On January 24, 2015, Mike and I welcomed the most beautiful baby boy into the world, Blaine Michael Roberts.
He was absolutely perfect. He instantly stole not only our hearts but those of his half-sisters, Mckenzie and Maxley. At that point, the unknown aspects of his future were so exciting as we imagined everything from T-ball to college (UK of course). The possibilities were endless and our family was complete.
So many things have changed since that day but yet so much remains the same. Blaine is still the most precious thing I’ve ever laid my eyes on. His smile and laugh have always had a way of making everything better and he is still loved beyond words. Our picture for his future, however, is much different. We began noticing subtle differences when he was around 6 months old and he received an official Autism diagnosis at the age of 2.
He is now 5 and remains nonverbal and is extremely behind in peers in all areas of development. The excitement we once had turned into fear. This time, the unknown about his future included questions like “will he ever talk?” “will he ever be independent?” and the hardest one for me “what will happen to him when we’re gone?”.
I’m well aware that every parent worries about their child but these are not the questions that I ever wanted to be asking. We have experienced every emotion possible, most to the extreme, but our hope has remained constant. Even before the diagnosis, we have been constantly seeking answers and guidance, eager to start any and all treatments.
Blaine is currently involved in speech therapy, both at school and home, occupational therapy, ABA therapy and on the waiting list for feeding therapy. He has also seen a number of specialists including a neurologist, psychiatrist, gastroenterologist, chiropractors and wellness doctors. We are determined to explore every possible option in order for Blaine to have the best odds.
The list could go on and on but these are some of my hopes for Blaine.
1. To say “Mama”. This one is for more selfish reasons but I’m dying to hear that word.
2. To have interests. My husband and I both grew up playing sports and we have enjoyed every minute of watching the girls with their activities. I hope that Blaine will experience the thrill and excitement of being truly passionate about something. And no matter what it is, I want to be the annoying, over-the-top Mom cheering him on from the sidelines.
3. To understand special occasions, birthdays, and holidays. Don’t get me wrong, Blaine definitely knows how to unwrap presents, but he doesn’t understand the magic of Christmas or the significance of birthdays.
4. To have friends. No explanation needed.
5. To be understood. I often find myself speaking for Blaine and trying my best to enter his world. I know it’s just as frustrating for him trying to communicate. I desperately hope that someday he will be able to share what he is thinking and feeling. I also want others to understand how truly amazing and smart he is instead of seeing just a diagnosis.
6. To be able to relax. This one is for all of us. Blaine is constantly on the go and does not comprehend danger. This forces us to be hypervigilant at all times simply for his protection. What I wouldn’t give for us all to be able to sit and enjoy a movie, ballgame or social get-togethers. Sleep would be an added bonus.
Although Autism has brought doubt, fear, and extreme exhaustion, it has also blessed us with so many life lessons.
1. Appreciation for my husband. Mike and I often joke about making the perfect team but it couldn’t be more true. I have a level of respect and appreciation for him that I’m not sure I would be able to grasp if it weren’t for our struggles.
2. It is okay to feel a whirlwind of emotions. As a therapist, I have been well aware of this one when it comes to other people. I’ve built my life trying to be a strong, positive person in order to support others. This has absolutely forced me to practice what I preach. I now give myself permission to feel both positives and negatives. I feel guilty for the impact this has on his sisters.
We have made so many adjustments and it sometimes feels that Autism takes over our lives. (They’ve both been rock stars by the way and never complain). I feel jealous when I see other children doing things that Blaine can’t and then I again feel guilty for feeling jealous. Just to be clear, I would never wish to take away the joys of another child or parent, I just wish my child could experience the same. I also feel frustrated, anxious, thankful and content. But most of all, I feel unconditional love. Even through his meltdowns and sleepless nights, I love that little boy more that words can express.
3. The ability to notice and appreciate the small wins. To an outsider, we would appear crazy for our level of excitement over little things to which most parents would probably pay very little attention. When he appears to grasp a new concept like blowing kisses, or tries a new food, I’ll admit we have a mini celebration.
4. It really does take a village, and this doesn’t just apply to Autism. Everyone needs support. Blaine has an amazing group of people on his side. I really have no clue where we would be if it weren’t for the support we get from family and friends.
My intention here is not to elicit pity. Instead, my hopes are to spread the phrase “it takes a village” and encourage everyone take time to listen be there for each other. Everyone has a story; some I can’t imagine surviving but I want to hear them all with a promise of willingness to do anything I can to offer support with absolutely no judgement. We are in this together. We are a village.