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The root (sorrrrry so long)

Forum: Children with Developmental Delays and Disorders


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October 16th, 2012, 10:38 PM
Join Date: Feb 2012
Posts: 25
I'm going to introduce my DS before anything. My boy, Kaeden, is 5 years old and is a very energetic boy. He has recently been diagnosed with ADHD.

I started noticing that Kaeden wasn't hitting his milestone when he was baby. Flipping over, sitting up, crawling was all late. He walked at a year, but his ped said it was normal for walking at a year. After he turned one, all hell broke loose. He wasn't making a sound, but a constant "nnnnnaaaaaaaaahhhh" when he wanted something. When I couldn't figure it out or I told him no, he would literally bang his head repeatedly on the floor. Most of the time, it would leave bruises on his forehead. At 2, he still wasn't saying anything, but that constant whine when he wanted something. He also would not look anyone in the eye and was very afraid of loud noises. He had surgery on his behind for MRSA staph infection right after his 2nd birthday. My sister bought him a sunshine balloon. He would not go to sleep unless that balloon string was in his hand. If he didn't have the balloon in his hand, he would shake and cry, until he had, because he was afraid the balloon would pop and make a loud noise.

At Kaeden's 2 year old checkup, his ped told me that he was fine and not to give in to him when he pointed and whine. He said that I wasn't making him work for what he wanted. I was pissed when I left his office, because I wasn't about to let my child be thirsty and not give him a drink until he said it.

At 2 and a 1/2, I didn't even contact his doctor. I got a hold of the early intervention program and he qualified for speech and developmental therapy (which I think is similar to Occupational therapy). He did so good with the speech therapy and actually said his first word about a month after the speech therapy starte, which was boat. He did 6 months of therapy. His speech therapist was a really nice woman and I talked to her many times about autism. She said that Kaeden did not show signs of autism.

After the 6 months of speech and developmental, we started a SP ed preschool with our school district. He had speech therapy 30 minutes, each day, which was 2 days a week that he went to preschool. He slowly improved over the year and he was speaking about 30 words by the time he was close to 4. When he started the first year of preschool, they had mentioned something about wanting him to be evaluated for OT, because he's not using his hands right.

By the time he was 4, he started the second year of SP ed preschool with speech therapy. He was doing amazingly well. He was speaking in 2 to 4 word sentences. He was telling his teachers and therapist stories. All of teachers said he definitely improved so much.

He started Kindergarten this year and he qualified for speech therapy as well. After about a week of school, I talked to his teacher and she said that she was concerned with his fine motor skills. He's not able to figure out how to hold a pencil or fork correctly. His teacher and I have both been working with him on how to write his name, but it's like he's not getting it.

He was diagnosed with ADHD (both inattentiveness and hyperactivity) this past summer and was put on a low dose of dexadrine. It has helped him a lot, but once he gets home, it is horrible. It's get overly emotional. He is becoming obsessive about his finger and toe nails, where he picks them until they are in the quick. I am worried about him. His speech therapist at the school said he may have some sensory issues, with the horrible temper tantrums and sensitive to noises.

I feel like his dr is putting me off. I recently took him to his doctor and basically, she put in to get a complete evaulation. He already had a PT eval, which he is the 11th percentile and he had to be in the 5th percentile to quality. We have his speech and occupation evals friday. But his dr didn't say one thing about trying to find why he is so behind in some areas. I want to find out if there is a reason for his developmental and speech delays. I want to find out if there is a root to all of this. And I feel like people are looking at me as if I want something to be wrong with him, which really, I don't. I'm frustrated, because it's like people aren't listening to me.
Me - Dicia (26)
DH - Steven (23)
DS - Kaeden (6)

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October 18th, 2012, 12:27 PM
Carwen*Angel's Avatar Fly away on my zephyr
Join Date: Feb 2006
Location: Manchester, UK
Posts: 66,539
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welcome to the board!

Im sorry to hear youre having such a struggle trying to get the right help for your boy. Delays can be tricky to diagnose and it can be quite a journey. My son was diagnosed with high functioning ASD at the age of 4 and he too had speech delays, motor skill issues, and odd anxieties and obsessions. Mother's intuition is rarely wrong and youre right to keep pushing for answers to get the best for your son. You could also question whether the medication is the right one for him if its made things worse in some respects. There is some good information in the autism 101/delays information sticky including a link to the my child without limits websiite, which lists various devt delays and their symptoms, you may find it a helpful starting point.

I hope you will stick around and share your journey. Some very wise and supportive ladies visit this board.

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October 18th, 2012, 01:25 PM
Happy Song's Avatar Nicole
Join Date: Jan 2010
Posts: 11,023
In child development I ma seeing a butterfly effect. If one little thing is off it all sorts of things can be affected. We just discovered my son has very poor vision and it has completely affect so many aspects of his devlopment that he might be Autistic or he might be blind.

For your child he is a special puzzle for you to unriddle and push in every way you can for his best interests.

Good luck!
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October 18th, 2012, 04:47 PM
Hazel's Avatar Mega Super Mommy
Join Date: Jan 2011
Posts: 2,679
Your son sounds a lot like my oldest last year we got a full evaluation through the school for an IEP so now he gets some OT for his hands to strengthen them and get them working properly. His handwriting is still not pretty but it has been improving The OT also diagnosed a sensory processing disorder--my doesnt register many sensations so a lot of his hyperactivity is him seeking out sensations to make sense of the world. Spinning, flapping, touching, etc. He gets sensory breaks at school and it helps.

I dont think we'll ever know the root of it all--there are theories, of course, but I doubt we will ever know for sure.
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October 18th, 2012, 05:09 PM
Spyctre's Avatar Arwen
Join Date: Aug 2009
Location: Freaking Louisiana
Posts: 9,231
I can also relate! It is really frustrating getting people to believe you in the beginning.

My oldest is Autistic, but we've never had a diagnoses from a doctor. I ended up going to someone for an evaluation because her doctor kept looking in her ears and saying nothing was wrong. Cause that's all an ear is, you know, what you can see in the opening. =P We were also told in the beginning when she was 18 months that she definitely did not have Autism. She actually makes eye contact so she can't possibly have it. By the time she was 3, I guess the condition "matured" or something because she has a full case of it now! She also has a sensory disorder.
James Arwen est. April 2, 2005
Alice Marie - January 9, 2008
Winter Rose - February 14, 2012
Liliana Vale - September 25, 2013

Daniel Constantine - July 19, 2016
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October 19th, 2012, 05:26 AM
Carwen*Angel's Avatar Fly away on my zephyr
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Location: Manchester, UK
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they dont need every symptom on the list to be autistic so i cant believe they said that to you arwen! daniel is very imaginative, he makes up lots of stories and is able to play creative games, which is atypical, but autism is still the best fit diagnosis for him.

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October 31st, 2012, 12:37 PM
Join Date: Feb 2012
Posts: 25
We got the OT evaulation report back. The therapist said that he very little muscle one on his shoulders, which is causing his left arm and hand to be weak. He is a lefty, but he is trying to use his right hand for everything, but writing. She also said that he has a problem with eye convergence, where his eyes jump around on the page, instead gliding across the page, which he also has low tone in his eyes as well. He is being referred to a pediatric developement vision specialist to see if he needs glasses or vision therapy as well. He is getting therapy 2 times a week at the therapy center and 2 times a week at school. He is actually getting the help that he needs. I'll update more later. Thanks for replying and letting me know that I'm not alone in this.
Me - Dicia (26)
DH - Steven (23)
DS - Kaeden (6)

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November 1st, 2012, 12:30 AM
shanirah's Avatar Mommy Strawberry
Join Date: Aug 2011
Location: Colorado Springs
Posts: 3,505
It's been so long since my two were diagnosed but it is hard to get what they need when no one listens. Honestly I would be finding a new ped. That is just lazy in my eyes, to not listen.

“First things first, but not necessarily in that order.” The Doctor

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November 1st, 2012, 01:26 PM
Adriana's Mommy's Avatar I <3 my kids
Join Date: Jul 2007
Location: Inland Northwest
Posts: 7,977

I can understand the frustrations. No one noticed my son having Autistic Disorder. The only person who noticed it was my mother. She told me when I asked for her professional opinion, since she is familiar with children with disabilities. We skipped the normal route of diagnosing, I didn't want to rely on the state to make the determination. We went to a child psychologist and at 26 months old, he was diagnosed with Autistic Disorder. Fast Forward 10 months, his Autistic traits are more noticeable. I can't imagine where we would be if we relyed on the state. I think my son would still be undiagnosed and with zero speech. With IBI using the Early Start Denver Model, he is just started to use 2-3 words now. He is FINALLY playing with children.. 6 months ago he had a huge bubble and wouldn't parallel play. Now he will sit next to a child with no problem and he is talking more.. Our Ped is AMAZING and don't plan on leaving him. I look back and wonder if we didn't take the extra steps we took, where would my son be right now.

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