How can I help my son?

How can I help my son?

My son is 4 years old now and has been different since birth.

He never wanted to breast feed, and would pull away from me as if he was trying to get away. He has never slept and would wake like clockwork every hour and a half "screaming" for food 24 hours a day. He never snuggled or seemed to be at peace. I was so tired and felt like I could not be a good mom. All my other friends had these easy going sweet children,a nd my son wanted nothing to do w/ me.

Now as he has grown, we are great buddies but his reactions to things are very extreme. If he drops a few blocks or knocks down a tower he flips out, and if anyone accidentally knocks down a tower he has made he gets so angry and mad as if it were a personal thing.

He hates noises and has always held his hands over his ears. He melts down at automatic toilet flushes and hand dryers... to to the point where its embarassing. He will often tell me to turn the radio off that he needs some peace and quiet.

He only likes certain types of clothing.

He drew from age 2-3 nothing but maps and bridges and was completely fascinated with them. His pictures were amazing. Then one day he proclaimed that "I AM DONE DRAWING BRIDGES, NOW I CAN DRAW HOUSES". So he closed that book and opened a new one and began filling it with house pictures.

He has a very active imagination and likes to discuss what his life was like when he lived in Africa(we have never been to Africa).

He rarely plays with other children, and when they do play with him he bosses them around. He has kicked and hit a few kids that would not do what he wanted.

He has vision problems too and wears glasses, as well as patching for 2 hours a day. One eye is 20/50 the other is 20/40.

The teachers at his school have no idea what might be going on with him, and have recently recomended that we see a child psychologist. I can see, as nice as his teachers are, that they do not like him very much and I am fearful he will be labeled a PITA and not get the help he needs.

My sister heard of SPD through her school and thought I should look into it.

Do know who can help me?? We live on Long Island In New York.

I am really desperate for help at this point!

The SPD Help Line Answers...

Believe it or not, your story sounds extremely similar to MANY parents of children with SPD! You may certainly be on the right track by checking out the possibility of an SPD diagnosis.

Here's what I would recommend, based on what you have told me:

1. Read my Step By Step Guide For Parents who are new to SPD. This will bring you through the process you need to go through... from identifying whether it might be SPD, to getting an evaluation, treatment and support. Make sure you follow ALL the links listed in that article. Just follow all the steps I have mapped out for you and you will be well on your way to getting the help and resources you need.

2. Click here for a listing of New York SIPT Certified Occupational Therapists that could evaluate and treat your son for SPD (there are 13 pages of possible OT's!).

3. Make an appointment with a developmental pediatrician for a thorough evaluation that would rule out any other comorbid/co-occuring conditions or diagnoses. Call your local children's hospital for a recommendation of who to go to. Even better? If you can also find one that recognizes SPD it would be GREAT!! Ask them.

4. Get a copy of some (or all) of the following books:

The Out-of-Sync Child; Revised Edition

The Mislabeled Child

Building Bridges Through Sensory Integration

Raising A Sensory Smart Child

5. Talk to the Special Education Team or child Find Program through the school system. Tell them (instead of just the teachers) your concerns. Request an evaluation by the team... it would include OT, speech, PT, developmental specialists, psychologist, etc. Get as many professional eyes on him as possible to assess, address, rule out, and/or begin treating anything that will be needed.

Let us know any further questions or updates. An OT evaluation (separate from the school one) will certainly be a great place to start regarding the possible SPD!

Good luck. Hope this helps.

Take good care.
Michele Mitchell

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How can I help my son?

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Apr 04, 2008
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Asperger's Syndrome??
by: Kristy in NJ

Hi! I know the whole meltdown thing as I'm sure everyone else does! It can certainly be draining! If it's any consulation to you, my now 5 year-old son has also completely crumbled at the sound of the automatic-flush toilets. About a year and a half ago, I literally had to drag him out of bathroom in Newark Airport because he was so hysterical. Talk about making a scene!! :) Thankfully, he hasn't done this in a long time, but he still covers his ears until he sees it won't "hurt" him. You can still sense the uneasiness. I couldn't even imagine living with that much fear. Baby steps....

In terms of your little guy's behavior, it definitely sounds like he's got SPD. But honestly, the very next thought in my head was the possibility of an Asperger's Sundrome Diagnosis, which is part of the Autistic Spectrum. Google it; you'll find a lot of useful informaiton. His "fascination" with bridges and maps then horses, the bossing around (has to be his way) and rigidity, in addition to the sensory issues are all characteristic of AS. I'm not only a mom of a child with SPD, ADHD, Anxiety Disorder, but I taught special ed. prior to having my own children...go figure! ;)

I'd **definitely** find a good neuro-developmental pediatrician for a full diagnostic evaluation. I'd also formally request a full Child Study Team evaluation from your school district to determine what type of services educationally and therapeutically he's eligible for while at school. At the age of 3, children are eligible for services through their local school district.

My son is currently in the preschool disabled classroom; he's been there since he turned 3. I'd make the request to the CST ASAP to ensure, at the very least, services will be in place via an IEP (Individualized Education Plan) for when he starts kindergarten in September or if he still has another year of preschool.

And, yes, there are times when it is beyond frustrating and the only thing you can do is sit down and cry. I did this just three days ago! There is no greater pain than to see your child struggle and feel as if you can't help them. Just know that you can and you do help him and always, always be your child's most fierce advocate because as his mother, you DO know him better than anybody else! Lots of luck!! :)

**PS--my best friend's just 4 year-old daughter was diagnosed with Asperger's Syndrome this past year. From your first to your last paragraph, this made me immediately say to myself, "Wow, this all sounds like K*****." She lives in NY state, close to the NJ, border and went to a fabulous developmental pediatrician in Manhattan... I think NYU. Anyway, feel free to contact me if you'd like to get in touch with her. I'm sure she'd be happy to "chat" with you; it's all about support! My email address is kadivito@verizon.net Please, don't hesitate to contact me.

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Apr 04, 2008
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Submitted by: Kristy in NJ

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Comment
Hi! I know the whole meltdown thing as I'm sure everyone else does! It can certainly be draining! If it's any consulation to you, my now 5 year-old son has also completely crumbled at the sound of the automatic-flush toilets. About a year and a half ago, I literally had to drag him out of bathroom in Newark Airport because he was so hysterical. Talk about making a scene!! :) Thankfully, he hasn't done this in a long time, but he still covers his ears until he sees it won't "hurt" him. You can still sense the uneasiness. I couldn't even imagine living with that much fear. Baby steps.... In terms of your little guy's behavior, it definitely sounds like he's got SPD. But honestly, the very next thought in my head was the possibility of an Asperger's Sundrome Diagnosis, which is part of the Autistic Spectrum. Google it; you'll find a lot of useful informaiton. His "fascination" with bridges and maps then horses, the bossing around (has to be his way) and rigidity, in addition to the sensory issues are all characteristic of AS. I'm not only a mom of a child with SPD, ADHD, Anxiety Disorder, but I taught special ed. prior to having my own children...go figure! ;) I'd **definitely** find a good neuro-developmental pediatrician for a full diagnostic evaluation. I'd also formally request a full Child Study Team evaluation from your school district to determine what type of services educationally and therapeutically he's eligible for while at school. At the age of 3, children are eligible for services through their local school district. My son is currently in the preschool disabled classroom; he's been there since he turned 3. I'd make the request to the CST ASAP to ensure, at the very least, services will be in place via an IEP (Individualized Education Plan) for when he starts kindergarten in September or if he still has another year of preschool. And, yes, there are times when it is beyond frustrating and the only thing you can do is sit down and cry. I did this just three days ago! There is no greater pain than to see your child struggle and feel as if you can't help them. Just know that you can and you do help him and always, always be your child's most fierce advocate because as his mother, you DO know him better than anybody else! Lots of luck!! :) **PS--my best friend's just 4 year-old daughter was diagnosed with Asperger's Syndrome this past year. From your first to your last paragraph, this made me immediately say to myself, "Wow, this all sounds like K*****." She lives in NY state, close to the NJ, border and went to a fabulous developmental pediatrician in Manhattan... I think NYU. Anyway, feel free to contact me if you'd like to get in touch with her. I'm sure she'd be happy to "chat" with you; it's all about support! My email address is kadivito@verizon.net Please, don't hesitate to contact me.

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Feb 07, 2008
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Hi
by: Anonymous

My daughter has the same reactions to the toilets, dryers etc. Auditory Defensiveness is when the brain acts as if it has never heard a noise before even if it's a common sound. Our children are told by their brain to go into fight or flight over and over. They are truly terrified.

My daughter cried for the first 3 weeks of 3rd grade and we didn't understand why until a meeting with her teacher revealed that she sat in front of the air conditioning/heating unit! It is the same low hum that triggers her sensitivity! The day we moved her seat she stopped crying!

There are silicone putty ear plugs at the drugstore that you press on the outside of the ear, really easy to use, and clear so nobody notices. Those may help.

Occupational therapy has absolutely helped her; she can now tolerate the toilet sounds as well as the vacuum cleaner! But as her parents we've learned when there seems to be a problem we ask ourselves what noises are around her and we usually find the root.

Feb 06, 2008
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Been There!
by: Heather , CA

I can absolutely relate to your situation! My daughter has different sensory issues mainly Auditory deffensiveness but I totally get the tantrum thing. At 4 my daughter had me in tears in the kitchen, luckily my husband came home and took her kicking and screaming up to her room where she continued to punch and kick her door!
She is my second child and I knew she didn't pick up on cues like my son(I could stop his behavior with a look) she could not read when I had had enough and kept pushing until i was at my wits-end.

What I learned about most kids with SPD feel out of control most of their day and unload on Mom and Dad when they get home because they feel "safe". Your son knows you love him and he can trust you to love him even when he's a stinker. They are chronically frustrated because their bodies and brains don't always cooperate, and all the other kids can do it but they can't. So they become little control freaks with friends. Can you imagine if all your girlfriends asked you out to lunch but only seemed to want to go the places you couldn't stand. It's the same for these kids when all the kids want to do things that kids like ours can't handle.

My advice Mom to Mom would be to remember you're in charge and not let the kids suck you into a battle. I know it sounds like a no brainer but honestly it feels like kids are born knowing how to push our buttons! You set the tone in your household on how to treat others lead by example. My husband was really good about catching my daughter as she stomped away and asking her to come back and do it again the right way.

Always remember that kids no matter what their behavior looks like only want us to be proud of them. Because I always felt like I was yelling at my daughter I tried to change my strategy and whenever she was not having a tantrum I complimented her on her wonderful manners and would even call the grandparents and brag about my wonderful girl. And lastly my daughter is also very artistic and was content to spend hours drawing. I thought she was just like her Mommy so I would let her spend most of her time sitting drawing. What I wish I knew is that because of her auditory issues she feels off-balance (both auditory and balance are in the same area of the brain) what she was actually doing was hurting her development. She was working with her strength (art) and not challeging her body. You need to move to build a happy healthy brain and I wish I had known to take her to see an O.T. it might have made a difference (she has mild learning dissabilities). She did see an O.T. at age 8 through Kaiser and I was floored at the results! Her self esteem improved and so did her behavior. It seems absurd that such simple movements could be helpful but it's true!

Now what helps today might not work tomorrow and we are always a work in progress. Don't give up you'll see progress as he matures he's just going to give you all your grey hair!!

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Feb 06, 2008
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Submitted by: Heather , CA

Title

Comment
I can absolutely relate to your situation! My daughter has different sensory issues mainly Auditory deffensiveness but I totally get the tantrum thing. At 4 my daughter had me in tears in the kitchen, luckily my husband came home and took her kicking and screaming up to her room where she continued to punch and kick her door! She is my second child and I knew she didn't pick up on cues like my son(I could stop his behavior with a look) she could not read when I had had enough and kept pushing until i was at my wits-end. What I learned about most kids with SPD feel out of control most of their day and unload on Mom and Dad when they get home because they feel "safe". Your son knows you love him and he can trust you to love him even when he's a stinker. They are chronically frustrated because their bodies and brains don't always cooperate, and all the other kids can do it but they can't. So they become little control freaks with friends. Can you imagine if all your girlfriends asked you out to lunch but only seemed to want to go the places you couldn't stand. It's the same for these kids when all the kids want to do things that kids like ours can't handle. My advice Mom to Mom would be to remember you're in charge and not let the kids suck you into a battle. I know it sounds like a no brainer but honestly it feels like kids are born knowing how to push our buttons! You set the tone in your household on how to treat others lead by example. My husband was really good about catching my daughter as she stomped away and asking her to come back and do it again the right way. Always remember that kids no matter what their behavior looks like only want us to be proud of them. Because I always felt like I was yelling at my daughter I tried to change my strategy and whenever she was not having a tantrum I complimented her on her wonderful manners and would even call the grandparents and brag about my wonderful girl. And lastly my daughter is also very artistic and was content to spend hours drawing. I thought she was just like her Mommy so I would let her spend most of her time sitting drawing. What I wish I knew is that because of her auditory issues she feels off-balance (both auditory and balance are in the same area of the brain) what she was actually doing was hurting her development. She was working with her strength (art) and not challeging her body. You need to move to build a happy healthy brain and I wish I had known to take her to see an O.T. it might have made a difference (she has mild learning dissabilities). She did see an O.T. at age 8 through Kaiser and I was floored at the results! Her self esteem improved and so did her behavior. It seems absurd that such simple movements could be helpful but it's true! Now what helps today might not work tomorrow and we are always a work in progress. Don't give up you'll see progress as he matures he's just going to give you all your grey hair!!

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Feb 05, 2008
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ASD
by: Anonymous

I am sorry to hear about all the difficulties you are experiencing as a mother. My concern is that your son may have sensory processing challenges, but that you may want to look into other diagnosis. One that you may want to consider looking at is, Asperger's Syndrome. People with this disorder are often very bright, tend to become pre-occupied with specific things (such as bridges and houses), and need to learn more appropriate ways to engage in social situations. I hope you find the answers you seek. A school psychologist is a qualified examiner and can be accessed through Child Find in your public school district. I would start there. If your son does have Asperger's, there are many options and resources for him.

Good Luck,
A school-based occupational therapist

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