There are a lot of things that change when you have four child. Many that didn’t surprise me. Your house suddenly feels a lot smaller for one and it’s nearly impossible to find a quiet space. Your favorite car or truck that you have loved no longer fits two car seats and 4 other people and you ultimately have to decide if you are minivan person or not. I am not. I am fighting it. You can no longer fit at the kitchen island for meals. Someone or two or…
My message to the mama who just heard autism for the first time…. Your child has just been diagnosed with autism. Maybe it came as a shock. Maybe not. Maybe like me you already had an idea that something was going on. But you still felt the sting when the words were said out loud. There are so many things I want to tell you. So many important things that I feel you should know. But right now, if you were anything like I was 9 years ago, your head…
What does autism look like? It looks like mismatched slippers every day. It looks like refusal to comply. It looks like obsession over socks being just right. It looks like dance parties at home but refusing to dance at dance class. It looks like holding her bladder until she is in a ‘safe space’ where she can finally find relief. It looks like fighting sleep even though she is past the depths of tiredness. It looks like food being cut into bite-sized pieces and discarding certain pieces because they don’t…
Yesterday, our family went tubing. I watched my three year old daughter bravely climb in. Then my five year son and 11 year old son. They squealed with joy and high fived and yelled for dad to go faster. I couldn’t believe it. I commented how fearless kids can be. As we circled the boat, my 13 year old son sat next to me. He watched with bright and curious eyes. He isn’t one to join in. Or always willingly try. I looked from him to his siblings. And then…
I can’t say “I hate autism” anymore. I haven’t said it much, but I have. There are moments when I desperately want to be angry at autism—during a colossal public meltdown, the relentless screaming in the car, when things get broken at home, or worse, when my son can’t cope and it seems like something else has a hold on him and won’t let go. I want to be angry at something. I want to blame this invisible force that seems to inhabit our lives and shadows us everywhere. There…
Hope. Gosh I hear that word a lot. Have hope. Never give up hope. All we can do is hope. If we give up hope, than what do we have left. In the world of special needs, hope is a hot topic. Hope and I have had a rocky relationship over the last few years. For years I hoped nothing was wrong with my baby. Then I hoped my toddler would catch up. And then I hoped that it was ‘just’ a speech delay. Then I hoped it wasn’t autism.…
Take my hand and follow me, Let me show you exactly what I see. The colors all around me are beautiful and white, It’s a blessing and a curse to see light this bright. The background noise that you instantly ignore Screams inside my head the second you open the door. There is no mute or volume down, It’s a never-ending fight of swim or drown. Food can be scary if it is any color but beige, It’s a sensory issue that can’t simply be fixed with age. It’s hard…
I was helping my autistic daughter navigate some personal medical issues that she had earlier today. I helped her through the hard parts and just went about my day. As I sit here this evening, thinking about our day, this wave of sadness and fear hits me extremely hard. When I am no longer here? Who will make sure these situations are dealt with in a way that respects and allows her dignity? I have dedicated the last fifteen years of my life to caring for this beautiful girl. I…
I’m scared a lot as a mom to a child with a disability. I don’t say it often. But I’m terrified. I’m terrified when he’s away from me. I’m terrified someone will hurt him. Or misunderstand him. I’m terrified of the future. I’m terrified of dying. I hold my breath when he is away from me. And I do my very best to manage the fears. Cooper is 13 years old. His diagnosis is severe nonverbal autism. I often say he has the kind of autism the world doesn’t understand.…
The reality of being a sibling of a child who has special needs, unique needs, disabilities…however you prefer to say it. The reality of Siblings of children with special needs is hard for most people to grasp if they have not been in that situation. Last summer, we dropped my oldest son off for camp and it was just myself, my husband, and the two girls for 3 days straight! This was a first for such an extended period of time. Yes, he has stayed with Grandpa while we took…
