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I need an outside opinion on my son *long*

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I posted in a new group intentionally becaue I need a fresh point of view.  

My son will be 6 in June.  From the day he was born he was "different."  He has never liked being held or cuddled.  No swaddling, the bassinet was too confining and he wouldn't sleep in it.  Baby wearing was like torture to him.  He liked his space and he loved to be able to see everything going on around him.

He hit his milestones on time or early.  He was talking sentances by 1 year old and he's never stopped.  By 18 months he was in the why phase and that has never stopped either.  He always questions everything.

He has always been very... particular.  Even at a young age he would only use things the way they are made to be used.  So like if he got a set of blocks he would only build the things that were pictured on the packaging, nothing else.  If he got a toy in a box you play with the toy and throw out the box because boxes are to hold things not to play with.  Toys for his age group have always bored him.  We had to buy toys for older kids.  He never put things in his mouth as a baby or toddler.  He wouldn't even try a new food until we assured him it was indeed food.  By the age of 10 months he was eating properly with a fork.  He had an amazing attention span as an infant/toddler.  At the age of 6 months he would play with the same toy for 2 hours.  You could not tear him away from it.

At a very young age he could not handle the sound of Elmo's voice.  It would send him into a screaming, crying fit until we removed him from where he heard it.  I'm talking 2-3 months old here.  A few months ago we finally got a diagnosis of sensory procesing disorder and we are working on helping him cope with his sensitivities to light, sound, and touch as well as understand how his body is feeling.  He doesn't always know.  I have to limit his food because he doesn't understand when he is full and will eat until he is sick.  I have to monitor him closely if it is hot outside because he will become physically ill while insisting it's not hot and he doesn't need a drink of water.

And boy could he throw a tantrum!  Redirection was not an option with him.  I could leave the house for 6 hours and when we came home he would go right back to what he wasn't supposed to do.  By the age of 13 months he would sit in time out on the bottom step for a 1 minute time out.  Still he would go right back to what he wasn't supposed to be doing.  I did a lot of babyproofing and a ton of discipline even at this young age. He could tell me exactly what he was in time out for but he would not stop doing it.  As he got older he would sit nicely in his time outs but come out furious.  They actually made his behavior worse!  After a month of spending pretty much all day in time out (because he would come out screaming and hitting) I switched to disciplining him by sending him to his room instead.  He would come out when he was ready to listen and it ended the anger after discipline.  He also stopped behaviors after we warned him he would be sent to his room if he did not stop.  But the tantrums turned to meltdowns.  And the meltdowns have turned to full out rage.

So now he is 5 1/2.  We are still very consistent on discipline.  He has input as far as the rules of our home.  We have talked about discipline together and he usually has some pretty good ideas so we do them.  I'm talking he threw his favorite new ball at his sister's head so his solution was he lost his ball for a week.  He wasn't happy about it but we both thought it was a fair punishment.  If it's not fair I come up with a punishment.  We are firm believers in natural consequence and consistency.  We do not believe in spanking although I do admit I have tried it when I was at a complete loss of what else to do.  It just made things worse (this was before I knew how bad spanking was for kids with spd).  

We have recently started a chart where the kids have ways they can earn "mommy money" and then house rules.  They decided that for breaking the house rules they should have to go to "jail" (ie time out on the steps) and pay one piece of money to get out.  Money is pretty easy to earn.  My almost 3 year old has a bunch of it.  My 5 year old doesn't have any at all!  They can use their money for rewards like a trip to the park, watching a movie, computer time, playing a game, staying up late, etc. and he really wants to save it up but he just can't seem to stay out of trouble!

So what is he doing exactly?  Well, he cannot get started doing anything recently!  Getting him dressed involves a 2 hour battle with a couple of time outs.  His schoolwork (homeschooled) is taking all day.  He randomly screams and shrieks for no reason at all.  He gets distracted by everything!  If I put a dish away and the handle on it is turned the wrong direction he might focus on that and not be able to do anything else until it is fixed.  The floor can be a mess but whatever is picked up has to be put exactly right.  Of course I have no clue which direction the handle is usually facing so it's quite the ordeal.  Getting him to clean his room is a nightmare because his cars can be all over the floor and that's fine but if he's going to clean them up they must be perfectly lined up in the tub in order and matching.

His day must follow a certain order as well.  Every day he...

gets up

gets dressed

takes out the compost

takes care of his rabbit

washes his hands

eats breakfast

brushes his teeth

then schoolwork: math, Bible study, journal, history


more schoolwork: circle, spelling, reading, science, cursive

then we play together usually outside unless it is raining (he can't handle the water on his face) or really windy (in which case he usually hides because he's terrified of tornadoes)

we head up to my room and work on the scrapbook I'm making.  

I make dinner while he showers and gets his jammies on

eat dinner

wash up, brush teeth

read books

go to bed

Day in and day out it must be in that order.  Because that's the way things are.  You don't vary it.  You don't say "we aren't doing this today."  His school work only takes about 2 1/2 hours if he has a good day and just does it but when he's dragging it might take all day.  Once again I can't change a thing with it.

If I take him to a store and there are tiles on the floor he must walk the row of tiles.  He won't go off of that row and insists others do the same.  He gets mad if he runs into a shelf or a wall.  I can't count how many times I've carried him screaming and kicking out of a store because of a sudden outburst.

So his rages... they are bad.  Last time he had one because I told him it was time to get ready for dinner and he wasn't finished with his schoolwork yet.  He couldn't handle the varying of the schedule.  He tried to push my daughter off of my 3' high bed.  He tried to push me down the stairs.  I ended up putting him in his room and holding the door closed while he screamed "I hate you" and threw things around until he finally calmed down.  Yes, he was disciplined.  He cleaned up his room, ate a snack in his room, and went directly to bed early.  The thing is he was clueless why this was happening and why his room was a mess.  He insisted he didn't do it.  He has zero recollection of these rages.

I have never gotten a spontaneous hug, kiss, or "I love you" from him.  It just does not occur to him.  He will reciprocate but he will not initiate.

He is an amazing, smart little boy.  His charter homeschool tested him at a 3rd grade level so he is highly gifted.  He has his days maybe once a month or so where he is caring and on task and it's so amazing.  We talk about this a lot.  He breaks down in tears saying he tries but he just can't help it.  For all of his quirks he is not one to lie.  

I feel lost.  I feel like this is more than I can handle.  I've taken him to a developmental pediatrician who evaluated him for autism and told me he does not have it.  They say he has "autism like behaviors" and sensory processing disorder.  They referred him to a neurologist who basically blew us off and referred us to behavioral health.  They said he has impulse control disorder and anxiety disorder and they would do counseling for him but our insurance won't cover anybody privately and they don't have anybody experienced with children.  The developmental pediatrician doesn't feel that's the right diagnosis.  He feels he has "quirks" because his billiruben was so high after birth it caused neurological damage.  So what do I do about that?  Get myself counseling and hang in there because he's going to be a tough kid to raise!  Thanks for all of the help there!  The school psychologist says to expect an autism diagnosis as he gets older.  He wasn't willing to evaluate unless I wanted to because he can't make a medical diagnosis and the developmental pediatrician we saw has a great reputation especially for autistic children in this area.

I'm debating on taking him to a different developmental pediatrician.  It's not diet.  We follow an anti candida diet so no preservatives/artificial anything, no sugar, no gluten, etc.

Would you take him to a new doctor?  Or do you have any clue what to do with this kid?

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 Jan. 17, 2013 at 1:38 PM
Replies (41-46):
by on Jan. 19, 2013 at 1:48 PM

Quoting JasonsMom2007:

He doesn't qualify for an IEP here because he is so far above grade level.  He would be left in the mainstream classroom and not qualify for any services at all.  He would be acadmically bored on top of all of the other stuff he has going on.  He can't handle the artificial lighting in classroom settings either.  I have talked to a lot of people at his school, other parents, and educators at public school (including those who work in special ed) and they all agree it's not a good fit for him.

Even if he DID get an IEP I know several parents who have kids with autism or other special needs and they say our special ed is a joke.  It's more like babysitting than special ed.  They get very few therapies and no gifted program at all.

I'm really leaning towards getting him reevaluated though.

Quoting goddess99:

Some of what you said, I could have written.

My 3 thoughts are Sensory issues which you already know about. Autism, and ocd. I would have him reevaluated, therapy for him should help, I might try to find some way of making that happen. And have you thought about putting him in a regular school? He would get and have all sorts of help there. It might help alot to have him around a group of kids all day, every day. Plus he would have an IEP and he would have probably an Aide with him all day, behavioral therapy and occupation therapy probably a couple times a week just at school.

My son is above grade average with all his school work. He qualifies for an iep.  He  has an anxiety disorder and ADHD and a lot of emotional problems. They have him in classes that have a lot of focus on helping the kids with different needs. The iep helps so much. It allows me to work with all the teachers and councelors in the school. You may want to look into himgoing to school and they can test him to see what grade he should be in. 

by on Jan. 19, 2013 at 4:53 PM

I don't claim to have all the psych expertise here, but from the college psych classes (over 24 hours) I would say the doctor and school counselor were right that you could expect a diagnosis somewhere on the Autism spectrum.

The relative symptoms have been there since birth for him, so regulating the diet may help, but it isn't the cause. 

There is a huge autism spectrum, and your son is obviously very highly functioning, just with certain excentricities. 

I have an acquaintance here in town whose highly-functioning autistic high schooler was too high functioning for special ed programs, but couldn't work in a classroom environment. He is homeschooling now using the K12 homeschool program done in conjunction with the public schools. She says it works well for her son because it's on the computer and is very structured on what to do at what time. She also sends her other son to a regular day school so that her autistic son can have a quiet house for most of the day.

If I were in your shoes, I would just start doing all the research I could on my own to know if there's any sensory development therapies that might help with the overload. And also work on creating that safe, quiet environment for him more (really hard with another sibling around I know.)

by on Jan. 19, 2013 at 5:23 PM

First sorry your not getting any help, there is obviously an issue and If your not getting answer then keep seeking another opinion. Join an autism support group and ask advice of other moms who have similar issues. its possible that he has more then one diagnoses such as, OCD, and ADD and be on the autism spectrum.. ect. his behaviors also sound similar to Prader-Willi Syndrome. Just do your own research and find help where ever you can. call your local children's hospital to seek help or find new resources.

good luck

by on Jan. 19, 2013 at 11:42 PM

I would definately take him to another doctor. I don't know where you live but where I live we have a group that is specifically for Autism and ASD. My nephew went to them to see what was going on with him when he was 7 yrs old. The diagnosing process took almost a year of evaluations. He didn't fit into any of the DSM IV (at that time it's now a DSM V) diagnosing of Autisim or an ASD. So his official DX is PDD-NOS with Asperger tendencies, social phobia, and ODD. Once we got the DX it made it a lot easier for me with handling daily life. I learned how to let him know about changes to his schedule. I learned that I had to include EVERYTHING in his schedule. (I left out lunch from his schedule one day and he didn't want to stop to eat. I had to rewritte his schedule to include lunch so he'd eat)

by on Jan. 20, 2013 at 3:37 AM

 How about a child psychiatrist?  That is who will be the expert in the area of the brain and behavior.  If they feel a neurologist can help they will refer you to one.  Personally, he sounds like a mixture of your sensory processing disorder and a few other diagnoses like autism OCD, ODD possibly.   

All a therapist is going to do is maybe talk to him about his behaviors and try to convince him to try things to curb the behaviors and if he is not responsive it isn't going to do much for him.  Maybe look for some social behavior groups through your local mental health center. Occupational therapy and physical therapy might help as well.  OT should give you help and ideas for at home with the sensory issues.

Chewing is a sensory thing and sounds like how he is coping with some anxiety causing situations. 

Also keep in mind that the true reason for medicating is so that their minds can relax so they can learn to cope and deal with their behaviors without all the buzz that is going on in the background for them.  He may not be able to stop and really learn without them.  I am not saying you should medicate but keep an open mind.

Good luck. 




by on Jan. 20, 2013 at 11:55 AM

I am a former certified preschool and kindergarten teacher.  Immediately i thought that your child may be on the autism spectrum.  I would find a doctor who is willing to work with you and find the help you and your child need.  

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