Re: Help me understand my five year old - how many labels does he have to have?

[Guest guest]

It sounds to me that he is somewhere on the autism spectrum and that all of

these things you describe are due to this.  It is not unusual for a young child

with autism to have any of the issues you describe.  He may also have trich (My

daughter has it and has had it since a baby) or it may be part of a sensory

thing.  To me it sounds like your best bet is the school system.  Whether or

not you homeschool your child, he is entitled to all the related services that

autistic children may receive, including speech services, occupational therapy,

behavioral therapy, etc.  Have you contacted the major autism group near you to

learn how to best advocate for your child through your school district?  That

could be a big help.  While some school districts may try to hold back on

providing these related services as much as they can due to budget constraints,

if you know how to push hard enough you can get it.  It may be worth it to

bring an educational advocate with you to the meeting.

Help me understand my five year old - how many labels

does he have to have?

Hello, this is my first post here.

So much info here, its hard to fathom. Wanted some advice from all

you knowledgeable parents if you would

be kind enough to help me.

My boy has Autistic Spectrum Disorder, and is five years old. He has

been pulling at his hair since he was baby (Trich) on and off. and

now has most of the hair off his crown missing. He did this before,

pulled out the front of his hair completely when he was 2, and now it

has returned.

I dont know if this is a sensory thing or an OCD thing, how does one

tell? He has pulled at my hair since he was a young baby, used to

twist his fingers in my hair so bad, it took ages to untangle.

He also has suspected ADHD, as he has NO attention span whatsoever.

He is very bright (is learning to read on his own) knows how to

manipulate very well but flies into rages if he cant get what he

wants. He has major sensory issues when we go out, and a trip to the

park is a nightmare on wheels, he just runs the whole time and will

escape at first opportunity. Trying to teach him something is very

fleeting cause he cant sit for more than a few minutes.

He has never been formally labelled with anything except his ASD and

i have found to date, doctors have been pretty useless in helping me

with that, much less anything else.

Regardless of labels, we do have the manifestations in his behaviour

of a lot of things, but going to a doctor about it will mean

psychologists and probably the offer of drugs. I dont want either, as

my boy i

s only starting to talk, and we use biomedical interventions

for his other stuff.

My basic question is, are you on your own with OCD/ODD and the rest

with or without a formal label? Have you received outside help with

your kids or did you have to " reinvent the wheel " for each of your

children in helping them? So far this has been the case for me, with

my boy's autism and I suspect will be the same for the rest.

by the way, my boy is home educated. The schools were damaging to him

because he was sensory overloaded.

Finally, do you believe that ODD is real? Until now, i thought it was

B.S., but now i am thinking otherwise - thought i can see its very

complicated and tied in with everything else. Nothing seems to stand

alone, its all tied up with the rest.

thank you people

[Guest guest]

Hi, some quick thoughts here. I read the other replies you have and

agree with them. One of my sons (reason I first joined this group)

has OCD, dysgraphia and HFA/Aspergers diagnoses. The OCD began in

6th grade, also the dysgraphia dx (diagnosis) came then. I got the

HFA/Aspie dx for him in 8th grade though always felt from young age

he had traits.

You mentioned you're using biomedical interventions. Are you trying

diets or supplements, both...? Is he getting any occupational

therapy for the sensory stuff?

With the trich, was wondering have you looked at inositol powder (in

B vitamin family). It's helped with trich, skin-picking and also,

for some, OCD. For OCD, it's sort of 50/50, works for some, not

others. (Sort of like having to try more than one prescribed med to

find one that works. We used it for OCD a few years ago, worked

fine; then sort of pooped out I guess; tried it again much later and

didn't help a bit.) Anyway, you might want to try it and see if it

helps with trich. I'm sure stress/anxiety can increase the

picking/pulling.

A lot of kids, seems to me, have ODD. I do medical billing for some

people and see that one often. (Personally, I think lots of teens

develop it, LOL - said as a mom of 3 boys) I do wonder, though, if

the ODD behaviors are due to other things -- like the sensory stuff

for some people or reactions/behavior that are caused by OCD or

autism or ADHD...the behaviors/outbursts may be due to reactions

caused by OCD, etc., and then ODD gets added on to dx list. Though I

do think ODD is real for some who fit criteria. A way to get them

therapy too, to get the diagnosis.

Regarding autism, each person is " individual " as to how they are

affected, their needs, etc. Sort of like OCD too, really, many types

of compulsions, thoughts, etc., but still OCD. Your son sounds like

he needs a really structured environment, routines, etc., prompts to

stay on tasks, finish, etc. My son didn't " strictly " need that as

much but was more comfortable with routines when it came to some

things (like classroom). And my son () was also okay with

unexpected changes in routines, whereas could cause an outburst for

others. ---- Can cause outbursts for those with OCD too if OCD is

messed with. Can really be a tangle trying to sort causes/reasons

out with multiple diagnoses, etc.

I think you should just work on each issue/need. Helpful to know

what is causing outbursts, to know from what perspective to approach

it. But to get outside services, yes, need the diagnoses. As

Jordana said, you can still get school services like OT or speech,

etc. (And, as she said, may have to push them for it; some schools

are great, others not.) Anyone in your area work with autism, have

you checked your state's Autism Society? Our state has

local/regional parent advocates that can help guide others. (Be nice

to have that for OCD too sometimes!)

Again, quick thoughts!

>

> Hello, this is my first post here.

>

> So much info here, its hard to fathom. Wanted some advice from all

> you knowledgeable parents if you would be kind enough to help me.

>

> My boy has Autistic Spectrum Disorder, and is five years old. He

has

> been pulling at his hair since he was baby (Trich) on and off. and

> now has most of the hair off his crown missing. He did this before,

[Guest guest]

Hi there,

Ok, you sound somewhat discouraged about finding help. Not sure what

resources you do have where you are living for the autism piece, but

wondered as others have mentioned, about any organizations within the

country that might help you to know how to locate and advocate for

these services.

I am in Canada where we can wait for months to see a doctor for

diagnosis, and some kind of treatment for OCD (not necessarily the

kind needed), or can go on our own and pay privately. We started out

private, out of pocket for diagnosis and CBT treatment, then things

got worse and needed to go the medication route, so had to go through

hospital system to access psychiatrist and meds, and ended up getting

treatment of a kind via this route. Long story short, went out

privately again, realizing the specific treatment for OCD was not

going to be accessed where we were, unfortunately by that point our

son was done with doctors...

So, in summary, yes, sometimes you have to enter the " system " to get

some labels/diagnosis to at least know what type of treatment is

needed. Also, going within the given systems you can learn what is

available, what type of treatments exist even if you can't access,

and perhaps about support groups, and groups that are out there

advocating for services for these kids. This was my experience. The

more I looked the more I found others in the same boat, and learned,

sadly how much was lacking, but at least could figure out how to work

within what was given.

I also started a support group for parents with kids with OCD. I did

this because I needed it and it didn't exist. The combined

experiences and learning of the group, as well as just being with

others who get it, goes a long way to making this road easier to

navigate. Much like this group!!!

You might check into general parent support groups for kids with

neurobiological disorders. Also, online groups for autism spectrum.

We do have members with children who have aspergers, tourettes, tics,

depression, comorbid with the OCD in varying combos.

It seems that it is common that many disorders/conditions exist

comorbidly. While no one wants a bunch of labels attached to their

kid, in order to have clarity on how to manage what is going on

sometimes it is helpful to classify things. The ODD, I have mixed

feelings on, as mentions, to the extent that it might help you

access services or accomodations it might be useful, but there

doesn't seem to be an actual " treatment " for this, just more a label

describing behavior. So, I guess it just depends if the label helps

take you somewhere useful.

Wish I had more answers for you. I do know how depressing and

frustrating it can be to not be able to find what you need for your

child, or to find it just doesn't exist, or you can't access it if it

does. If you can find others in the same or similar situation it

might help you find a trail that leads somewhere useful.

Good luck on this!

Warmly,

Barb

>

> Hello, this is my first post here.

>

> So much info here, its hard to fathom. Wanted some advice from all

> you knowledgeable parents if you would be kind enough to help me.

>

> My boy has Autistic Spectrum Disorder, and is five years old. He

has

> been pulling at his hair since he was baby (Trich) on and off. and

> now has most of the hair off his crown missing. He did this before,

> pulled out the front of his hair completely when he was 2, and now

it

> has returned.

>

> I dont know if this is a sensory thing or an OCD thing, how does

one

> tell? He has pulled at my hair since he was a young baby, used to

> twist his fingers in my hair so bad, it took ages to untangle.

>

> He also has suspected ADHD, as he has NO attention span whatsoever.

> He is very bright (is learning to read on his own) knows how to

> manipulate very well but flies into rages if he cant get what he

> wants. He has major sensory issues when we go out, and a trip to

the

> park is a nightmare on wheels, he just runs the whole time and will

> escape at first opportunity. Trying to teach him something is very

> fleeting cause he cant sit for more than a few minutes.

>

> He has never been formally labelled with anything except his ASD

and

> i have found to date, doctors have been pretty useless in helping

me

> with that, much less anything else.

>

> Regardless of labels, we do have the manifestations in his

behaviour

> of a lot of things, but going to a doctor about it will mean

> psychologists and probably the offer of drugs. I dont want either,

as

> my boy is only starting to talk, and we use biomedical

interventions

> for his other stuff.

>

> My basic question is, are you on your own with OCD/ODD and the rest

> with or without a formal label? Have you received outside help with

> your kids or did you have to " reinvent the wheel " for each of your

> children in helping them? So far this has been the case for me,

with

> my boy's autism and I suspect will be the same for the rest.

>

> by the way, my boy is home educated. The schools were damaging to

him

> because he was sensory overloaded.

>

> Finally, do you believe that ODD is real? Until now, i thought it

was

> B.S., but now i am thinking otherwise - thought i can see its very

> complicated and tied in with everything else. Nothing seems to

stand

> alone, its all tied up with the rest.

>

> thank you people

>