And again with the A word

I really don’t want to be sitting at my computer right now.

I want to be curled up watching Downton Abbey (slowly making my way through the series on Amazon. Very slowly, but I’m not in any rush.) and knitting. And eating chocolate cake. (The cake will be done in about 15 minutes.)

I don’t want to be doing CHADD stuff–replying to e-mails, being in contact with potential volunteers. There is suddenly a surge of stuff happening. Good stuff. But I can’t deal with it right now.

I feel like everything I knew about ADHD was wrong. I had thought we were dealing with ADHD with Picasso. I really thought he was going to be OK in a “typical” world.

And then … I saw him at the birthday party. He went to a classmate’s party over the weekend. It was clear he didn’t know what to do. The other kids were talking and playing together–and leaving him out. He got some weird looks. And he spent pretty much the whole time hanging on me. It was clear–he is the “weird kid.”

After that, plus some research I did this week, I was pretty much hoping for what happened today. That doesn’t make it any easier to hear, though.

Today was the school’s evaluation meeting. Picasso was given a diagnosis of autism. That label will stick with him, probably for the next twelve years of schooling. It will be teachers’ first impressions of him, even before they meet him in person.

I am angry–angry that this wasn’t caught before he was six; angry that we didn’t pursue more rigorous therapy before now.

I am lost. I know where to turn to get ADHD help. I don’t know where to get him help for autism, or even what help he needs. I want to do something for him, to help him learn to cope, but I am overwhelmed by the information about autism and the different therapies.

At the same time, I am relieved. I think that with this diagnosis, he will start getting more intensive therapy, and hopefully start having friends. His “weird kid” status will be explained. Yes, with a disability label, but I would rather people see his behavior as a disability rather than a choice.

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Picasso Update

So I had posted several weeks ago that the school thinks Picasso has autism.  More than fear, I was upset that the school had hidden that from me.

It turns out, I should have questioned further.  I am so conditioned to expect the worst of the school, it didn’t occur to me that the counselor was making a mistake.  When she was talking to me (keep in mind this meeting was not supposed to be about my son, so I didn’t expect her to look at my son’s file beforehand), she had me confused with another mother.  That other mother had been advocating for an autism diagnosis from the school.

It is such a relief to know that the school wasn’t hiding information from me.  They have been so good about getting services for Picasso, I had been upset with this turn of events.  I am glad to know they are wrong.

Now we are in the middle of evaluations at school, and everyone is on board with keeping an IEP for him.  The ironic thing is, one of the categories they are looking at is autism.  Although I really don’t think a doctor would say he has autism, the criteria for a category at school is different.

We’ll see what happens with the evaluations.  I hope he does qualify to have an IEP after this year.

I keep meaning to watch it, but here is a video about the link between Autism and ADHD.  These videos are worth watching (if you have the time).

What do I Need to Know to get an IEP? Part 3: Elements of an IEP

So, your child is going to get an IEP.  You are preparing for an IEP meeting: you need to know what will be discussed!  In Missouri, these are the components of an IEP:  (They are similar in most states, because the IEP is written according to state interpretation of federal guidelines.)

  • Present level of academic achievement and functional performance
    • The “present levels” tells everyone reading the IEP what your child’s strengths and weaknesses are, and what areas need improvement.  It is a picture of your child right now.  Teachers reading the IEP should get a good picture of your child from this.  The child will be compared at next year’s IEP to this picture of him at this IEP, and goals should be based on this picture.
    • There is a place for parental input in here.  Think about your child’s strengths and weaknesses and be ready to present them at the IEP meeting.  It may help to put them in writing: you won’t forget anything when you read it at the meeting, and the teacher preparing the written IEP can put what you write verbatim into the IEP.
  • Federal and State Requirements
    • This is basically a checklist of why a child needs an IEP and what will be in the IEP.
  • IEP Goals
    • This is what the teachers will be working on in your child’s IEP.
    • They should be specific, measurable, reasonable, achievable, and timely (SMART) goals.
  • Services
    • This is where the IEP states how much time your child will spend in special education, and who will be teaching (for example, general special education teacher or speech therapist, reading specialist, etc.)
    • Listen closely during this part of the meeting and take detailed notes, even if you don’t have anything to input.
  • Transportation as a Related Service
    • In this section, the IEP team discusses whether your child needs special transportation (for example, special bus service) to be able to attend school.
  • Regular Education Participation
    • This section discusses how much the child will participate in the regular education program.
    • The child should be in the “least restrictive environment” — should be with his non-IEP peers as much as possible.
    • Even if a child is in a special education setting most of the time, they can still be in regular education for times such as recess, lunch, gym, music class.
  • Placement Considerations and Decision
    • This section is a summary of what was discussed before, to state how much a child will be in the regular education classroom.  It includes a continuum of placements.  The IEP team must consider less restrictive environments before deciding to put a child in a special education environment.
  • Transition
    • If a child is 16 or older, this section is required. It may be included for younger children as well. This section discusses post-graduation plans and how the school will help him get there.

An IEP is a complex document, and a meeting has to address all of these elements!  As a parent, you are a member of your child’s IEP team.  I hope this will help you participate in the meeting!

 

What do I need to know to get an IEP? Part 1: Evaluations

IEP SchoolI’ve heard about an IEP and been told my child could benefit from one. But what is an IEP?  How do I get one for my child?

Your child is struggling in school, and as much as you try to help him, he keeps falling further behind.  Maybe the problem is grades.  Or maybe his grades are fine but his behavior is a problem.  Perhaps he is struggling socially.  At any rate, you sense that your child needs more help than he is getting at school. More

You are More than a Diagnosis

Receiving the DiagnosisI have friends who recently received devastating diagnoses.  One learned from the doctor that she has lupus.  Another received a school evaluation that stated her daughter has autism.

In the moment you receive that diagnosis, something changes.

It is hard to forget, at that moment, that you* are more than your diagnosis.

You are the same person who you were yesterday.  Anything you were capable of doing yesterday, you are capable of doing today.

Yes, there are more limits, more restrictions on what you can do.  They may be dietary or physical restrictions, but these restrictions do not change who you are.  It does not change your personality, the friend you are, the parent you are, the child he is.  It does not have the power to make you any less of a person.

The diagnosis does not define you.  It describes your health.  It is not you, merely a new way to describe something that, deep down, you knew already.

It is hard when the world recognizes what you have tried to deny for so long.  There is a loss.  Grieving is part of receiving the diagnosis.  But don’t let that grief turn into depression.  Don’t let that grief turn you into something that you otherwise are not.  Take the time you need to process what this diagnosis means for your life, because yes, the diagnosis is life-changing.  It is not a cold, where everything will be “normal” in a few days.  You are facing a new normal, new restrictions, new medical procedures.

But you are still you.  Don’t let go of that.

*  If you are reading this and a diagnosis is about a child, a parent, or someone else you love, please take liberties when reading this.  Your child is more than her diagnosis.  Your father is more than his diagnosis.  Language structure prevents me from encompassing everyone in this support, so I just type “you.”

What’s on my menu?

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