Hello - new to special needs.

[Thing1Thing2]

Hello, I'm Bonnie, I have one 3 year old DS and another (boy) on the way. I am new to the special needs section of Mothering.

My son was exhibiting some sensory problems, so I brought him to the ped. I wanted to get it checked out. It surprised me when she told us he may be on the spectrum - since I really only thought he had sensory issues.

She wants us to see an OT right away. I'm nervous and kind of shocked. He's always been an intelligent boy, speaking in complex sentences and completing puzzles way ahead of his peers.

But he also has some issues, like screaming in the bathtub for a half hour because we washed his hair. I used to work my way around these type of things, being very gentle and always having to play some sort of game to get him to do things like get dressed and have his hair brushed - but now Im pregnant and still very sleep deprived and my patience has worn thin. 

I feel like crying because I don't have the mental capacity to help my son anymore - to tiptoe around all of his intolerances and try to make things easy for him. And I dont know what it's going to be like when the new baby comes. I'm not sure I have what it takes to be the best mother for this child.

I have a call in with the dept of health, since he will be three in June and hopefully I've made the cut off time. But the Dr. also wanted a pediatric neurologist to see him as well. I'm not sure what will be happening at either appointment and would like to know if anyone can give some idea of what to expect.

Bonnie

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[SpottedFoxx]

{{{hugs}}}  I'm sure your pediatrician is lovely but they are not qualified to make a diagnosis of autism spectrum disorder.  Many children have sensory processing disorder and are not on the spectrum (my son being one of them).  In fact in 75% of the cases, it's a stand alone diagnosis.  

I do agree with seeing an OT - they really are the best to diagnose and deal with a sensory processing disorder.  I'd also see a developmental pediatrician or the neurologist (although I've seen both and prefer the developmental ped vs. a neuro).  They ARE qualified to determine if your son is on the spectrum or not.  

Congrats on your pregnancy!

[crunchy_mommy]

I'm in a similar position to yours in that we are just now going through evaluations etc. with my 2.25yo and I'm still not sure what to expect. I know he has sensory issues and now I realize he may possibly have even more issues than I originally thought... i.e. he seems to fit a lot of the criteria for PDD, ASD... but seems very very high-functioning so maybe not... and his communication (and general development) always seemed very advanced but some oddities have really come into relief recently. We'll see how things go and what 'the experts' say. Luckily he is still under 3 so he qualifies for EI & will almost definitely be eligible for services regardless of whether he has anything diagnosable.

But the one thing I'm trying to keep in mind, and that I want to share with you, is that he is the same kid he's always been (no matter what label is slapped on him, or how many issues he has, or whether or not he qualifies for multiple therapies). And though I hope to learn some new techniques through EI services, I also believe I've already been doing this since the day he was born -- and so have you. You may be new to the whole doctors/OT/diagnoses/etc. thing but you are not new to parenting your DS and you will continue to be a great parent to him -- if anything, you will learn ways to cope even better. A label doesn't change who you are or who he is or how you two interact. Obviously your pregnancy may make things tough on you guys for a bit but you will adapt. I am sure you are ALREADY the 'best mother for this child'

[Emmeline II]

Originally Posted by BonnieNova 

My son was exhibiting some sensory problems, so I brought him to the ped. I wanted to get it checked out. It surprised me when she told us he may be on the spectrum - since I really only thought he had sensory issues.

She wants us to see an OT right away. I'm nervous and kind of shocked. He's always been an intelligent boy, speaking in complex sentences and completing puzzles way ahead of his peers.

I have a call in with the dept of health, since he will be three in June and hopefully I've made the cut off time. But the Dr. also wanted a pediatric neurologist to see him as well. I'm not sure what will be happening at either appointment and would like to know if anyone can give some idea of what to expect.

Bonnie

Don't panic because the doctor said neurologist. As a pp said, your boy is still the same child he was before the appointment .

Child neurologists combine the special expertise in diagnosing and treating disorders of the nervous system (brain, spinal cord, muscles, nerves) with an understanding of medical disorders in childhood and the special needs of the child and his or her family and environment.  

http://www.healthychildren.org/English/family-life/health-management/pediatric-specialists/pages/What-is-a-Pediatric-Neurosurgeon.aspx

Often a developmental-behavioral pediatrician works collaboratively with a team of professionals. This team may include a psychologist, speech-language pathologist, occupational therapist, physical therapist, neurodevelopmental disabilities pediatrician, child psychiatrist, child neurologist, nurse practitioner, physician’s assistant, educational diagnostician, or clinical social worker. 

www.healthychildren.org/English/family-life/health-management/pediatric-specialists/pages/What-is-a-Developmental-Behavioral-Pediatrician.aspx

I think getting an OT evaluation is a good idea and it's probably the quickest to get done and will be most helpful on the sensory issues. My son was 6yo before we started seeking help. We tried a family therapist first, then an OT evaluation, a psychiatrist (we were pretty sure he was ADHD at that point), and finally a developmental-behavioral pediatrician at the behavior clinic at a children's hospital.

My son's current diagnoses are:

1.      Mild to moderate pragmatic language disorder.

2.      Social developmental delay; in part due to ADHD.

3.      ADHD combined.

4.      Disruptive behavior.

5.      Anxiety (performance and social anxiety)

6.      Chronic motor/vocal tics

7.      Possible CAPD.

8.      Hyperacusis/sensory concerns.

Regarding my ds and Asperger’s, the Dr. said that he appears to meet the criteria but that he was a little young for diagnosis and that the ADHD complicates the picture (she went into a lot more detail than that; apparently the diagnostic team spent a lot of time debating this point). We will reevaluate in a year – added maturity and addressing some of his other issues may give us a clearer picture~~so my nearly 7yo was considered too young for an Asperger's diagnosis.  My son is at or above grade level at school and was considered for the gifted program at two different schools (I suspect his behavior at the first kept them from following up on that, and the second school ended up not accepting anyone below 3rd grade).

Edited by Emmeline II - 5/10/11 at 5:02pm

[Linda on the move]

My name is Linda and I have a DD who is on the spectrum and gifted. She's 14 now and feels that being neuro typical is highly over-rated.

I totally think you are doing the right things to make those appointments and get all information a support with your child, but I want to warn you that even with wonderful specialist, it may not be clear exactly what is going on with him. At age 3, my DD was given a variety of labels including "autistic like behaviors" but not actually autism. Later, than changed to PPD-NOS. Last year and 13 she had another eval and officially has Aspergers.

I think that part of making peace with having a special needs child, is making peace with the un-known. We didn't know that my Dd was gifted until the testing last year because before she couldn't really comply with the testing that well. She always seemed bright, but no one had any idea HOW bright until she was 13. It sounds like your little has real strengths -- hold on to those. They will help in so much with whatever it is that seems to be his struggles.

take care of yourself and get some rest.

And if you are bored and looking for a good book to read, "Quirky Kids" by Klass is one of my favorites. It's about kids with sensory issues and other mild special needs. It talks about the dx process and different issues that come up at different stages.

[Thing1Thing2]

Thanks everyone for the responses. I really appreciated crunchy mamas perspective - that is something I am trying to keep in mind through all of this.

I found out today that unfortunately, Ds is too old for the Early Intervention program. By the time they get him in, he will be three. The school district does offer some help though, and I have a call in with them. I called all over the place today trying to get him appointments with Ot's and neurologists. I didn't realize how hard it is to get a hold of someone - and now they are saying that my insurance might not cover an evaluation.

I am looking for a good book to read, and will find Quirky Kids at my library. I totally understand about making peace with the unknown, Linda. It's difficult because I want to do everything I can to help him, but feel like I dont know how. I know this is a step in the right direction - but have no idea where we are going!

DS was up crying again last night. I'm going out of my mind with sleep deprivation and it seems it has just gotten worse since Ive gotten pregnant and weaned him.

Emmeline, thanks for the detailed information. I was wondering if you get an Aspergers diagnosis, will that cover the other diagnosis' your son has? Or will it just add to the list? Not sure if the question is clear or not - but my DS is throwing books all over the place bc he wants my undivided attention. Hope you understand...

[Emmeline II]

Originally Posted by BonnieNova 

Emmeline, thanks for the detailed information. I was wondering if you get an Aspergers diagnosis, will that cover the other diagnosis' your son has? Or will it just add to the list? Not sure if the question is clear or not - but my DS is throwing books all over the place bc he wants my undivided attention. Hope you understand...

The conditions (SPD, ADHD, Asperger's) can be co-morbid.

[Thing1Thing2]

Yes, you understood my question perfectly. I was just trying to figure out if the Aspergers diagnosis would give you that "aha" moment.  But I realize it is not as easy as that.

So what Im understanding so far is that my DS could be diagnosed with a variety of different conditions, and some or none of those could be related. That is something that is going to be difficult for me to accept.

Thanks again for all of the advice - Im hoping to get to know you all much better. I think I know crunchy mama from the allergies section - but Im not sure if it's the same crunchy mama.

[Emmeline II]

Originally Posted by BonnieNova 

So what Im understanding so far is that my DS could be diagnosed with a variety of different conditions, and some or none of those could be related. That is something that is going to be difficult for me to accept.

It's more like this

http://t1.gstatic.com/images?q=tbn:ANd9GcS7LLLi-51K0P8bzopMuGutlQLdQNGVYWKoEPDtO3tsW2JAe_hN

There is just such a range of development up through 7yo; it is difficult to determine what is a "problem" and what will be grown out of. But ds' DP said to me that though she couldn't diagnose Asperger's at this point, we could act as if he was, meaning that we treat the issues that "are" even if it is an "Asperger's" geared therapy.
 

[Thing1Thing2]

The link you sent was a picture of three circles, there was no other info on the page. I'm thinking the picture explains the overlapping of conditions involved with different diagnoses.

[mom2mygirls]

hugs

[Emmeline II]

Originally Posted by BonnieNova 

The link you sent was a picture of three circles, there was no other info on the page. I'm thinking the picture explains the overlapping of conditions involved with different diagnoses.

That's what I was going for.

[physmom]

.  I replied on your other thread but wanted to make a comment on this...

Originally Posted by BonnieNova 

But he also has some issues, like screaming in the bathtub for a half hour because we washed his hair. I used to work my way around these type of things, being very gentle and always having to play some sort of game to get him to do things like get dressed and have his hair brushed - but now Im pregnant and still very sleep deprived and my patience has worn thin.

We've experienced that too but for nowhere near a half hour because we try to set speed records getting DD's hair washed. Typically during the time she washes her hair she's jumping up and down screaming at us.  What HAS helped, though, is that we've been going swimming about once per week and she's become much, much more accustomed to water.  She's always liked water (she's actually OBSESSED with getting it on her hands and could leave her hands in running water for hours if we'd let her) when she can sit down in it like a bathtub and control the environment but being splashed or having water on her head was pure torture!  We've been swimming once a week for about 2 months now and we've seen a drastic difference.  She still complains but last time was the first time EVER in her whole life that she didn't cry during the shower.

In the pool we've been working on swimming, and floating on her back (I think that's been the biggest help because she's realized you CAN get your hair wet without your face if you're calm about it).  We also will jump up and down and dunk her for a second when we land (our pool is too deep for her to stand alone in it) so she's getting more used to water in her face too.  Plus, pools are great when you're pregnant!  Getting out of them isn't always fun but being in them in the first place is wonderful.

[Thing1Thing2]

Yes, thats exactly why he doesn't want his hair washed - his face gets wet! But we don't wash his hair for a half hour - he just *cries* for a half hour after we wash it. And like your DD, he jumps around and screams alot!

I noticed he's better when we pretend to get soap in his hair by mistake and apologize and then say something like "Oh - now we have to take the soap out". But I don't feel comfortable with that, because I don't want to ruin the trust we have. But then again, I can't leave his hair dirty, especially since I have chemical sensitivites and when we go out, his hair comes back smelling like perfume from people holding him.

I am going to try having my husband bring him in the pool though, because he loved swimming last year (I get sick from the chlorine). I'm on the East Coast, so it's a little too cool for pool weather now, but maybe this year we will join the YMCA. I heard swimming is especially good at tiring them out.

Oh- and would you figure... I finally got a call back from the school district. They can't do any evaluations until I hand in his "immunization" record. He's not vaxed - so now I have to get a religious exemption letter together.

[physmom]

Originally Posted by BonnieNova 

Yes, thats exactly why he doesn't want his hair washed - his face gets wet! But we don't wash his hair for a half hour - he just *cries* for a half hour after we wash it. And like your DD, he jumps around and screams alot!

I noticed he's better when we pretend to get soap in his hair by mistake and apologize and then say something like "Oh - now we have to take the soap out". But I don't feel comfortable with that, because I don't want to ruin the trust we have. But then again, I can't leave his hair dirty, especially since I have chemical sensitivites and when we go out, his hair comes back smelling like perfume from people holding him.

I am going to try having my husband bring him in the pool though, because he loved swimming last year (I get sick from the chlorine). I'm on the East Coast, so it's a little too cool for pool weather now, but maybe this year we will join the YMCA. I heard swimming is especially good at tiring them out.

Oh- and would you figure... I finally got a call back from the school district. They can't do any evaluations until I hand in his "immunization" record. He's not vaxed - so now I have to get a religious exemption letter together.

That's why we do separate baths for her hair vs. the full body.  She'll get baths for her body almost every day but we only was her hair about once a week.  I get the chemical sensitives, I also have problems with any sort of perfume and have problems with Chlorine when I'm pregnant (I'm fine now, thankfully!).  Fun stuff being a quirky parent too!  Definitely see if your DH can take him, though, like you said it really helps with energy levels too! 

I hope you can figure out the whole school/immunization situation.  We're having to wait too before we can see an OT and get an official Dx and it's so frustrating!
 

[Emmeline II]

Originally Posted by BonnieNova 

I am going to try having my husband bring him in the pool though, because he loved swimming last year (I get sick from the chlorine). I'm on the East Coast, so it's a little too cool for pool weather now, but maybe this year we will join the YMCA. I heard swimming is especially good at tiring them out.

Oh- and would you figure... I finally got a call back from the school district. They can't do any evaluations until I hand in his "immunization" record. He's not vaxed - so now I have to get a religious exemption letter together.

Does your state require a letter or do they have a form? You could also post on the 'Choosing Not to Vax' board.

[Thing1Thing2]

The school district has a form that I have to pick up. I think I've found it online though. It is just 3 sheets of lined paper with instructions about writing a paragraph in your own words.

The form has to be notarized and given back to them with some documents. 

I think I will do some searches on the vax board, since I'm not really sure what to write and I don't want to be denied. 

[Thing1Thing2]

 and wow - I had no idea how difficult it would be to get an exemption letter ...

Edited by Thing1Thing2 - 5/15/11 at 8:03am

[Emmeline II]

Originally Posted by BonnieNova 

... and wow - I had no idea how difficult it would be to get an exemption letter approved in NY...

The NYC area is the most difficult as most or all of them are filtered through one person; outside of NYC there is a good chance you won't run into much trouble.

Several MDCrs in NY have had their letters reviewed by this group

Coalition for Informed Choice

[Thing1Thing2]

Thanks for the info, Emmeline.  I hope it will be a little easier for us.

With the info you provided, I think I have a great letter put together that Im going to drop off later on today. I don't have the money to pay for a consultation at the moment, so Im just going to do my best and see what happens.

Edited by Thing1Thing2 - 5/15/11 at 8:03am