10 year old with bizarre behaivor? please help.

[Angie0410]

Hello, I am brand new at this, I will first off start by saying I am a 30 year old mother of two, and I feel im pretty much single as I am married but without a supportive husband. We have a son who will be 11 in 2 months whos behaivor is very odd.  As his mother, I have always noticed him to be "different", and he has been through a whole gallery of test, and some "diagnoses" and then undiagnosing, then so on. I will list a little timeline of his delays sense birth...

he didnt roll over untill approx. 7 months of age, didnt sit up untill 8-9 months, didnt crawl untill 13 months old, and didnt walk untill 18 months old. He was delayed in speech as well, and since the age of 3, he has been recieving speech services, as well as gross motor skills help.  The test we had done prior to age 5, were of many, they did a CT scan of his head, and found him to have "Delayed Myelin" which they diagnosed him with Periventricular Leukamalacia, *PVL* which is very similar to CP! Well,  we met with a new neurogist who couldnt come to terms with this diagnoses because this primarly only happened in premature babies, when my son was over 9 pounds at birth, ordered another CT, and the "delayed myelin" was no longer there? ODD, so they withdrew the dx. Then this doctor said he believed my son to have Austim.

So the years have gone by and here he is is going into 5th grade, and lets just say Life has NOT been a piece of cake... its always a struggle, every single day with him, and its driving a wall into my marriage because of his father not wanting to "worry" or take part of this, and my husband constantly making me out to be the bad person because I seek answers. On top of his odd behaivor, he was diagnosed in 2005 with type 1 diabetes, so he is 100 percent insulin dependant, which is a living nightmare along tied with his "mental" conditon,  here are his symptons as followed, and if any of you have any ideas or suggestions, please help, I feel like I am on the verge of a break down because I dont know what else to do.

*he is extremly unorganized
*his speech and his tone are unclear and somewhat odd, and he also uses incorrect words often
*he has no sense of personal hygene *he can have food all over his face and not even realize it*, as well as put on his clothes backwards, with no knowledge of it.
*he seems overly sensitve to touch, a little to sound.
*he cant follow simple directions, they have to be repeated to him several times and sometimes even then, he doesnt even follow through.
*constantly seems distracted, ALWAYS.
*inappropriate actions towards his little sister who is 5 years younger (and I worry about the effects its having on her)
*he has trouble in school with academics, and gets overwelmed very easy.
socialy, he is at a loss, he cant remember other childrens names even though he has spent a entire year in school with them, and when they try to interact with him, he generally doesnt act age appropriate.
*he says the most off the wall statements that have absoutly no relevants to anything going on.
He has always been kind of laid back towards me as his mother, but the older he gets, he is rebelling of sorts, he seems angry and sad most of the time, and has even told me he doesnt like life :(..
*he is EXTREMLY immature and naive for a child of his age, he doesnt fit in with children in his age group, and he tends to flock to the children more his little sisters age.

There is much MUCH more to him, but this is some of the issues I could think of off the top of my head, does anyone have any idea what is going on, or what I should do? please help me as Im at a complete loss.. :(

[specialmom]

Hi there.  Well, hopefully you put yourself on the waiting list when you first wrote this post such a long time ago.  Clearly there were issues then that warrented further investigation.  I don't know where you live but in the states---  you can request help through your school for evaluations, help from your pediatrian to get you into someone to see sooner, and can take a private route . . .   if one person has a wait list, another may not.  We went the private route.  We were told the wait would be 6 months but it turned out to be less than a month.  So, get on the list to be seen by someone.  I found occupational therapists to be so very valuable for our son with sensory integration disorer.  They help with some life skills, behavioural aspects, and actually directly on the nervous system.  

I do wish you luck.  I'm so sorry that it has continued to be so difficult.  I think you are doing the right thing to follow up with a specialist so that the root cause of your concerns can be addressed.  I'd be very proactive from this point forward as you are your son's advocate.  I know that my son showed massive improvement with specialized help.  Lots of luck to you and your son dear.  peace

[Angie0410]

We are still fighting a losing battle, and the older he is, (just started 7th grade/Jr High) the harder things are. He cant keep track of anything, is extremly overwelmed with the most simple task, and still shows signs of motor skill issues as he presents a awkward gate, and motion. His speech is still off, and he has issues reconizing the consequences of his actions. (knowing the difference between right and wrong) I want so badly for him to gain Independence, and self pride, but it seems like we are going the opposite way :(. He is on a waiting list to see a local specialist but it may be months before he gets in. Still at a loss... :/

[Sandman2]

   Hi, please start a new post and give us some specifics.  All kids are different.  There are things that can point to Sensory, or AD/HD, etc.  Part of that is always the age and what is being done now or has been done, and how they are doing in school.  So if you have the time, maybe we can help!

[2blessed]

did you ever find any answers? i REALLY could have written your post so I am very interested.

[specialmom]

Hi.  I want you to google sensory integration disorder and read about it. You list several symptoms of sensory. I am not a novice to this developmental delay as my son also has sensory.  It involves how the brain processes things and the nervous system responds.  

If you could google this and let me know what you think, then I would have suggestions for you.  Look up motor planning difficulties, underresponsive in the tactile area, regulation, social issues, auditory processing.  

I am fairly certain that your son has sensory integration disorder.  Many autistic children do have sensory as secondary to the autism but a child can have sensory all on its own.  I've spent the past 2 to 3 years learning everything I possibly can about it to help my son.  He was diagnosed at 4 and is now 6 and doing really, really well.  We do occupational therapy once a week and many many things at home.  I'd be more than happy to give you some strategies you can try at home if you think sensory fits.  Based on your list-----------  I have no doubt myself. But that is only a snippet of information to go on.  Sensory is a newer diagnosis and is often missed.  Please google it and see what you think. Let me know.  good luck
(and I know exactly the pain of seeing something "off" in  your child and wanting so desperately to help them.  I feel for you.)

[Angie0410]

I agree with you completly, we have had him evaluated numerous times, and its always the run around. It seems like everywhere and anywhere we turn, its into a dead end, so this is why I have turned to the internet, seeking others who may know what is going on, or have experienced this with their child?  I think he is possibly a aspergers child, but I dont know, and its extremly frustrating.

[margypops]

I am not suprised he seems angry and sad , the list you have put here makes me feel sad for him....All I can add is this  child needs some help, I suggest to you that you request an evaluation, speak to the Doctor.