Because it’s not just Asperger’s….

Because it’s not just Aspergers…

School always highlights the struggles of having a high functioning child. Daniel seems pretty normal. Maybe I am just saying that because I am his mother and around him all the time and so he seems normal to me. However, teachers, neighbors, etc. all act surprised when they find he has Aspergers.

When I sit down at the IEP, there seems a desire by everyone in the room to address each aspect of Daniel as a stand-alone issue.

He has Aspergers – OT, Social Skills, an understanding about meltdowns.

He has ADD – Scheduling, prompting, reminders

He has Dyslexia – Disidentic, primarily – We will work on phonics, decoding, and repetitious practicing.

He has processing issues

He has memory issues

He has Executive functioning struggles.

Slowly it begins to feel clinical. It feels like they don’t see Daniel just boxes to check off that may or may not translate into any real activity tomorrow.

Tomorrow always comes. The day-to-day reality of moving through the activities and tasks of the day hits hard. Daniel struggles. All the beautifully checked boxes don’t translate in the organic messiness of everyday life.

Daniel forgets his materials, leaves homework in his locker and starts to wear down with the constant effort. There are confrontations about why he didn’t remember for the 1,000th time. The teacher is frustrated. Daniel is frustrated. Tempers flare. Daniel’s temper usually flares first and brightest. He melts down, overwhelmed by the need to multi-task. His meltdowns are expressed as a rush of angry language. I get a note about Daniel being disrespectful in class. Daniel starts to lie to avoid the confrontations. I get notes about his lying. The tone of interaction with the school shifts from a child with needs to a child with behavioral issues. Accommodations fall by the wayside as they rush to address the glaring issue of Daniel’s attitude.

It isn’t just Asperger’s. It isn’t just Dyslexia. It isn’t just ADD. It isn’t just 14 year-old-boy. It is Daniel. He is hurting and struggling. He is anxious and depressed.

I talk to the teacher about what I see as an underlying issues. I talk about the fact that the accommodations are not being given consistently. The solutions for his executive functioning issues are not working. “Are they a good fit?” I ask.

The response is always the same. We can’t help Daniel if he is going to push us away by being so disrespectful and lying. I feel like we are always talking at cross-purposes. They implement what they know but when it doesn’t work, it is the child, not the process.

I stand in the middle. I understand that some of Daniel’s struggles are simply 14 year-old-boy. He would rather play video games than read. He wants to put off for tomorrow what he should do today. His coping mechanism are unacceptable.

However, I also know that the situation is aggravated by the fact that what he should do today is miserably difficult for him. He spends 7 hours a day trying to do what is most difficult for him and then being told he is failing. He walks the halls of a place that is still fairly new to him. He is a tall, skinny, red-head, with a severe over-bite and an awkward manner. He is made fun of by some of the kids, some of the girls in particular. No one notices the graphic novel he is writing. No one sees the involved story line he has created. He is only appreciated for his failures. I believe him when he says that his life is hell.

I am yelled at by my son and dismissed by the school.

Daniel’s reading progress is supposed to be tested weekly. The school has yet to test his reading once this year. I take him to The Reading Group once a week because it will take too long to get the school to comply.I am glad because I get additional insight from the therapist at The Reading Group.

I take him to his doctor to discuss any additional therapies that may help him. I take him to the Orthodontist.

I work overtime to re-write his IEP. There is no one out there that can tell a parent what to expect on an IEP. I am slowly building a network of information and help. My goal is to get him into a school that will give him adequate support, on the district’s dime. Those schools cost $40-$60K a year and as such are cost prohibitive for my family.

Most of all, I love Daniel. I have to believe that love and the intentions that come from that love will have some impact. I believe that the love I have for him will shield him from some of the consequences of the mistakes. Mistakes that I know I make as I stumble through the daily decisions of raising him. I tell him I love him. I love him as he screams at me. I love him when he shines in his unique way.

From that love, I hope. I hope that he will learn effective ways of interacting with the world he has been born into. I hope that he will find his way of showing the world his unique talents. I hope that something will click for him today. Most of all, I hope that there is truth in the saying, “Love covers a multitude of sins.”

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About aspergersmom

I am a 35 year old woman. I am the wife of an amazing man, who keeps me sane. As a recent California/Florida transplant to the midwest and the mother to a combined family of 6 children; 3 boys, 3 girls, my life is an adventure. I blog and raise our family with my best friend.
This entry was posted in A beautiful mind, Challenges, Dark moments, Dyslexia, ESE Public Awareness, His Story, IEP Process, School. Bookmark the permalink.

11 Responses to Because it’s not just Asperger’s….

  1. Heather says:

    Wow, just doing some research and stumbled across your blog. Thank you for sharing. I suppose Im a newbie to this. I knew one of my boys was very different from the rest, this past 6 months in particular have been challeging and his needs have become greater and his symptoms more noticable. It was Monday that the child psyc. said yes, you are right. I suppose now Im looking for parenting techniques, and looking at ways to help the school help my son.
    your blog is great, very honest and moving. im sure you’ll do Daniel proud as his mum.
    Heather x

    • aspergersmom says:

      Thank you very much! I think any parent, and particularly parents of children on the spectrum have regular moments of doubt in their ability and success. I am impressed by your persistance in getting a diagnosis and a way to better understand your son. My only advice is to love. Love really prompts the best in us as parents and as humans. All my best wishes for you on your journey with your son!

  2. Jennifer Lewis says:

    This blog and this entry in particular really moved me. As an Aspie/ADD Inattentive’s mom it is the story of my life, too. Your insight and love for your son are powerful and you inspire me.

  3. Melissa Sheppard says:

    I just came across your blog tonight because I was looking for someone who was going through the same thing as me. Thank you for sharing. It is exhausting sometimes but we fight on because they are our children.

    • aspergersmom says:

      Thank you! I am glad it struck a cord with you. It is always encouraging to me when I find another parent going through what I am going through. It is exhausting but we do it out of love.

  4. Natalie says:

    It is so unbelievable to me that you are writing about your son while describing my son to the letter. I am new at this. My son was just diagnosed. Every part of the struggle with school rings true and too close to home. I pulled him out, I am the middle you talked about. Would love to connect with you. This is the first blogg I have read…

    • aspergersmom says:

      Thank you! I take it as the greatest compliment when people feel I am describing their situation. I don’t have all the answers but the in my journey, my greatest discoveries have been made through the experiences of others. I hope to pay that forward. I would love to connect with you! Best of luck in your journey!

  5. Nina says:

    My son also has Aspergers and dyslexia. Through my journey with him I decided to start SeeMyIEP.com It has become my mission to try and put together as many IEP resources as I can to help other families. In florida we have McKay scholarship which allows you to take the money the school would get for your IEP and use it at a private school of your choice. I worked on my children’s IEPs for 5 years in the public school and now they are in private schools with the money from the scholarship.

    • aspergersmom says:

      Thank you! I will take a look at your website. I am always interested in people finding options for their children and the IEP process is so frustrating and confusing. Thank you!

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