Raising a Special Needs Child: The Trials and Triumphs

Here I go again, talking about my three marvelous girls. Anyone who reads my hubs regularly knows that they are the greatest joys of my life. Undoubtedly many of you may have gleaned that they are adopted, but what most of you won’t know is that they all have varying degrees of special needs. This hub is an honest look at the trials and triumphs of raising three special needs children who don’t quite fit into the round holes society says they should fit into.

Normal doesn’t exist

Normal. This word means nothing to me because I don’t think it actually exists. None of my children have ever fit into this category and I don't know a lot of people who do.

In the beginning our life with the girls was a series of tests and interviews to see where they fit on a spectrum where normal was the ideal. Needless to say the results never came back “normal.” Phrases like “developmentally delayed,” “severely learning disabled,” “lower percentile,” and “mental disability,” were in every report.

Each new battery of tests on my girls left me feeling sad, terrified and overwhelmed. It took me about a year to discover that the tests don’t matter, being “normal,” doesn’t matter. These reports were lifeless check marks in a box, they didn’t reflect the spirit and personality of my children. I stopped caring about the labels and the importance of being normal and started focusing on the importance of being happy.

Throwing away the timeline

One phrase that kept appearing again and again for one of my daughters was "developmentally delayed,” which was a fancy way of saying she was behind. Both physically and mentally she was years behind her peers. And she didn’t seem to be making much progress. This worried everyone. But after a year or two with our little girl we noticed significant progress, she was just setting a different pace for her milestones.

The best piece of advice I was ever given by one of her doctor’s was to throw away the timelines. As long as there was forward momentum and growth it was reason to celebrate.

And celebrate we did. When we adopted our little wonder she was four years old, 27lbs and knew two words and wasn’t out of diapers. Within three months of living with us she was potty trained and using 50 different words. Now at ten she has physically caught up to her peers and, despite a moderate speech and language impairment, she is able to communicate quite well. She is making steady progress every day on her own terms. Timelines be darned!

School can be a nightmare

Back to school is right around the corner and I would be lying if I said any of us were looking forward to it. Our experience has been that unless you fall within that mystical range of “normal,” school isn’t a great place to be. I can only speak from a Canadian perspective here, but the amount of cutbacks to our education system is appalling. All three of my daughters have profound learning disabilities and yet none qualify for an educational assistant. They receive some withdrawal assistance from the special education teacher that might equal two hours a week. This one teacher services 200 students. Only one of the three has access to a computer to help with their school work despite all of them qualifying to receive technical support in class. I could go on for days, but I won’t.

So with these dilemmas in mind we tend to look at school differently than most. My girls go for the social interaction and as a way of learning to be independent. We don’t worry so much about the homework anymore. Their teachers and I get to know each other pretty well by the end of the year and we just do the best we can together. My girls probably take more days off than most, but they’re happy and learning to make their way in the world without me by their side 24/7.

Making friends is not always easy

Ahh peer interaction, not easy at the best of times for kids and often even more difficult for kids with special needs. Children can be incredibly cruel and if you’re different you’re an easy target. My oldest can’t read a social que to save her life and the twins seem to have a policy that one does the talking while the other does the fighting. So it goes without saying that we have to work extra hard at making and maintaining friendships. Joining things like Girl Guides and team sports have helped a great deal and being part of a special needs support group for families has been a real God send. We are lucky enough to live in a small community full of wonderful and supportive people. Not everyone is that lucky.

Learning to reach out

In the beginning I wanted to do it all. I needed to be everything to my girls to make up for everything they had missed out early on in their lives. But by the end of our first year as a family I was dangerously close to burning out. My husband was fabulous during this time and ensured that I had time to myself when I needed it, but we needed more help than that. Once I stopped trying to be super woman I realized that help was out there, all I had to do was ask. The twins qualified for support from our local developmental services office which ranges from biweekly outings with a child and youth worker to free day camp programs for special needs kids in the summer. And our adoption agency was willing to provide counseling and extra funding to help with our oldest daughter. And our friends and family were and continue to be amazing with offers of support and childcare allowing us to recharge our batteries and reconnect with each other as partners. Now more than ever I believe it takes a village to raise a child and I am so thankful for the village of support that surrounds us.

Acceptance

I had a heartbreaking conversation with one of my daughters the other day where she asked me why she wasn’t normal, and why couldn’t she read and speak like all of her friends? Even writing this now I am teary eyed because it was such an honest question and I had no real answer for her. And I still don’t. We as a family are learning sometimes it is better not to focus on the why, but accept the “what is.”

In the end I had to say “I don’t know sweetie, but you are wonderful and fantastic and I am happy you are with me everyday.” In my heart I feel like we all have something to walk through and teach each other and this is just her path and my job is to walk it with her for as long as she needs me to.

Unexpected Gifts

Like any family we have our good days and our bad days, but on the whole I feel like raising children with special needs is not all that different from raising “normal,” children. Parenting is challenging and fulfilling no matter what the circumstances are. And what my daughters have taught me about bravery, acceptance and love just by living their day to day lives is more than I could have ever imagined. Getting to parent them has truly been a gift and I thank the Universe everyday for bringing us together.