddle him.  The sound of Elmo's voice set him into screaming fits and that was at less than 6 months old!  The store was a scary place to go with him because there are so many elmos out and he could hear them from a few aisles away.

He was always ahead of where he should be.  At 3 months he played with 6 month toys.  Crawled at 6 months.  Walked across a room at 8 months but he fell and didn't even attempt again until 1 year.

He's never had any stranger anxiety.  He started talking young and by 1 year he was using sentances.  They were pretty easy to understand too.  People were shocked at the extent of his vocabulary and how well he could speak.

At 18 months he had an ear infection brought on by allergies.  The doctor gave him bright pink antibiotics.  He took the first dose and was bouncing off of the walls!  He was quite literally jumping up and down and hurting everybody within reach.  He didn't sleep for a week either.  The doctor prescribed something different and we have avoided dyes ever since.  I can tell when he accidently gets some.  We lock ourselves at home and I've almost come to the point of sending my daughter away for the week he is so violent and out of control.

He just turned 5 last month.   I've been seeking help with him since November.  I used to teach preschool but I just can't figure him out.  I don't know what to do with my own son!  My daughter is exactly what I expected from a child but my son... he's like none I have ever known.

He has meltdowns.  Full out meltdowns.  Screaming, crying, yelling, hitting, kicking, throwing things meltdowns.  They can last for 4 hours.  He calms down a bit but is so on edge that anything starts it again.

I KNOW he has sensory issues.  He can't be in a small space.  He can't have water splashed on his face.  He's ok with swimming pools and wet washcloths but sprinklers, slip and slides, washing his face at the sink, drinking fountains, etc. forget it.  The other night I cut his hair and he was screaming and crying that the cut hair was hurting his neck and chest.  He can't have things around his wrists either.  He went to VBS and they put an allergy alert wristband on him.  I came to pick him up and he was wiggling around pulling at it.  The minute he saw me he started asking if he could take it off because it was hurting him too bad.  It was so loose we were able to just pull it off over his hand.  Thankfully there was a school teacher there who had experience with kids with sensory issues and was understanding.  I packed all of his own food anyways (he has a lot of allergies) and he knew to only eat what I packed.

He is afraid of so many things.  And I'm not talking just being scared and not wanting to do it.  I'm talking full out heart racing, short of breath, eyes big fear.  Pretty much anything new terrifies him like this.  Climbing trees, bugs, heights, the thought of small spaces, water, cars, I could go on and on about his fears.

It's like we are always walking on eggshells trying to avoid a meltdown.  He was gone tonight and we sat down and watched Toy Story with dd (he is terrified of any movie that has a villan, violence, name calling, etc).  Dinner was a little late and it didn't result in a meltdown.  Then on the spur of the moment we went outside and fed the animals.  We didn't feed them in just the right order and in just the right way.  We just did it however we felt like.  We went to water the plants and ended up showing our daughter the plants and everything they grow.  We talked about blooms and how they turn into produce we can eat.  We ended up running through the sprinkler together.  Hubby started spraying her feet when she was trying to run after him with a bucket of water so we got out the umbrella and she was using it to block the hose he was spraying her with so she could get close enough to pour the water on him.

We just had so much fun and it was so spontaneous.  It makes me sad that I can't do things like that with my son.  With him it would have been go outside, feed the animals in just the right order.  Water the plants in just the right order.  Make sure the water spray doesn't touch him at all and come back inside.  I can't even sit on the floor and play with him because he won't let anybody play!  It's more of him dictating what must be done and me just feeling like a bored slave.  If we do paint he goes nuts and starts flinging it.  We did it outside one day just so he could truly explore it.  See the result?

it set him off for sure.  The rest of the day was unbearable.  But at least it was easy clean up and he had fun.

So here I am with a kid I can't sit on the floor and play with.  I can't do art projects with him.  I can't play in the water with him.  We cook together a lot.  We do science projects.  He is VERY smart and I homeschool him.  We read books together and he reads them to me as well.  But it's so hard not being able to just do spontaneous things with him.  It's hard not being able to just get out and have fun and play without worrying about setting him off.  And it's hard not being able to help him so he can be a kid and enjoy his childhood.  All of this holds him back so much.

I took him to a developmental pediatrician who is awesome.  He has a son who has adhd and autism.  He spent 11 years trying to get a diagnosis for his son when he was an OB.  He suggested an autism screening but when they observed him he was this perfect angel child.  I have since learned that in public he copies other kids.  He says he has a hard time understanding what people say.

The developmental pediatrian thought he was missing a piece of the puzzle and referred us to a neurologist.  The neurologist was 3 hours away and the appointment was early in the morning.  We ended up getting a hotel room we couldn't really afford because with work traffic we would have had to leave at 3:30 in the morning to get to San Francisco.  The neurologist left us waiting forever.  By the time we finally had our appointment we had been moved into a different waiting area because my son was melting down in the hallway so badly.  The whole appointment he was bouncing around the room not behaving himself.  The neurologist basically asked me what my top 3 concerns were then wouldn't listen to anything else I had to say.  He brushed it off as a minor case and said he only handles kids who are extreme enough to need medication.  He didn't even care to listen to the concern the developmental pedi had which was kernicterus caused by his high billiruben levels after birth.  So all of that was for nothing.  He told me to call behavioral health and regional center so that's my next step.

I have fought so much with this kid.  At 3 months old his unbilical cord hadn't healed and the doctor wouldn't listen.  3 days after his appointment I was in demanding he do something because it was bleeding and looking so bad.  It took 4 silver nitrate treatments to seal it.  At 1 year he had constant stomach aches and diarreah.   6 months of fighting with the doctor and we ended up at a specialist.  Finally figured out it was food allergies/intolerances.  At 3 1/2 he started having groin pain at night.  We've been through so many doctors and even the top urologist in the state.  Nothing is wrong physically to cause the pain.  He also has pain when he urinates.  I took him back to the chiropractor and it seems to be helping thankfully.  He urinates frequently and leaks into his underwear.  He has to change his pants at least 3 times a day because the smell gets so bad.  Once again nothing physically wrong.  We are going to attempt physical therapy next which is once again 2 hours away.  HIs first appointment is Friday.

I just feel so lost, so alone, and like I don't have anywhere to turn.  Is it me?  Am I doing something wrong?  Why can't my little guy just enjoy life?  And what is wrong with him?


Being a full-time mother is one of the highest salaried jobs in my field, since the payment is pure love.  ~Mildred B. Vermont
by on Jul. 10, 2012 at 3:16 AM
Add your quick reply below:
You must be a member to reply to this post.
Replies (1-10):
meandG2012
by on Jul. 10, 2012 at 8:23 AM

my son has autism and is also afraid of EVERYTHING!  i feel a lot of the same ways as you do.  he can never enjoy himself because of his fears.  its the most heart breaking thing i have ever experienced.  i hope as he gets older, things will get better.  his meltdowns are severe and often.  i also feel guilty because my 2 year old cant do things for fear of setting off my 4 year old.  its so hard to navagate when your not shure what a new thing is going to make them feel.  i dont know if you should try to force them to participate and just deal with the meltdown or let them stand in the backround and not have any fun.

CameronsMommy23
by on Jul. 10, 2012 at 8:39 AM
That pic is adorable!!

Welcome! I'm sorry to hear that you're having such a hard time with your son. Sounds like you're doing great with him! Just hang in there. *Hugs*
Posted on CafeMom Mobile
natesmom1228
by on Jul. 10, 2012 at 9:21 AM

HI and welcome to the group

mandee1503
by Amanda on Jul. 10, 2012 at 10:24 AM
Welcome to the group!
Posted on CafeMom Mobile
Elyssa414
by Elyssa on Jul. 10, 2012 at 10:37 AM
You're in the right place! I hope the new referral can get you a full neuropsych eval! Sounds like there's definitely something everyone is missing. :(

In the meantime have you tried completely eliminating gluten and caesin? It's hard to do, but it he's that sensitive to dyes, I just wonder if if a GFCF diet would be beneficial? It helped with my son's rages even though they were caused by seizures- I don't know why
Posted on CafeMom Mobile
sammygrl77
by on Jul. 10, 2012 at 11:33 AM
Welcome to the group!

Have you tried OT? It has been amazing for my youngest with sensory issues.
Posted on CafeMom Mobile
JasonsMom2007
by Member on Jul. 10, 2012 at 11:49 AM

No, I don't have a diagnosis yet to seek therapy :(

Quoting sammygrl77:

Welcome to the group!

Have you tried OT? It has been amazing for my youngest with sensory issues.



Being a full-time mother is one of the highest salaried jobs in my field, since the payment is pure love.  ~Mildred B. Vermont
DixieL
by on Jul. 10, 2012 at 12:01 PM

I am so sorry for what your family is going through. Both of you kids are adorable. I so much wish I could help you. There has got to be a doctor out there who can help you. I can hear in your words how much you love him and how this is breaking your heart. When you try physical therapy let us know how it goes. You are all in my heart and prayers. I wish you and your family the very best of luck

lasombrs
by Member on Jul. 10, 2012 at 12:08 PM

My son has autism (we only just found out friday) and does a lot of the same things. We got tossed from dr to to as well for it and ended up with a behavorist in Manchester NH (mentioning since I see you are in VT) that diagnosised him friday.

But its certainly not you! My son also has an auto-immune disease and we got tossed around and ignored for almost a year before that was diagnosised. We ended up at CHaD Lebanon on the VT line and they told us what he had, but then said our pedi was capable of taking it from there and only photocopied a few pages from a book for us!! Our middle of nowhere NH pedi was not anyway near capable of taking care of him and we now go to Boston for it. Lebanon was definetly a trip for us since we live near the Maine border of NH. I think doctors almost think its fun to waste your time :/ The nurologist we saw asked us why we were even there and told us he wasn't the person to see and that was it. And we waited 3 months for that appointment! Why didn't they say so when our pedi sent over the referral? So they could get paid for doing nothing is all i can think of. Never mind wasting months of our time and pushing us even further away from finding what was wrong.

Anyway. its not you. Just seems like everyone bangs their head against the wall for this stuff.


Oh, and side note. My son had a lot of the same urinary issues, and eventually had a few drops of blood after he finished peeing. That finally got us to a urologist who did ultrasounds and determined his urthrea was to narrow. So even though his bladder was fully draining the urine was still staying inside because everythig twisted and turned so tightly it could not drain properly. Which led to constant irritation on the inside because urine isn't supposed to sit there. He had surgery at 14 months old to make it wider. But they could not widen the whole thing and said it could be a life long problem. But since the surgery he hasn't cried going pee for almost 2 years now. Maybe just once or twice instead of every single time

sammygrl77
by on Jul. 10, 2012 at 12:08 PM
The OT will do an evaluation and can help with a diagnosis. You don't need a diagnosis for them to help. My dd's ot was the one who diagnosed her with sensory and then worked with her on it. Over the years of being at a clinic 4 days a week, I've seen some pretty amazing results from various children in ot. Ds's ot shared a room with another ot. I remember one child that didn't even want to be in the therapy room while we were there. Within a couple months he was playing games with my dd and ds and wanted playdates with them.


Quoting JasonsMom2007:

No, I don't have a diagnosis yet to seek therapy :(


Quoting sammygrl77:

Welcome to the group!



Have you tried OT? It has been amazing for my youngest with sensory issues.



Posted on CafeMom Mobile
Add your quick reply below:
You must be a member to reply to this post.
Join the Meeting Place for Moms!
Talk to other moms, share advice, and have fun!

(minimum 6 characters)