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Disability Revelation

Real Words from a Real Parent of a Child with Special Needs

by Anonymous CLE Parent

Mother of a son with autism disabilityNobody wants to hear the word “disability” associated with their child, especially a young mother like myself at the time my son was diagnosed with Autism. My husband and I were well-educated, hard working, and just a normal, everyday couple. It’s only natural to give birth to children who are just like you, right? I did everything I was told to do during pregnancy. I read all the popular baby books, I ate a healthy diet, I exercised. My beautiful son was born and I was totally smitten. I couldn’t get enough of him. He was so beautiful that people used to tell me he needed to be in magazines.

I couldn’t wait for him to start talking because I knew he would be brilliant and my husband and I would be excellent parents. I remember seeing other children misbehave and knew for a fact it was because the parents were “doing it wrong”. So when I started seeing red flags with my son, I was shocked, but still thought Autism was impossible. He made eye contact, just not all the time. He talked, but communication was better at home than out of the home. He had major tantrums, but surely I wasn’t like other parents that couldn’t get their child to behave. (EYE ROLL!)

It’s a long way down from a high horse and I fell squarely on my butt.

My son was diagnosed with Autism at age 5. The hardest part about it was having to confess to friends and family members. My husband and I felt like total failures and we took the diagnosis personally. Not only that, but his younger brother was also diagnosed as being on the spectrum. This was years later, but still, I have 2 children with ASD.

I’m a very goal-oriented person, so when the psychologist gave me a list of recommendations for my son, I set out to complete every single one. We had a new schedule of therapies and a special classroom for him to start Pre-K. Those were some turbulent and exhausting times. I had 2 boys, only 18 months apart in age. The oldest was diagnosed with Autism. The youngest was not diagnosed yet, but was an absolute handful, to say the least. My husband was doing his residency in Urology, and I had a photography business that paid the bills. My son was thrown out of at least 3 different daycares for behavior problems. I hired nannies that we couldn’t really afford, and none stayed for very long. I have literally been at the school having a meeting about one boy and was then called into another impromptu meeting about the other boy.

How different life is.

Most people are sympathetic toward families with special needs children. However, they truly don’t think about how different life is with a special needs child. Everything is harder and takes longer. Forms for school take forever to fill out with the explanations of medications and behavioral issues. There are countless meetings with the schools and therapists. There are extra doctors visits that the typical child doesn’t have to deal with. Then there are the hours of research you put in as a parent to find that magical cure for your child. There are special diets, so lunches have to be packed, trick or treating has to be manipulated, and birthday parties have 2 different cakes. Medications have to be constantly tweaked and changed. You must be available at all times to get to the school and take your child home when the teachers don’t want to deal with him anymore. Everything has to be scheduled so that Mother of children with disability on the spectrumthere are no surprises. Even missing a turn while driving in the car could cause a major tantrum. Then there is the emotional drain of having a child that no one really likes. Being told at every turn how bad he is, what a problem he is, what he did to someone else. It starts to be truly painful to hear “normal” stories about other people’s children.

I will say this.

I wouldn’t change my life or my children. I’m stronger, tougher, and certainly more humble than I was before they entered the world. I have a daughter who is miraculously not on the spectrum. I’m a better mother to her and don’t take a single second for granted because of where I’ve been. I refuse to complain about silly things that don’t matter. I’m blessed to have boys that both have unique talents. They both are blessed to not care what anybody thinks about them! And a word of advice on my boys, in the event that you ever meet them: if you DON’T want an honest answer, DO NOT ASK!

Newsletter Articles – November 2016

The r-word

Retard. There, I said it. Now let’s spread the word to end the word. Why, you may ask? This word is hurtful and disrespectful to many and promotes exclusivity. So how do we do this? Let’s look at a simple three-step process.

CLE Couple

While CLE is certainly not in the business of matchmaking, our program creates and fosters a community for our students that is unlike any other. Many powerful and long-lasting connections can develop from peer groups, to best friends, and yes, sometimes even romantic relationships develop. In this article Dr. Galen Chun follows up with a couple that met at CLE, and whose relationship continues strong, long after the program.

Drew and his mom Deborah

For most of my son’s life he’s been misunderstood, bullied, afraid, excluded or summarily dismissed. No wonder I was never far away with a needed explanation, interpretation, apology, you name it.

But on Sunday, August 9, 2015 that job of mine ended. I was replaced in that capacity by much more capable hands at College Living Experience—although, of course, no one is replacing me as my son’s mom. Whew.

To get some perspective on where we’ve been, let’s take a look at a few of my diary entries from last year.

Neurodiversity - the idea that variations in cognition are natural, and an example of human diversity

When I first learned the word neurodiversity, in a disability studies class, it transformed the way I saw the world. Neurodiversity is the idea that variations in cognition are natural, and an example of human diversity. The neurodiversity movement calls on all of us to participate in making our society more accessible to people with all sorts of brains – people with Autism, learning disabilities, ADHD, Tourette’s, psychiatric disabilities, and so on. It also calls for foregrounding the experiences, perspectives and leadership of neurodiverse people in organizations dedicated to disability rights.

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This has been a special needs program update from College Living Experience | CLE | Choose Your Future. You may also click here to read the original article on the main program website.