New to the forum - I am so glad I found you!

[aeditha17]

Super-quick nutshell...
I am the mother of 3 fantabulous kiddos. My oldest is from my first marriage and is 11. He was diagnosed with Tourette Syndrome at age 7 and ADHD at age 9. We have run the spectum of medications and are currently on nothing and doing remarkably well. Biggest problem with big guy and medications is that ADHD medications make Tourette's Syndrome tics worse - go figure! He's got his issues but we have finally gotten his Special Education accomodations, etc. straightened out (wow - it only took 4 years!) and I think we are going to survive. He's a sensitive kid and a smartie-pants, but he's developed enough of a thick skin that he's not so affected if anyone teases him. His best friend suffered a traumatic brain injury last year but is recovering very nicely, so they bond through their learning differences and their experiences.
Darling child #2 is the only girl and a self-proclaimed princess (aren't they all!!?). She was just diagnosed with Obsessive Compulsive Disorder (OCD) and ODD in December. We always knew she was peculiar becuase since she could get around the house at all she has been lining things up and putting things in order - the magnets on the fridge, the video tapes end-to-end ont he livingroom floor...etc...We've moved into the "my world has ended because you siad I couldn't have a pickle" 2-year-old raging screaming fits at age 5 and the grocery store is just no longer possible. She sometimes completely tunes you out when you are speaking to her and she turns into a 14 year old when she looks at you and delivers a bone-chilling "I said I don't WANT to, mom" at my request to wash her hands.
Littlest one is 4 and is the closest I have to a easy child. He has separation anxiety but he had some major medical issues when he was 13 months through 2 years, so I can explain that one right away! He's rough and tumble and will probably have a reserved seat in the ER before he turns 10.
I am a working mom whio wants to fix it all right now and i can't and it's killing me. husband has his own host of issues like panic disorder and PTSD. I have had him in the hospital 4 times inthese past 5 years. I am tired, sad, hopeful and ready to do whatever it takes but I am looking for some understanding shoulders and some wisdom to guide me.
I look forward to participating and meeting you all!
B

 

[SRL]

Hi B, welcome to our forum. If your board moniker here is your last name, I'd ask that you change it for the sake of your family's privacy.

It sounds like you have your hands full with your 3 little darlin's! If you aren't familiar with the book The Explosive Child by Ross Greene I suggest that you get a copy and study away. That, and getting thorough evaluations, are the number 1 and 2 pieces of advice around here. There's an article about adapting it to young children at the top of this board which is a good start but you'll definitely want to get the book.

Your comment about your daughter lining up toys, tuning you out, and raging fits, caught my attention. Did/does she have any speech differences at all--ie delays when she was younger, odd or adult sounding speech? I ask because lining up toys is a huge red flag for Autistic Spectrum Disorders. Here's a link to the highest functioning form of Autism Spectrum Disorders (ASD):
http://www.aspergersyndrome.org/

What kind of specialist diagnosed her and how much time was spent doing that evaluation?

Has she been evaluated by an occupational therapist? Some kids whose toy lining up is this constant do it to regulate their bodies in space, not as a manifestation of Obsessive Compulsive Disorder (OCD).

 

[SRL]

Here's another article for you to check out:
http://www.tsbvi.edu/seehear/fall97/sensory.htm

 

[aeditha17]

Thanks for the info.
I'll tell you - I was really thinking Autism Spectrum Disorders, and my gut has been telling me that for a long time. I even had her evaluated at age 2 by a school here due to her wierd language. They sent a grad student out to evaluate and said she was very bright and she was fine.
The Obsessive Compulsive Disorder (OCD)/ODD diagnosis came from a develomental pediatrician. We were there for 3 hours, but she really only spent 15-20 minutes alone with her. They did "testing" and that's where she came up with the ODD. We see the therapist on Thursday without her to discuss our strategies and whatever else before she begins to come and see her.
She is so difficult to pinpoint. I can tell there is anxiety, her dad has panic disorder - so it would not be a surprise. I can see there is a deep need to be in control and on her terms. She still makes up her own words and rarely does she give stuffed animals or objects common poeple names - they are always strange made-up words that have no meaning or basis. I'll say "oh! she's a really interesting doll! What's her name?" and she'll think an minute then say (very carefully and with much thought) "Sha-na-li-mia" I'll repeat it and she'll say yes and she'll call it that for an hour, then it will change. She plays with inanimate objects like apples or sticks or whatever she gets her hands on and she will name them and they will be people. Last Saturday, we had to take 3 apples to McDonald's play place becuase they were her pets. She has her 4 year-old brother playing along, too.
She's extremely creative and is sensitive to loud things. She likes scary movies, though - go figure! (we don't watch "real" scary movies, but things like Monster House that scared her brother silly seemed to enthrall her. She also like to tie up her Barbies - creepy, creepy, creepy. Am I babbling? I can't help it - i have had no outlet to discuss this with anyone knowledgeable so I am really hungry for thoughts and advice. thanks again a million times for this forum!!!!
B

 

[SRL]

How long ago was that developmental pediatrician evaluation?

It may not make a difference as far as school services go, but if it is Autism Spectrum Disorders (ASD) it would make a big difference as to understanding her and possibily helping her.

 

[aeditha17]

Thanks so much!
Her diagnosis was made just 3 weeks ago.
Again, many many thanks.
B

 

[aeditha17]

My issue here is that I know of only 2 developmental pediatricians here where I live and my insurance covers only one of them. She has labeled herself an ADHD physician so I can't help but think she might be a bit biased. Autism is making such a big showing in the media and in our collective awareness - is there another route I can go? My child's elementary school really stinks on the special education front. Believe me I have run myself ragged trying to get my 11 year old squared away with is Tourette's and ADHD. I am panicing that if we don't get the right things in place now, she will not have the best opportunities to succeed.
Truth be told, I feel like a big contributing factor has been my husband. His own mental illness and overal dysfunction has taken a toll on our family. I work full time and he can't really hold down a job. He tries to go to school but never quite completes anything. He has severe depression but is not medicated (and won't) and he relies on Xanax to treat his anxiety. I am from a very stable, "normal" supportive home so this situation makes no sense to me at all. I feel a little like a small donkey trying to pull a cart full of Sherman tanks up a mountain. I am determined, stubborn and will pull till I drop, but I am just not getting anywhere.
I plan on getting The Explosive Child and praying that husband will read as well and participate.

 

[SRL]

I'm not trying to sway you away from a diagnosis if what you think you have is accurate but the red flags for Autism Spectrum Disorders (ASD) are there. If they're borderline, then so be it. It would help you to know that and most likely you can look to the Autism Spectrum Disorders (ASD) camp for help--I'm all for borrowing from whatever camp has workable strategies! It would also help you to know if she's borderline to keep your eyes open in the future. Sometimes changes such as increasing social demands in school or transitions (such as to the middle school) can making a borderline situation fall one way or the other.

It is important that the school address anything that could cause impact in the educational setting. What I'm hearing from families is that because Autism Spectrum Disorders (ASD)'s are getting so much attention right now, schools are more apt to provide services to students who are borderline whose doctors go ahead and make the diagnosis. My borderline kiddo got the services without the diagnosis, but I was sweating it until the papers were signed.

Has the developmental pediatrician sent you the report yet? Sometimes it helps if the doctor includes a statement such as "Some Autistic traits" if the child has some traits present. It can give some leverage plus some direction. Also helpful is if the doctor gives recommendations in the report as to specific types of services the school should be providing.

Has she had a speech evaluation, including for social speech?
How about occupational therapy?

Don't have the developmental pediatrician send a copy of the report to the school district. Review it first.

How is she doing socially?

Hang in there, hopefully we can come up with some direction to give her the help it sounds like you need.

 

[aeditha17]

SHe seems eager to be social, though she is extremely controlling which drives some kids away. SHe also can get really upset when the play doesn't go exactly her way so in that sense, she has issues. We have had no other evaluations except for the dev. pediatrician. and our experiences with a gastroenterologist for her refusal to go #2. She just started voluntarily using the toilet this past month - a VICTORY! She'd been to the ER 3 times to be disimpacted because she wouldn't go to the bathroom. We spent so much time and $ on prescriptions for chronic constipation when all the while I think now that she was holding it on purpose.

I will explore the Occupational Therapist (OT) and Speech therapy evaluations. I wonder if I can self-refer for that or if I need the dev. pediatrician. to do that. Our regular pediatrician is pretty good about following my lead (I am the one who suggested my oldest be evaluated for Tourette's) so maybe I can go that route if I have to.

I am just in a whirlwind of things going on and truth be told I am seeing little things begin to crop up with my easy child (4 y/o) but I am afraid to say anything because I already get the eye rolls and the facial expressions when I start talking about my other two sugar-bears' issues! I am NOT trying to find reasons or excuses for their behavior that will get them off the hook of responsibility. They all come from genetic backgrounds that pre-dispose them and the past 5 years of their lives have been anything but normal.

Whew - sorry. This is years of dealing with a Tourette's child and a husband who's been hospitalized several times with his panic disroder on my own coming out.... I will move forward as you suggested and keep you posted. I have a meeting with the therapist tomorrow am and I will bring up the Occupational Therapist (OT) and speech with her to see what she has to say about it.

Thanks a million!!!!
B

 

[aeditha17]

Great news!
husband and I went to the 1st therapist meeting and it was really good. She was able to make my husnand aware that her Obsessive Compulsive Disorder (OCD) is anxiety-driven and he seemed to have an eye-opening experience. The therapist even wants to meet with him one-on-one.

We are going to move forward with Tab cautiously and allow the therapist to do some observation as well. Since her diagnosis is so new, she said that amendmnets and adjustments to her diagnoses are always a possibility as we "dig in" a little bit. I agree.

I am having a problem with her school, though. Now they are back-tracking on their willingness to start the process of identifying her for either 504 or Special Education. I have her Dr. and her therapist's support, so I dare that school to tell me no - i just DARE them! They screwed up with my son far too many times in the past. They will NOT do this to us again. I will pull them in a heart beat and home school until we find the right situation. Evil people......

OK. Done now. Must eat chocolate.
B

 

[Lulu]

B, sounds like you are busy busy busy jumping through so many hoops to get your daughter the education she deserves. I am following your trials closely and taking notes. I could be in your shoes in one year's time. I am scared of the "eye rolling," especially my family's faces.

I'm so glad the therapist is getting your husband on board.

 

[BellyKate]

Hi Aeditha.

I'm still pretty new around here but I wanted to say hello, and let you know I have a 5 year old daughter who sounds similar to your daughter in some ways ! She was recently diagnosed with Aspergers and ADHD and for quite some time I have been saying she already seems like a teenager in so many ways !

My girl is into door slamming as she screams "I want to be alone, mother" , rolling eyes at just how ridiculous she thinks her mother is etc etc.

I think all of us here deserve medals... actually, all expenses paid holidays to the destination of our choice, without the kids, would be preferable to a medal hehe.

Take care.

 

[SRL]

Lulu, the trick to help deal with the eye rolling is to not inform family members of anything until the evaluations are through and you either have a rule out or diagnosis in hand. Even then it's often hard for the parents (it's the gene pool thing), but at least then you don't have them second guessing you all the way through the evaluation process.

 

[aeditha17]

My problem is that my parents (who are very supportive) live 5 blocks away and have daily interaction in our lives. My mom can flash back to her rural south texas upbringing and get brass tacks on you, but she is also a former pedi ICU nurse who's father was a depressed, suicidal alcoholic so she does have some personal understanding.
The eye rolls for me come from the school and from my kids teachers. I got a phone call yesterday from my 5th grade son. He and his science teacher were calling me together because my son had "made a loud noise" that was disruptive to the class.The teacher siad he ahd alreaddy asked him not to do that, but he did it again even louder. The teacher tried to describe the noise but couldn't. I finally asked him "does it sound kind of like a hawk screeching?" and he said "Yes!". I told him that it is a noise Aedan likes to make. I said I would discuss with him the appropriate times to make those kinds of noises but that i wanted to touch base with him and see if we had another tic developing (because Tourette's tics wax and wane and come and go). As soon as I said this, he chuckled to himself with a "whatever" kind of tone. Like "here we go with the Tourette's thing again". GGGGGRRRRRRRRRR!!!! I could have screamed!

Now, my daughter's kinder teacher, who has been a saint, is hesitant to fill out the paperwork for the ARD I requested. She said that she wasn't really making any accomodations for her right now that she wouldn't normally make for other children and that she didn't want to put unnecessary accomodations in place. I told her that I knew she was doing well right now but that she had the potential to really have problems and i didn't want us to be pulling our hair out halfway through 1st grade trying to initiate this process. Better to get this ball rolling now before the crisis than after. I have the formal diagnosis. She herself has a 3 y/o with Obsessive Compulsive Disorder (OCD) - I can't understand where this is coming from. 5 months ago she was ready to do whatever we needed. The therapist thinks that she has become accustomed to Tab's behavior and is very tolerant of it because of her own experience so to her it doesn't seem to be a problem - I think I agree.

I tried to catch the school counselor as she and the VP were on the way out the door but she seemed to dodge me. I was able to rattle off that her teacher was hesitant and she said "Iknow, I'll call you later about it and I am going to talk to the VP on our way to our meeting" and with that she was out the door and gone. <sigh>

Calgon - take me away!
B

 

[SRL]

Teachers who are hesitant to fill out paperwork for the process often are either under the thumb of the district to minimize sped referals or else it's a personal thing where they think referring might reflect poorly on them as teachers (ie can't handle it).

It sounds like your district needs to do some districtwide teacher training on Tourette's! Have you reqested that? Our district often offers inservice training on various topics like that.

 

[aeditha17]

I have requested, suggested, brought in materials from the Tourette's Syndrome Association, invited teachers/administrators to our support group, etc.....no takers. I have been fighting with them for 4 years now. Rumor has it that the middle school is much better with special needs kids, so I just have to hang on for 5 more months!!

There is an all day conference on SpecEd hosted by our regional service center in Feb. I have registered and I am going to rewuest with our principal that one of Aedan's teachers go and any others from the school should be encouraged to attend.

Thanks for your insight -
B