needing a soft place to land today

[victorearose]

Hi Everyone,

I am looking for the soft place to land today. Had a super-busy weekend. difficult child did GREAT and I am very proud of him. It is stressful and tiring, though ... even when we had a good day.

We went to see my niece in a play - it was a family affair with my brother and his wife and four kids and two sets of grandparents also there. difficult child refused to get out of the van when we got there. He hid on the floor between with 2nd and 3rd row. I took my things into the house, asked my sister in law where I could take him to decompress and went back out to get him. I explained to him that I understood that we hadn't been to Uncle's house in a long time and that he was shy but he could not stay in van because it was too warm and not safe and Aunt said we could use the office for him to calm down in. So he came inside and crawled into the dark, empty, dining room calmly until he was ready to see people. No screaming, kicking, biting, or hitting. He did great and I think I did too. But dealing with the questioning looks ... that is something else. Feeling judged ... like he is spoiled, needs a swat, whatever. It gets old after a while.

I now am thinking difficult child has Aspergers and I have requested an evaluation by the school. I am also arranging for a private neuropsychologist evaluation through the local children's hospital.

I have so many emotions running around inside of me right now. . .

Anger - Yes, I am angry at the school mostly. My ongoing frustration with them is that they do not make recommendations for screening him. They never have. Each year, it seems, the teacher just hopes to get through the year with him and hope that he continues to have good grades and then he will be someone elses problem. What is the obligation of the public school system to recommend screening for suspected disabilities? His teacher last year, after she wasn't his teacher anymore, said he reminded her of her child with Aspergers. Did this just dawn on her 9 months later?

I am also angry that difficult child did great last week asking for cool-off time when he was getting mad in PE because other kids weren't following the rules. This is part of his IEP and he got told no - that he could cool off while continuing to run laps! Okay, last year (or was it the year before?) he shoved kids in PE that didn't follow the rules. Now he is doing what we have been teaching him to do to calm himself and he is not allowed to do it???? AAAAAAAAAAARRRRRRRRRRRRRGGGGGGGGGGGGGGGHHHHHHHHHHHHHHH!!!! The behavior specialist at the ARD last week said difficult child is 'trying harder'. What BS!! difficult child tries harder than anyone to be good and have appropriate behavior! He is not trying harder than he was at the beginning of school! His medications are kicking in now and are giving him the one or two seconds he needed to make the appropriate decision! His effort is the same as it has always been. behavior "specialist" says he can control his behavior and is held to the same standards and tantrums are not tolerated for anyone, whatever their diagnosis is. What an idiot! If difficult child is tantrumming, in my experience, something is going on and it could probably have been avoided with some forethought and planning and could probably be diffused if recognized before he loses control. If consequences, like losing recess was going to teach him not to tantrum, it would have a long time ago.

Sadness - The more I learn about Aspergers the more it fits. I've been through so many years of trying to figure out what is different about him. Neurologist says 'ADHD with tics'; but he has 'traits of Aspergers and Obsessive Compulsive Disorder (OCD)'. I am anxious to get the appropriate diagnosis and see what the school does with it.

Frustration - Again, what is the school's obligation to recommend screening? I am frustrated that the people who should be the 'experts' are stupid, or don't care, or choosing to not see what is going on so he doesn't get the label that will obligate them to allocate resources to him. I recently looked at a private school for him. The director probably spent over 3 hours with me prior to and during meeting with him. He has never met my son. Yet understands him better than the people who have been working with him for the past 4 years! He was able to complete my sentences when I was describing example scenarios to him! It was so refreshing talking to someone who finally understood; yet frustrating that those that know difficult child don't "get it".

I'm sorry for the long post. I really needed to vent. I think I am PMSing also, which isn't helping.

:smile: Thanks for being here for me ... I am feeling particularly battle-weary today.

Tressa

 

[Sheila]

You can't wait on this school district or you'll get just what you've already gotten. Also, "screens" miss too many things, so you don't really want that.

You can parent refer for the evaluation. There are sample letters in the archives that can help you if you need them. The main thing is to send the letter via Certified Mail.

Even if your child were to already have an IEP, you can request additional evaluations. But again, via Certified Mail.

If you need further assistance, visit the Special Education Forum.

It's so frustrating....I know your pain.

 

[meowbunny]

Do go to the education forum for help on the school issues.

I think the way you handled your son at his uncle's was awesome! And what a brave young man to be willing to get out of the van and possibly face people before he was ready. Here's one lady who is doing high 5s for his strength. So, both of you take a bow for handling a potentially damaging situation with such grace and strength.

 

[BusynMember]

The school likely doesn't know Aspergers from a hole in the wall. I would never trust anyone associated with the SD to diagnose my son. Even the psycologists don't seem to "get it." My biggest, most heartfelt recommendation is to see a private neuropsychologist, even though they have long waiting lists. You can find them at Children's and University Hospitals. I wouldn't trust one affiliated with the school district. They have an agenda. in my opinion private NeuroPsychs are the only ones that take the time and do the testing to sort out the child's problems so that they are pointed in the right direction. By the way, Aspergers is Pervasive Developmental Disorder (PDD) without a speech delay. If there was a speech delay, I am told, then the child is Pervasive Developmental Disorder (PDD)-not otherwise specified (atypical autism).
My Pervasive Developmental Disorder (PDD)-not otherwise specified son was misdiagnosed and wrongly medicated for both ADHD/ODD and then bipolar. He is clearly Pervasive Developmental Disorder (PDD). It is amazing how nobody believed me when I kept asking about it, which made me doubt myself. I'm going to post a test from Childbrain. It is a test for any sort of Pervasive Developmental Disorder (PDD) (Pervasive Developmental Disorder (PDD)-not otherwise specified, Aspergers or Classical Autism). You can see if/where your son falls on this scale. Although it is not definitive, people I post with on an Autism Spectrum Disorders (ASD) site find it very accurate. I sure did. Here goes:
http://www.childbrain.com/pddassess.html

Good luck :wink:

 

[victorearose]

Thanks for the link Midwest,

I had found some similar things online and difficult child scored highly likely to have Autism Spectrum Disorders (ASD).

Just when I think I've got him figured out; something else comes along ... another layer of understanding him.

Thanks for the high fives Meow. I found out after a bad day yesterday at school that dear ex hadn't given difficult child his medications Sunday night. Gosh, poor guy.

This morning ... another incident of not wanting to get out of the van. This time it was at his dad's house though. I talked him out and into the house. Told him how proud I was and how great he was doing. He said "I don't feel like I'm doing great". I said "you are because you are making the right choice even though you are feeling bad. I am very proud of you"

:smile:

Does it ever get easier? It is so bittersweet right now.

Tressa

 

[TerryJ2]

Hi Tressa,
I understand your frustation. Sounds like you're doing a good job.
Ignore the family's stares and just keep doing what you're doing.
I like the positive affirmations you've given your difficult child, especially when you probably want to brain him when he doesn't get out of the van. It's hard to imagine what's going on inside his head.
I'm sending strength and fortitude for you all to hold out until the Asperger's evaluation.

LOL, MidwestMom! So true!

School screenings catch Major League Standout issues. The subtle things pass by.

 

[Star*]

Well I don't know if it gets easier OR if we just get so desperate that we actually start listening to advice of getting therapy and finding out how to effectively communicate with our children and the way these children think.

You sure have the lingo down = CHOICES - GOOD GOING MOM~!

Hugs
Star