Skip to main content

Posts

A letter to my fellow special needs moms

Dear fellow mom of a special needs child,

I want you to know that when I met you,  there was something about you that made me want to become friends with you. It wasn't the fact that your kid also had a disability, it was that I sensed that there was so much more to you that I wanted to learn about. Your kid sharing the same diagnosis as mine, wasn't a factor in my choice.

But it seems lately, that that is the only thing you want to talk about.

As you know, every single one of my five children have a developmental disability. It is a hard and draining journey and it makes life really difficult most of the time. When I get to leave the house, the goal is to spend time with people who make me laugh and refresh my spirit so when I go home, I can be a better person. I don't want to talk about my kids, I don't want to talk about therapies, or school problems, I just want to be me. I want to shelve the problems I experience every day and just take a break.

The problem is, al…
Recent posts

Zipping and Buttoning in the new dimension

We just bought #1 jeans for the first time. At the age of 14, he just mastered how to zip and button pants. Yes, I am crying.

In the last few years, he has grown considerably. In just four years, he went from a very cute 10/12 to an adult extra large. His feet are a men's size 12. We have big people stock. 

I had the moment when I realized that he has outgrown most of his clothes, so I had to take him shopping. I let him select colors and types of clothes; hoodies, t-shirts, sweatpants, and then I selected a few pairs of jeans to try. He hasn't worn jeans since he was a toddler because once he had to zip and button them himself, he couldn't. He just didn't have the strength or dexterity in his hands to do it.

In the fitting room, I told him, "We're going to try on some jeans, just to see." He managed to button and zip each pair I handed him, ON HIS OWN. I was thrilled.  Once we found the right size, colors and cuts, we tired on outfits, and he liked his r…

An Autism sharing moment

Today, I was asked to participate on a panel at Towson University. The panel was designed to give the students in their autism studies classes a personal look at autism. These folks either already worked in education and were pursing a Masters degree or were training to work in special education.

These folks are the few, the brave, the "heart on the sleeve" teachers that are placing themselves in the valuable position of special education teacher. 

We were there to tell them about the thrills of autism ownership and give them advice on how to help/ connect with their students and their families. 

There were five of us on the panel with children of different ages and experiences. We were handpicked for various reasons and asked to share our stories. The similarities in our stories bind us as a community. 

Here's a few things we all have in common:

* We all noticed something was different, off, atypical of our children at an early age. Trust your gut.
*We all had to pay out of p…

Coming out of hiding

I was attending my high school reunion and a former classmate approached me. "Why aren't you writing the blog anymore? I want you to know how much you helped me when I needed it most. You need to start it again."

She actually liked the blog long before she realized I was the one writing it.

I explained to her, that sometimes life gets in the way.

Shortly after my last post,  I took a job as a personal assistant for a CEO. It was demanding and they became my sixth and most demanding child. The money was good, but the stress was greater. When your kids  beg you to quit because they miss spending time with you, well, that's the signal things need to change. So, I quit after my third year.

Three years ago, #1 started middle school and  two years ago, #2 entered middle school.
That journey is worthy of a post all it's own.

Add school, sports, scouts, music, gardening and other activities to the mix, and life became an overwhelmed fury; constantly running from place …

I'M NOT DOING IT!

When #1 got off the bus, he was agitated. Usually he does the same thing everyday; walk in the house, walk right to the family room to see what is going on, check out the kitchen for snacks on display, and then take off his shoes and backpack. While he does his rounds I ask him how his day went and he always replies "great", before he runs upstairs to get the iPad. 

Today during his rounds, he said to me, "I'm not performing with Mrs. Allen's class tomorrow. I'm not doing it."  And then he ran off. Well, ok then.

Volunteer appreciation day was scheduled for the next day at school and his special education teacher asked him to perform a song with the other kids. He has a great voice and can bust a serious move, so it seemed like a good idea. That was until I heard him, "MOM, I'M NOT DOING IT!"

I wondered what could be the issue. Was it because he was fully mainstreamed and didn't go into her class anymore? Was it that he didn't like th…

World Autism Awareness Month: A Time To Focus On Our Similarities.

Tomorrow, April 2, is World Autism Awareness day. I thought about all the things I could say about awareness and then I realized that the people who read this blog know all this stuff. With the latest release from the CDC about the number of children diagnosed with Autism now at 1:68, there will be a day that everyone will know or be related to someone with Autism. And unfortunately,  It is only when something affects everyone is when things will change.

I decided to re-share excerpts from my post: We're More alike than you think. The post was inspired by Willman Stillman and my self-observations. Everyday I look at my children and realize I have more Autistic qualities that I realized. I have also realized that it not necessarily a bad thing. Maybe melting and throwing myself on the ground if I can't find my keys may be over-doing it a bit, but many things are really a core part of me; like my ability to memorize information. It comes in handy on Black Friday for sure.

You asked me a question. Here's your answer.

When people meet me and learn that I have three children with Autism, they look dumbfounded. 
I really think it throws them into a confused daze, because many times, they look at me and ask, "How could that be so?" And, "What causes Autism?" Like somehow through ownership, I know why my three boys have different manifestations of Autism. 

The answer is, I don't. My guess is as good as anyone else's. 

I do have my hypothesis, though. 

I believe we all have certain characteristics that are passed down through genetic lines, like hair or eye color. But there are also less tangible characteristics that jump on the band wagon. We can all look at something in our children, ie: perfect pitch, introversion, ability in sports, science, math, music, quirkiness or some other abilities we possess and link it to our genetic line.  When we choose to reproduce, our offspring inherit whatever is mixed among the DNA. We have no control over it. 

With that said, most of us have h…