Saturday, May 21, 2011

Alone no more.

Three and a half years ago, I was alone. Alone with my anxiety and fear, alone with unanswered questions, alone with what to do next.

Countless hours of surfing the Internet for others, others like me, mothers like me. I knew if I stayed alone with all of this, I wouldn't survive. I found one "special needs parenting" chat group that proved to be quite worthless.
I called local organizations that advocate for kids with disabilities, there was a support group for Down Syndrome parents, quite a few groups for parents with kids on the Autism spectrum, another for ADHD.
I called the local chapter for epilepsy, nothing, except a group for adults that had epilepsy.
Alone I was.
I asked Dermot's therapists if they knew of any place for someone like me, puzzled looks were my answer most of the time.
I asked Dermot's teacher, she promised to connect me, if she found a match.
I kept going. Talking to anyone I knew with "special kids".
I met with my friend's sister who had a little boy with down syndrome. We talked about being different and I observed her how she didn't seem to falling apart at the seams, as I thought I might at any minute. That gave me a glimmer of hope.
I kept going. I met with a friend who has an adult daughter with intellectual disabilities, her daughter lived happily in a group home and kept a job and seems to enjoy her life. Hope grew again.
I kept going. I received a phone call months later from a mother of three, she had a son two weeks younger than Dermot. He had seizures too. I was strangely excited. Someone like me, I thought.
I kept going. That fall, we both ended up attending a newly resurrected parent group that Dermot's school facilitated. The only requirement for this group was your kid had to be enrolled at the school.

This was the beginning of the end for my isolation. In this group I met a woman whose only son had autism, a single mom whose only son was fighting a severe seizure disorder, a mother of three boys, her twins were affected by serious medical issues and cerebral palsy, a single mother of four who was ten years my junior, dealing with a very strong boy that had behavioral disorders, a mother of eight fighting for her youngest daughter against a rare genetic disease. We were people who would not normally mix, pulled together by a common affliction. Pain. A desperate need to connect.

We formed a mini community, sharing resources and therapists, opinions and feelings, dinners and nights out.
We meet twice a month and get together with "alumni" as time permits. Always knowing we have a connection.

My community also grew thanks to the Internet and the wealth of special needs bloggers like myself. First there was Special Needs Mama and her: The Mother at the Swings, then Fawn from Whitehorse, and Samatha's Mom, Following Elias, Zach's mom and Jacob's mom Maria. Facebook friends like Deborah and Tracy whom I've never met, but helped me tremendously.

Then there are the moms I think of as "typical" helping me thru a feeding tube crisis. Another sharing her experience with the death of her son. A handful of other "typical" moms that would bring me dinner in the hospital or watch my other children while I tended to a sick little Dermot.

All this time I'm quite aware there will be more of us, unfortunately. More children getting assessed, more children in the hospital, more moms getting their lives turned completely upside down and never to return to the version of normal they knew before.

I don't want them to be alone, I don't want them to think there's something wrong with their kids or themselves as mothers. I want them to know there are moms out there wanting to help, wanting to give them a hug, or some tough advice or hold their hand through a tough doctors appointment or IEP meeting.

I am alone no more, you don't have to be either.

Monday, May 2, 2011


I just bought a wheelchair ramp. And I cried. I looked at this ramp several times online. I looked at my friend's ramp that's just like it. I looked at this ramp at a mobility store. It's heavy, 28 pounds heavy. I'll have to slide it in and out of my van, attach it to my bumper, unfold it, roll Dermot's wheelchair down it, then fold it back up and slide it back inside. I'll do this at least four times a day.

I had to decide when I'd had enough, I had to decide when my back had had enough, and most alarmingly I had to decide when my bladder had had enough. Lifting a 68 pound awkward wheelchair up into my van while pressing it up against my bladder to get some leverage is unpleasant.

There's hurdles in this journey as a special needs mom and I've discovered they come and go. Some are easy and I don't give them much thought and some I have to sit with for a while, let them fester or grow. Then I overcome. The ramp means more people will look, the ramp means another step to just get Dermot out of the car. And lastly, the ramp means freedom. Now I will take him to Target or the library or the lake for a walk. All the places moms drag their kids everyday. He can come now and I can bring him.

So yes, I cried. I'll get over it and I'll enjoy just a little more freedom with me and D.