by Pat on Jan 8, 2009 at 6:15 PM
Filed in Autism and Education | Autism and Stress | Autism Family Facts | Parenting Autistic Children | Stories from Readers
I am a mom of 2 children on the autism spectrum. They are both nonverbal, ages 7 and 10. It's not only a privilege to be a parent, but it's a privilege to be parenting two children on the spectrum. Autism is not who they are, only a part. They are fun, loving, smart, loyal, dedicated, compassionate, helpful, and considerate to name a few.
Parenting and advocating for my children is a 24/7 job that we do not get paid for. We are a wearer of many hats; Mom, educator (general and special ed.), therapist (speech, ot, pt, sensory specialist, music therapist), behavior and autism specialist, file clerk, lawyer, social worker, financial analyst, etc. I am their voice.
My goal for them is to be comfortable in their own skin. Autism IS OK. They have a right to have this different ability. They have a right to take in the environment and learn differently.
They do not suffer from autism. I do. I worry about them all the time. I am the one that agonizes over them. I am the one that feels out of control when they are not in my care. I suffer from autism because I fear the unknown and I fear not knowing enough. I fear doing the wrong thing and I fear being overly protective, too.
My sons have shown me what so many people take for granted. They show me what's important and what isn't. They show me what it means to be a human being and what it means to be patient. They have shown me to "lighten" up and find humor in our lives and not be so serious all the time. They have shown me to slown down and realize that they are children first and the rest will fall into place when they are ready to allow it. Lastly, they showed me that they feel the same way, but show it in different ways and honest people do matter.
I'm not saying it's easy by any stretch, but enjoy their uniqueness and the time they or you have on this earth. I often reflect and feel that their world makes more sense than our judgemental world.
It is my duty as their mother to educate myself on their unique ability. It is my obligation that I took when I decided to become a parent to be the best I can be for my children. It is my obligation to be proactive in every aspect of their lives and educate people about them, not just ASD. It is my obligation not to sit back to hem-haw of what could have been or what should have been. It is my obligation to support their educators in school to support my children. Schools do not necessarily have the tools or equipment in hand to educate my children.
We have gone several thousand dollars into debt from purchasing sensory equipment, laminators, software programs, computers, printers/faxes, paper, velcro to name a few to get our sons needs met! I would do it all over again in an instant. Without all these things, life would have been unbearable for all of us. Sure, there are grants out there, but how long do we need to wait to find out if we got accepted before we found relief? My sons can't wait to learn how to communicate, they can't wait to have their sensory system calm, we needed relief NOW!
Creating PECS systems is a full time job itself. You are talking about being the master mind of all their communication needs for both in the home, community and school. Don't forget when they grow, so does their vocabulary! It's not just about their communication system, but what about modifying their school work in a way that they understand it? I use popular software programs to modify their school work so they can be included, too. I feel that it's not all about the ABA (Applied Behavioral Analysis). I like them to have access to the general education school work, too. It may not look like their peers work, but they are doing the same thing in a different way. In a way they understand it and in a way that interests them.
So, when you come across a person who happens to have autism, consider it a privilege. Find the gifts that they have. Do not give up on our kids. They are smarter than they are given credit for sometimes. I feel our kids with ASD can be the most misunderstood population.
I love my children, I am lucky to be a stay at home mom to advocate for them. I am thankful to have a husband to works 7 days per week so I can do so.
Thank you for reading,
Krissy