How did life for the family change after being diagnosed?
So many times we are “that family.” You know the one with the kids who look out of control and the parents who look completely overwhelmed. The other week in the mall play place, we were definitely the family with two screaming kids, mom in tears, dad completely frustrated, and an older sister begging to stay and play for just five more minutes. People gave us dirty looks like, “What the heck is their problem?” while we carry them out one by one kicking and screaming. Yep. That’s us.
One of the hardest things about having a child on the spectrum is not knowing what will happen day to day. Birthday parties, play dates, cookouts, catching a movie, and family outings are part of the joy of family life. Most times the thought of these things causes me anxiety because I’m so unsure of how these events will affect our son’s day. He wants to participate and have fun, but most times it just ends up being too much stimulation and he either has a meltdown at the event or he holds himself together just long enough to make it back home where he completely loses it. I miss being able to look forward to fun. I’m always on guard. Always ready for the worst to happen. Imagine feeling like you are walking through a minefield every day of your life. That’s how I feel most days. Tread lightly.
So life for our family includes a heavily calculated schedule, and everyone has to pitch in to make sure we get through the day unscathed. Some days it works out. Some days we come out with a few battle wounds (literally). It’s part of our lives with autism.
Outside of our son’s needs, I am now the bad friend. The one who says she will call and doesn’t. The one who forgets birthdays and anniversaries (who is thankful for those handy dandy Facebook notifications – THIS GIRL). The one who cancels on dinner plans at the last minute. Totally me, and I hate it. But when you have a child with special needs, some days you honestly can’t fathom making space in your world for anyone not directly involved in our situation. I literally don’t have the emotional, physical or mental space to extend myself. I know that sounds horrible, but it’s the truth. You don’t want to be “Debbie Downer” when they ask how you are doing and the answer is horrible. You know that all you will do is talk about your children. You will anxiously worry about your overwhelmed spouse and cut plans short to return home to put out fires. So rather than all of that, you become the bad friend.
Life is not the same.
How are siblings effected? Do they also have special needs? How do you balance care and attention?
SPD and ASD definitely have genetic ties. My husband and I joke that our son is us on steroids. He takes all of our little quirks and magnifies them times 100. We highly suspect that my DNA, plus his DNA was BOUND to just create pure AWESOMENESS, as we are pretty sure our younger son more than likely has SPD as well and may also be on the spectrum. After homeschooling for nearly two years and being a certified educator, I also strongly believe that our daughter probably has ADD. Clearly we make superheroes over here. It’s what we do!
I truly believe that siblings are the unsung heroes of autism. My daughter is just six, but she has such a beautiful and loving spirit. Even though we try to minimize the effects, she has to sacrifice so much for the health of her bothers. She has to leave events she’s been looking forward to for weeks early because they are over it. She has to deal with parents who are over stretched with patience that is running thin. I feel for her. And I try to let her know every single day how much I appreciate her. That I see her. And that SHE is a valued member of our family.
It’s a delicate balance. I don’t want to completely shelter her from our “life with autism.” I can’t, and more important than that, I believe that God put our little family together for a reason.
How can other parents best support the parents of and children who have special needs?
Other parents can be a support to families effected by SPD and autism by teaching their children to be accepting of differences and inclusive of other children who may seem a bit different than themselves. Children with special needs want to be included just like any other child. One of the most heartbreaking things to watch is your child try with all their might to be social and they get rejected. I’ve seen it happen more times than I would like to admit. Teach your child to be an ally. I’m teaching mine to celebrate his differences and the differences of those around him. Teach your children to do the same.
And for the parents of special needs children, be a safe space. Parents of special needs children do NOT have it all together. We are often told that we are super heroes, but the truth is many days we feel anything but super and much less than a hero. This life is riddled with anxiety, depression, feelings of inadequacy, failure, and many times the ending of once happy marriages. This life is HARD. I remind myself daily that God is in control and that he doesn’t make mistakes. And it’s not that I feel like there is anything “wrong” with my son, but I feel completely ill equipped at being his mother. I’m forever thankful for my safe circle of loved ones that I can be completely honest with. I can take off the Wonder Woman cape, ugly cry, and wallow as long as necessary. And when I’m done, they will say a prayer, tell me to get myself together, help me tie the cape back on and encourage me to keep going. They have literally saved my life more times than they know.
This is my life as the mom of an amazingly special boy with autism. Incredibly flawed, incredibly stressful… but incredibly BLESSED. I know that God did not bring me here to keep our journey to myself. If you are reading this and see yourself, or your child, know that you are not alone. We are praying and advocating for you daily. Your journey has a purpose. Just keep going.