Happy Autism Awareness Month! Or for me, this is my life, every day…

I was down with a pretty nasty migraine, yesterday, so I missed World Autism Awareness Day and Light it Up Blue, but that’s okay.  In my more RSR2013logocolorlucid moments, I was with you all in spirit. I appreciate all of my friends who spoke out for me. And I have the rest of the month to make up for it, since April is Autism Awareness month. Our whole family will be running/walking to support our local autism center, The Autism Center of Tulsa in their big fund-raiser, the 7th annual Ready…Set…Run! 5K and Fun Run on April 27th.

We always turn this into a major event and get very creative with our team names. We love that our team has grown bigger every year, too! Last year, we were The Companions of Trevor (my son’s name) with a Dr. Who theme – complete with customized t-shirts for team members! This year, we’re going with a Walking Dead theme. Trevor has a favorite stuffed elephant named Fred, so we’re calling ourselves Trevor and the Walking Freds. Not too bad, eh? We’re inviting friends and family to come “zombie out” and be Walkers with us to help us raise money for a very worthy cause. If you feel like joining us or donating to our team, click here.

Some pics from last year’s walk:

Companions of Trevor 1Companions of Trevor 2Companions of Trevor 3Companions of Trevor 4

I’ve been told recently that I don’t talk much about what life is like with my son. I think sometimes it’s because I find it hard to explain what life with Trevor is like. I usually start by giving some lame generic definition of autism, explaining that it is a neurological disorder that affects 1 in 88 children, with deficits in social and communication skills, like that tells you anything about him. I guess I’m too close to it; autism has become so ingrained in my life that I can’t separate it. The adaptations I’ve made have become automatic. It affects every facet of my life – every decision I make, I have to think about how it will affect my son and his schedule. It’s like separating out your entire nervous system and explaining what it means to your body.

My son is a senior in high school this year. He still watches Sesame Street and The Wonder Pets. He reads at a third grade level. He needs supervision to do his daily chores and to complete activities of daily living. He has difficulty expressing his basic needs, especially when he’s angry, so he may become physically aggressive when frustrated. He can become fixated on one thought and ask you the same question over and over all day long. It can be exhausting just getting through a typical day, let alone a bad day. He is also very loving and caring. He hates to see anyone upset – even strangers, and especially babies. He doesn’t like it when anyone of us in the family are sad and always tries to cheer us up. I must get at least twenty hugs a day – not many mothers of teenagers can say the same.

There will be no going off to college next year for him. Instead, he will be working with some fantastic job coaches at A New Leaf and living at home. We will continue to help him to be as independent as possible. I know my son has a very different path set in front of him than his neurotypical peers and a very different time line for meeting certain goals – some goals may even be out of reach. But we won’t know unless we try. He has surprised us more than once on what he can do.

I love my friends to death, but sometimes all of their good news about their children’s bright futures is hard to stomach, especially when I’m just happy my son’s starting to socialize better and is no longer being combative with the school staff. My husband and I try to keep our perspective on him alone, his own personal timeline, but then there are those pivotal moments that sneak up on you – a child your child’s age does something that you know your child will never do. It can’t help but break your heart. We are human and we are allowed those moments of grief as much as we are allowed to find joy in those other moments when our children do something that for them is extraordinary that other parents would find mundane. There is a balance in there somewhere, we just have to find it.

It is very easy to feel overwhelmed and depressed about our son’s future, but he is happy, so to me, that is just wasted energy. Besides, my son has helped me appreciate life in a very unique way and I’m much more patient now than I ever thought I could be. If that’s not a clear picture of autism, maybe that’s helped you become more aware. For more information on all things autism-related, check out these helpful websites: Autism Speaks and Autism Society of America.

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8 thoughts on “Happy Autism Awareness Month! Or for me, this is my life, every day…

  1. Val,

    Thank you for sharing some insight regarding your personal experience with autism.
    Trevor is such a compassionate young man.
    He is able to give everyone a view of life that is often overlooked or taken for granted.
    Good luck to ” Trevor and the Walking Freds!”

  2. Valerie,

    You explain very well. You have always been a hero to me because I know the difficulties of life and that you work so hard to be positive. Trevor is a compassionate young man, who is extraordinarily lucky to have a mother, father and sister who care for him so well.

    And yes, I’m one of those friends who brag incessantly about our children. Just know that sometimes I do this because I too am working to focus on something positive in life. And when I do that, I also focus on you.

    1. wow. thanks so much, stephanie. i never think of myself that way. and of course, you should be proud of your children and their achievements. i know i am proud of mine as well. thanks for always being such a supportive friend.

  3. I agree that you’ve explained it wonderfully. I think unless it’s something you experience yourself, it’s very hard to imagine what difficulties present themselves, and also, what unexpected joys and lessons. Thank you so much for sharing some of your family and your son’s story, so others of us can understand more.

    Fantastic photos and I love the Companions theme you guys did! Best of luck to the Walking Freds!! (and I loved that photo of Trevor with Fred on FB 🙂

  4. First of all, Trevor and the Walking Freds is a fantastic team name! Second, thank you for sharing your experiences. I can’t imagine how hard it must be, but the fact that you have raised a son who is compassionate and happy is something many moms would dream of – autism or not – so hugs to you for being such an awesome mom.

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