Hi! New here.

iVillage Member
Registered: 07-10-2007
Hi! New here.
12
Tue, 07-10-2007 - 6:35pm

I used to be active on a few boards here years back, but life has just been too crazy to find the time. I have a DH, Paul & 2 DC, DS, Jeremiah (6, almost 7) and DD, Joenna (3).

DS was dx w/Asperger's spectrum W/ADHD & OCD/Anxiety disorders. I cried when I first got the dx, but also felt a bit relieved that we weren't crazy, we weren't bad parents, that what we saw & experienced w/DS was real and we can now deal with it. I first read an article on i village a few years ago on raising spirited children & felt that was DS to a T. (http://parenting.ivillage.com/gs/gsbehavior/0,,45pv,00.html) I brought it up to his ped. at the time & he said he was just a normal boy. I am a middle school teacher & have taught many students w/various disorders, but never taught anyone dx w/AS until a couple of years ago. That's when I started looking into it & really thought to myself that's sounds like DS. I also realized that he seemed to have OCD tendencies. DH & I do too, but are not clinically OCD.

We had a high speed head on collision 1 1/2 years ago that our whole family was involved in. Thank God the kids were physically alright since they were properly restrained. I was bruised & sore for a couple months, but DS had his foot shattered & went to emergency surgery & was out of work for 7 months. This was a very traumatic experience for all of us, but especially DS. We began taking him to a therapist then & fears came out. She also thought he might have ADHD & suggested going to a child psychiatrist. We were not happy with him, but through the nurse at my school we found an awesome ped. that specializes in ADHD & other disorders. We now see him and are starting to see a child psychologist in comjunction w/him. We had him evaluated through the school psychologist as well and we now have a 504 plan in place for him.

His symptoms are difficulty reading others in social situations,will often stand too close to others, will talk about things even though the person shows no interest in the subject, doesn't have many friends, intense focus on things of interest, lack of empathy, lack of coordination, uncomfortable w/change, sensitivity to loud noises, focus on math/fixation w/numbers, fixation on rules & enforcing rules, lack of attention, forgetfulness, loses things, easily distracted, can't sit still long, constantly out of his seat at school, loud, hyper, talks excessively, blurts things out, difficulty waiting, interupts, impulsive, angry outbursts, aggressiveness, sensitive to criticism, he has to do things in certain orders & in certain ways, he lines things up and gets upset if anyone messes them up, he is a perfectionist, he gets angry when people don't do things the "right" way, must finish things, has fears of germs and must wash hands & shower thoroughly, can't touch his shoes, & worries excessively.

I am mainly concerned with not knowing what he is thinking (he doesn't share his fears or many of his other thoughts with me - he says because he forgets) and dealing with his aggression. He was on Zoloft which worked great for his OCD/anxiety (he didn't worry about a thing!), but triggered his ADHD symptoms & made him much more uncontrollably aggressive. He is now taking Metadate CD which helps him pay attention a lot better & control his hyperness & impulsivity. He also started taking Straterra.

I guess I came here for support and advice about how to deal with DS. I used to think he could control things (years ago) & felt he was just "pushing my buttons" and would get very angry & yell, which made things worse. Now that I understand him a little better, I don't get as angry or yell as much, but it is still very difficult to deal with. I know we are headed in the right direction, but I could use all the help I can get.

TIA

Janet

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iVillage Member
Registered: 10-18-2006
In reply to: janet07
Tue, 07-10-2007 - 8:43pm

Welcome. I've only recently joined this board, but have found it a wonderful place for support and information. Your "lightbulb" moment sounds similar to mine. DD is five and we are starting the process of getting the dx. we've been through several dx's and none have relly felt right. Through this nearly 2 year process dr's have asked about Autism, but I'v always brushed them off, because DD has friends. Then I was doing some research for a kiddo on my case load (I'm a social worker) who has Asperger's. It was the first time I had actually read the diagnostic criteria. Sitting at my desk, reading it, I started crying. It fit so well.

This has turned into a really long welcome, so i'll end with welcome to the bored and we're glad you're here.

iVillage Member
Registered: 07-10-2007
In reply to: janet07
Tue, 07-10-2007 - 11:16pm
Thanks for the welcome! I've lurked a bit the past couple of days & it sounds like a great & supportive group. It's good to know there are others who know what I am going through.
iVillage Member
Registered: 06-02-2004
In reply to: janet07
Wed, 07-11-2007 - 12:13am

Hi Janet! Welcome to the group! It's a great group of very supportive parents who will understand what you're going through. I hope you find it as helpful as I do.

Amy~mom to Natalie (10 yrs.) and Lily (4.5 yrs., pdd-nos, sensenbrenner syndrome)

iVillage Member
Registered: 07-10-2007
In reply to: janet07
Wed, 07-11-2007 - 12:44am
Thanks for the welcome Amy! It's good to find a group of others who understand what I go through.
iVillage Member
Registered: 03-20-2003
In reply to: janet07
Thu, 07-12-2007 - 10:18pm

welcome to the board, Janet!


I can relate to your comment about not yelling as much once the dx was in place.

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iVillage Member
Registered: 04-09-2003
In reply to: janet07
Thu, 07-12-2007 - 11:50pm

Thanks for the welcome Debbie!

It's nice to know that I'm not the only one who has/does struggle with getting upset & yelling. Thanks for the recommendation on that book. Hey, OT, but I discovered we have something else in common. I checked out the Refuge Radio link you had & it's a lot like the station I listen to. I guess that means you are a Christian? Me too. Here's a link to the station I listen to. http://www.air1.com/ You can listen online too.

Janet

iVillage Member
Registered: 03-20-2003
In reply to: janet07
Fri, 07-13-2007 - 5:19pm

wow - that is amazing, they sound VERY similar!

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iVillage Member
Registered: 04-04-2003
In reply to: janet07
Tue, 07-17-2007 - 9:13pm

Hi Janet. I'm new too. New to the board and new to the diagnoses of PDD-NOS for my DD, Abby (4). I have cried many tears since then, mostly related to the guilt I feel for getting so angry with her for being so oppositional about everything. As a first time mother of this only child I didn't trust my insticts (or chose to ignore them). I take my job as her mom seriously and will do everything I can to help her learn to understand herself, appreciate herself, and cherish herself--as much as I do.

Patty from Boston

Patty and Abby 1/28/03

Avatar for stephsmom98
iVillage Member
Registered: 03-28-2003
In reply to: janet07
Wed, 07-18-2007 - 12:36am

Hi Janet:

Sorry it took so long to say hi and welcome. You are definitely not alone.

I am another Debbie and also a Christian. My daughter has the same dx as your son plus she also had seizures which her neurologist thinks is about gone.

I'm sorry about the car accident, but glad to hear no one was seriously hurt.

That's great that his Ped is a specialist in that area; that really helps. Our DD's neurologist is a big help for us. She wants her to see a psychiatrist again though, but I hate to have her on more medicines. We are thinking a psychologist might help for now for her anxiety issues.

We homeschool and are getting secondary insurance to supplement ie. speech therapy, testing for auditory processing problems and occupational therapy (which we had before until insurance refused to pay for any of it - insurance will not pay for anything related to autism, but thank God the hospital rode off the cost).

My DD sounds a lot like your DS. She talks almost all the time with endless questions and won't think for herself. She is a sweetie, but very tiring and it can be frustrating. She can repeat herself over and over again and it is usual by saying something negative. She also has lack of coordination and won't trust herself or others. She always thinks she is going to fall and right now has an anxiety about going up steps of any kind.

DD was on Zoloft, but it didn't help much as well as the Strattera so she is off all those right now. They also gave her Risperdal, but that didn't help either. I'm glad the medicine is helping your son concentrate better. We were told by the occupational therapist to not have her sit too long for studies and to get up every half hour or so and to brush her arms and legs and then massage them with lotion and use her muscles every hour. This, they say, helps her to concentrate. I am not sure how well it is working. I mean, it helps sometimes, but some days she doesn't concentrate no matter what. But for the most part, she is getting better in that area. It works well to teach her at home, but at times she just doesn't get it.

You have come to the right place for support.

Take care.

Debbie T (to distinquish myself from the other Debbie :)

Debbie, Mom to my "only" Stephanie
iVillage Member
Registered: 07-10-2007
In reply to: janet07
Wed, 07-18-2007 - 1:28am

Thanks for the welcome! It is nice to meet you Debbie T. I noticed your cross & thought you might be a Christian too. I also read from another post about your DD & she did remind me a lot of my DS. What you said about her in your post to me sounds almost exactly like my DS! Did you say your daughter had epilepsy? I was diagnosed with a form of epilepsy when I was younger by a ped neurologist & grow out of it as I hit my preteens/teens. Now I wonder if that could be related. Do you think I should take my DS to a ped neurologist? Is it necessary or recommended to do any neurological tests for diagnostic purposes?

DS's meds were working great when he was just on Metadate CD, but once Straterra kicked in the ADHD symptoms got a bit worse. We are waiting a bit longer to see what we will do. He just started seeing the psychologist, this Friday will be his 2nd time, so I guess we will begin getting some recommendations for behavioral therapies shortly. The lotion/massage thing is interesting. I might try that.

I wish you all the best with your insurance/coverage issues.

Janet

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