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I need an outside opinion on my son *long*

Posted by on Jan. 17, 2013 at 1:38 PM
  • 46 Replies
1 mom liked this

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

lunch

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
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Replies (1-10):
JasonsMom2007
by Member on Jan. 17, 2013 at 1:40 PM

Oh and now he chews on EVERYTHING especially when he's overwhelmed.

2boysandhubby
by on Jan. 17, 2013 at 1:55 PM
1 mom liked this
Stay strong, YOU know whats best. You can get several opinions but please dont jump on band wagon of shoving pills down his throat at such a young age. So what if he is autistic? If you follow a strict diet DO NOT administer pills. Stay with diet. Stick with your regime, you get some outside support- moms groups or hit the gym. Maybe even try and sit in with him at a local pre school for kid interaction and find one he likes- teachers are key. Do your research before docs give you "remedies" I think in nature we think they are supreme, but they just have a higher degree. I would def. Try a naturopath doc. Good luck!
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goddess99
by Michelle on Jan. 17, 2013 at 2:01 PM
1 mom liked this

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.

JasonsMom2007
by Member on Jan. 17, 2013 at 2:02 PM

I do not want to medicate him.  I want help in learning coping techniques, discipline strategies that will work for him, and the right way to handle this stuff.  I live in a rural area.  There aren't any mom's groups.  There isn't a gym for 40 miles.  He is in kindergarten doing much higher work so I'm not sure why I would take him to a local preschool?  We only have 2 anyways with mile long waiting lists.  Besides when his speech and hearing was evaluated by head start at the age of 4 they told me it would be pointless to put him in preschool because he's so far ahead.  He has interaction with other kids.  He takes workshops at his charter school, he is in AWANA, Sunday School, and 4-H.  We go bike riding with other homeschoolers in the church parking lot.

We have a holistic doctor for him.  He is the one who started this diet.  It has helped a little bit but a lot of other behaviors have came out recently as well.


Quoting 2boysandhubby:

Stay strong, YOU know whats best. You can get several opinions but please dont jump on band wagon of shoving pills down his throat at such a young age. So what if he is autistic? If you follow a strict diet DO NOT administer pills. Stay with diet. Stick with your regime, you get some outside support- moms groups or hit the gym. Maybe even try and sit in with him at a local pre school for kid interaction and find one he likes- teachers are key. Do your research before docs give you "remedies" I think in nature we think they are supreme, but they just have a higher degree. I would def. Try a naturopath doc. Good luck!




Being a full-time mother is one of the highest salaried jobs in my field, since the payment is pure love.  ~Mildred B. Vermont
goddess99
by Michelle on Jan. 17, 2013 at 2:07 PM

Oh and there's so many things you could do at home. Swinging helps, jumping on a safety trampoline helps, pushing on a wall, compression of his joints, brushing - oh we did brushing for a long time, helped. Calming things like "the owl" which is similar to breathing exercises, there are so many things, I can't even remember half of what we've done. Weights, like a heavyish backpack.

jett286
by Member on Jan. 17, 2013 at 2:07 PM

I would try to find another Dr.  Sometimes it takes a few to get a diagnosis right.  Doesn't mean the other docs are bad, but you have to get help.  If he doesn't remember his rages, what is that about.  I get the follwoing a routine exactly that is (from what I know) a norm for some kids on the autism spectrum, but sensory stuff too....wow.  Hang in there.

JasonsMom2007
by Member on Jan. 17, 2013 at 2:07 PM

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.




Being a full-time mother is one of the highest salaried jobs in my field, since the payment is pure love.  ~Mildred B. Vermont
JasonsMom2007
by Member on Jan. 17, 2013 at 2:08 PM

Yeah I'm leaning that way.  It's so strange he stands there after staring at his room in shock asking who did that and saying that they shouldn't be in his room anymore.  If he picks something up that he broke he starts crying and asking why they would treat his things that way.  I mean, it's not him trying to get out of cleaning up he is truly bewildered!

Thanks :)


Quoting jett286:

I would try to find another Dr.  Sometimes it takes a few to get a diagnosis right.  Doesn't mean the other docs are bad, but you have to get help.  If he doesn't remember his rages, what is that about.  I get the follwoing a routine exactly that is (from what I know) a norm for some kids on the autism spectrum, but sensory stuff too....wow.  Hang in there.




Being a full-time mother is one of the highest salaried jobs in my field, since the payment is pure love.  ~Mildred B. Vermont
goddess99
by Michelle on Jan. 17, 2013 at 2:14 PM
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I know nothing about special ed. My dd was never in that. Here that's for kids who can't keep up in class. My dd is an honor student so we never had that.

JasonsMom2007
by Member on Jan. 17, 2013 at 2:19 PM

Yeah here's it's really sad but they have to be academically behind to even get an IEP.  His school was trying to get him one but he's so advanced that they couldn't do it.  Thankfully they want to support us and do what they can to help anyways but they do not have to do it nor does he have an IEP.


Quoting goddess99:

I know nothing about special ed. My dd was never in that. Here that's for kids who can't keep up in class. My dd is an honor student so we never had that.




Being a full-time mother is one of the highest salaried jobs in my field, since the payment is pure love.  ~Mildred B. Vermont
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