My Autism Journey

Recently I have been reflective on my journey into the world of autism. I have an intense desire to help others like myself, who have children with special needs. When I see a parent in the waiting room at the therapy office whose child has yet to be diagnosed, I can see the pain, stress, sadness, the unknown in their eyes. I just want to reach out and let them know it will be okay. I see all of the signs in their child that I did not notice as unusual in my own – the flapping (Tyler’s happy dance), the toe walking and stimming. My heart breaks in a million pieces for them and it reminds me of all of the sadness I once had. I have such empathy. I have been there and know how devastating it is – the diagnosis of autism which changes your life forever.

What I would like to share with these parents after they have a diagnosis, what I wish someone would have shared with me:

1. It’s just a label! Do not let it be the thing that defines your child – he is so much more. When my friend Chris and I talk about how our lives have changed, she always reminds me, “I asked for a happy and healthy child, and that’s what I have.” She is so right! Your child is different, but not less.

2. Be strong. Your child needs you. Even when you want to drown in your own sorrow, you need to find a way to pick yourself up. See #3. When you do get down, or have a setback, focus on all of the things that your child CAN do.

3. It’s okay to be sad, this is NORMAL! When you come to the realization that your child has a disability, it is heartbreaking. Be sad, cry, and be angry! You need to go through the grief cycle to come to acceptance. But remember, it is a cycle and even when you get to acceptance, you may take a step or two back at times when your child regresses. The cycle is part of the journey, part of your life now. Embrace it and understand it. However, if the despair and sadness swallows you, seek help via a therapist. It is so important to have someone to talk to, someone you can share your grief with. Thank you Janet for helping me realize there is light at the end of the darkest tunnel.

4. Find a support group or make your own – for me this has been one of the best things I have ever done. I met some wonderful ladies during the diagnosis process and at Tyler’s school who were in different places in their journey. These ladies became my rock of support. Had it not been for Jenny, Chris, Brandi or Misty and our ladies nights at Chuy’s, I would have felt entirely alone.

5. Read everything out there. Become on expert on autism. Learn about the various therapies that can help your child. You are your child’s #1 advocate. You need to know what to do to help your child, in and out of school.

6. Make time for yourself. The stress of caring for someone with a disability can be unbearable at times. You need an outlet, something to unwind and de-stress. Mine are creative ones and they bring me so much joy – scrapbooking and jewelry making.

7. Make time for your spouse. Having a child with special needs is VERY hard on a marriage, especially when you may be at different places on the grief cycle. Find someone you trust to take care of your child and make time for a date.

8. Educate the family and all of the important people in your life. Get your family and friends on board so they can help you. This will empower you and your child and bring about a sense of understanding – why is it that your child does certain things, how to help avoid a meltdown, etc. Also, this will help educate others on autism and bring about awareness - family and friends will talk to others and share their attained knowledge.

9. NEVER give up hope. What works for one child may not work for yours. Be patient and keep trying. Potty training Tyler has been a torturous process. Many times I have wanted to throw in the towel, and then he surprises me. We are almost there (I think). We just need to get him interested in and comfortable pooping on the potty.

10. Normalcy is BORING. Embrace all of the quirks your child has and try to understand all of the fascinations – what is it about ceiling fans, doors and garages that is so enticing. This will help you better understand your child. I remember before Tyler was diagnosed, Geoff and I were lying in bed staring at the ceiling fan, mesmerized. It was soothing and beautiful, so I declared that we both must be autistic. Seriously, it helped us learn why it was so fascinating to our son.

These are just some insights that I wish a wise sage would have told me as I embarked on this journey. I hope they will help others find comfort as the deal with the newness of the diagnosis and what it all means. Tyler inspires me every day, to be a better person, to be the best I can be as a mother and educator. My life has changed tremendously in the two years since he was diagnosed, but there is one thing for sure, I would not change him for the world.