Tag Archives: advocate

The conversation–how and when to tell your child about Autism; our version

How and when to tell your child he or she is different and special is a huge topic of debate. I see it all the time on facebook pages. I generally respond- with a very condensed version of how we handled the conversation. I thought I had blogged about it, but apparently not. So here it is…..
The Brick was older, as ASD diagnoses go, when he was diagnosed. At five he got an ADHD diagnosis, and then at seven got a behavioral/mental health diagnosis. It wasn’t until just after his eighth birthday, and a year of us not being fully satisfied with the diagnosis and services, that he got an ASD/Asperger diagnosis.
As an SLP who worked with lots of little ones with Autism and Asperger I couldn’t believe I had missed it, but you know what they say; “If you’ve met one child with Autism, you’ve met one child with Autism.” And—that’s a whole other post.
Since the Brick was older, he was very aware he was different than the other kids. He learned differently, behaved differently, played differently, was, and still is, simply different. He would ask ‘why’ and until we got the Asperger diagnosis, we didn’t really know how to answer him; we did our best though. As we waited for our evaluation appointment, and all through the testing process, we know he heard the words Autism and Asperger, but never asked what they meant.
When we received the diagnosis, I cried. Not in fear, or sorrow, but relief. We had a name, now we could face it with knowledge and strategy! Within a week or so of receiving the diagnosis, the Brick had a rough day and asked what was ‘wrong’ with him. I fought back the tears and sat down with him. Hubs sat with us and we started talking. It went something like this…….
“You know how everyone has things they are good at and not so good at? Some people are good at math or reading or sewing or building things but might not be as good at cooking or gardening or writing. Daddy is really good with wood working and fixing things, but mommy isn’t. Mommy can sign and grow vegetables, but daddy can’t. (Brother) is really good at math and reading, but can’t keep his room clean. We all are good at some things and not so good at others.
Sometimes when we aren’t good at something we need extra help. If you can’t see well, you get glasses. If your teeth aren’t lined up right you get braces. If someone isn’t very good at reading they may stay after school to get help. If someone isn’t very good at cooking, they could take a class. If someone has trouble walking they may go to physical therapy and may even need to use a walker or wheelchair. Mommy, daddy and (brother) all wear glasses or contacts; we need help seeing well. We see people at (speech) therapy that are in wheelchairs; they need help walking and getting around. (Brother) needs help with his behavior because of his ADHD so we work with him.
You are great at building with LEGOs. You have an amazing imagination. You are so creative and funny. You are so good at figuring out how to make something work. But, you aren’t as good at staying calm when you are mad or talking with kids to make friends. You know what though? There are actually a lot of people in the world that need help learning some of the same things you need help learning. It’s called Asperger Syndrome. It is named after the man who figured out that some people are really good and this group of things, but need help learning that group of things. His name is Hans Asperger. And, you fit into the group of people he discovered. So doctors will say you have Asperger Syndrome. All it means is that you are good at some things, but need help with other things. And, you know what else? Now that we know that you fit into this group of special people, we can help you better. We love you for who you are, no matter what you are good at or need help with and we will always do our best to help you and find other people to help you if we can’t. OK?”
A few days later we Googled ‘people with Asperger’ and compiled a list of people he would recognize. Since he was a bit older it was easier to find people. If they were actors or actresses we paired them with a movie he had seen. If they were musicians we paired them with a song. And we definitely mentioned Satoshi Tajiri, the developer of Pokemon.
That is how we had the conversation with our son. It worked well for us. I know it helps him to identify with a group of people who are, more or less, like he is, to know he isn’t the only one, to know he isn’t alone and that others have the same challenges. Over the years he has identified with the good that Asperger brings him. He, at times, hates it and wishes it away, but that won’t happen and he knows it and we work through it.
We believe in speaking honestly with our children, at an appropriate level. What and when you have the conversation with your child is up to you. We believe telling the Brick the reality early on, facing the elephant in the room, has helped him, and us.

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IEP from Hell–Gift from God

We had the Middle School Transition meeting today.  It was the most unproductive IEP meeting in the course of history, but also the most exciting and encouraging.  Let me explain….

We arrive and head in with the county school psychologist and ASD/behavior expert (who we know very well and has taken a personal interest in the Brick).  We go through the formalities..introductions, blah, blah, yada, yada.  Then, his current teacher (we shall call her The Goddess) speaks up about her concerns for middle school transition.  How, while he is functioning at grade level on regular curriculum materials, he needs support to be successful.  Not just academic support but behavioral support.  Keep in mind, we have chosen to do core academics (language arts, math, science and social studies through our districts virtual school program—we are so lucky to have this option—and have ‘electives’ and the social skills class done through ‘brick and mortar’ (the actual zone school).  Also bear in mind that until we get state standardized test scores (FACT) we will not know for sure which classes the Brick will be taking via the brick and mortar school. 

The Goddess continues describes the Brick and his learning style and challenges.  We move into classes—if he does not score appropriately on the state tests he will need to take remedial reading and/or math.  We will not get these scores until the last week (at the earliest) of June.  The reading specialist who is attending the meeting is concerned because the reading classes are strongly small group learning.  UGH!!  I, then question the legislation (I did my homework) and they bring in the VP.  He explains that we have ‘some leeway’ with math, but taking a reading class is a definite;  all 6th and 7th graders take a reading class of some sort.  OK, this is some progress.  We may be able to squeak in a real elective that the Brick elects to take. 

The Goddess asks about support facilitation in the remedial classes and electives the VP says they don’t offer it.  WHAT?!?!  Nope, no support facilitation except in language arts, math and science.   He goes on to say they have ‘never done it’ and they just don’t have ‘the staff for it.’   I understand the staffing and budget issues, I really do, but my kid needs support!  From previous experience and other parent’s stories I also know that getting a 1:1 in our district is all but impossible.  It generally takes a lawyer and a lawsuit as well.  Not that I won’t go there again, but it is not how I want to start our relationship with a new school.  The Goddess looks at me like ‘Oh, no.’ and ‘I’m sorry’ rolled into one.  I can tell by her expression that she is just as concerned as we are at this point.

I look at hubby and am telepathically sending him ‘We are going to home school!’ thoughts.  The Goddess goes on to explain that putting the Brick in this situation is setting him up for failure.  The team is at a loss.  Somehow we move to the behavior plan that the school psychologist updated last week.  It is amazing!!  She outlines every detail possible; how to interact with the brick, how to react to him for positive reinforcement, how to react to him for correcting behaviors.  She went so far as to put in all caps ‘DO NOT SUSPEND OR REMOVE FROM THE CLASSROOM.’  In the past, at the ‘Voldemort School’ (He attended a school for a short period that was a horrible placement for him.  We have, after 2 ½ years, gotten to the point we can drive past it without him becoming anxious.  We still, however, cannot name the school.  It has become ‘the school that shall not be named.’), he was removed from class and suspended almost weekly and it became reinforcing because he got to come home and not go to this hideous place that was mistreating him.

Anyway, the behavior plan is amazing.  If it is followed by his teachers we will be good to go.  But with no support facilitation there will only be the one teacher and we are still VERY concerned things will escalate before anyone can intervene.  Middle school is not a nice place.  It would only take one or two events and the Brick would become bully target number one.

About this time another lady walks in and the staffing specialist introduces her as the principal.  We move back to discussing the Brick’s learning style and challenges and the principal shares that all of the learning is done in small groups (for most kids this is a good thing) in all of the classes and that the school uses multimodal learning in all classes (also a good thing).  This means even the electives and remedial classes are group and cooperative learning based classes.  The Goddess speaks up again about her/our concerns for the Brick’s success in this type of setting with no support facilitation.  The principal said ‘Who said he wouldn’t get support facilitation?’  Someone on the team, I think it was the guidance counselor, explains what the VP told us.  The principal then says “It sounds like he needs a 1:1.  If he needs support our job is to get him support.”  You could have knocked me over with a feather.  I could not believe what I just heard.  She then asks (remember she came in half way through the meeting and knows very little about the Brick) ‘Does he have Asperger? Listening to you discuss your concerns and he sounds like another ESE student we had that we got a 1:1 for.’  Now I am thinking ‘Wow, there is even precedent, at this school, with this principal, for a 1:1.’

From here we are running out of time and have agreed that, until we get scores and know for sure what classes the Brick will be taking, we cannot complete the IEP.  With the new info from the principal the school staff needs to do some work and get a 1:1 for the three periods a day the Brick will be in school.  We agree to meet back, hopefully before summer, but possibly the week before school starts to finalize the IEP.  They let us take the draft so we could look it over.  Good thing because I have many things to add.

So in an hour and a half we accomplished nothing related to the IEP, transition into middle school, creating a schedule or defining supports.  We did get a principal who, very obviously, care for and advocates for her students.  If she follows through and is showing us her true dedication and commitment, I may call her Goddess #2.Image