Nathan’s story began the evening of April 24th, 2009, his birthday shared with his twin brother, Matthew. The day that my most important and much dreamed-about title was given to me: the title of Mom. It was not easy getting there, and at some points I never thought it would happen, but it did and I was doubly blessed.
Infancy and the newborn period were pretty uneventful. They both developed and grew as would be expected. It was not until Nathan was getting close to 18 months and not walking that I began to notice some delays. Then there came a point that I began to notice his speech was delayed and that he actually stopped saying words he previously said.
We had him evaluated and he began speech therapy at that point. Further behaviors, such as rocking, started to put autism in the back of my mind. But then I would think, he loves hugs, he is affectionate, he may not seek out other children but he is not totally anti-social. In addition I had many telling me not to worry about it, that one day he would grow out of it and start talking. That day did not come.
I went to my pediatrician who at first said the same. He went right over to her in the exam room and snuggled up to her, but what she didn’t realize at that time is that he didn’t do that for socialization; he did it because of the computer she had. He loves computers! As we talked, she did recommend an evaluation. Since it was an 18-month wait for the pediatric developmentalist, we were referred to a pediatric neurologist. There is where we heard, “Yes, your son is on the spectrum.” Once we saw the developmentalist, he was officially diagnosed with moderate autism.
Sometimes I think, would I want Nathan without autism? Most days I say this is who he is, and I really would not change him. He is such a love; he sees no evil, nor does he have one mean bone in his body. At the same time, I know bad things are out there and he might not recognize them when they’re in front of him. This is what keeps me up at night. The bullies, the ones who don’t understand autism or special needs children. I worry about them. But he has an amazing support system, from his therapists and teachers down to the kids who love him at school, and I know they will protect him.
I struggle with his anxiety and at times it is more than he or I can take. There are some days both of us are in tears. Family outings are very difficult because we never know if he will be able to tolerate it. But we have been blessed. Many families have to take out second mortgages on their house, have to move, or otherwise go into incredible debt to get their children the therapies they need. We have not had to do that. Nathan has gotten services since he was 2.
Autism is a journey, and I don’t know what the future holds for Nathan. What I do know is that he has a team and a family that will help him to grow and develop into the person he will become. What I do know is that he is very intelligent and he amazes his teachers and therapists every day. What I do know is that all of us want to unlock what is in his mind that’s left unsaid.
What I do know is that Nathan is a gentle spirit, and he can be a mischievous little boy who likes to aggravate his brother with a laugh.
We are a family. We welcome the ups and the downs as a family. We have our good days and we have our bad days as any family. Are there trying times? Yes there are, like the struggle of getting Nathan to poop on the potty and getting him out of pull-ups.
Are there joys? More than I can even list! They are bountiful, such as hearing Nathan trying to say a new word, letter or number. Seeing him play with other children at daycare. Seeing Matthew interact with other special needs children with love. Getting a great, big hug and kiss from Nathan.
In the end, we are a family living with autism. Would I wish for Nathan to be different and not have autism? Honestly, I don’t think I would.
He is a beautiful child. He is a beautiful spirit. He is such a gentle soul. This is Nathan and I accept him for who he is and who he will become. And I am so incredibly proud to have him as my son.
The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability or disease? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.
Want to end the stigma around disability? Like us on Facebook.
And sign up for what we hope will be your favorite thing to read at night.