A note from Marcia…
I just found Kate’s blog. Kate is a member of our A-Club and her son Cooper is on the spectrum. She tells its like it is and writes about what all of us feel! She gets it! Thank you, Kate, for sharing your private thoughts and experiences. It helps, because this is the club that none of us asked to join. Sign up for Kate’s blog at www.findcoopersvoice.com.
And now here’s Cooper’s mom…Kate
I often think of my son’s autism as a journey. A journey with many, many steep mountains. And holes and cliffs. And of course it’s slippery. The hills have jagged rocks and most of the time I feel like I am hanging on for dear life. There is no safety harness or map. I typically don’t know if I am even going in the right direction. And perhaps at times I am going backwards.
It’s just me against this damn mountain. And it feels like there is more bad weather than good. I spend days doubting myself. The nights are worse. I doubt my progress. I doubt if I will make it to the finish line. And even worse, most days I wonder if there even is a finish line.
Then something amazing will happen. A moment so magical it’s hard to even put it into words. The sun will come out. And I will get the strength to keep going. To keep fighting the fight. That is autism to me.
It’s a life of ups and downs.
The journey is long my friends and oh, so unique. My journey is different than yours.
I would say that right now I am in the middle of my autism journey. I am through most of the hard stuff. I am past the diagnosis. I am involved in the school district. We have our IEP. I am getting county and state services. Fingers crossed when I say this but I think that maybe, just maybe, I am past the survival part. The fight or flight part.
I am three years into a diagnosis. I am settling in. My house is Cooper proof. Everyone in my life knows I have an autistic son. I am headed towards acceptance.
There are times when I can almost breathe. I joined a gym. I feel like I am becoming human again. I am no longer invisible. I blog about my journey. I am helping other parents. And I love that part.
These are all great things.
In saying all that I often think about my journey. And the mistakes I made.
Maybe ‘mistakes’ is too harsh. But I surely stumbled a lot. And Cooper’s dad and I did it mostly by ourselves for the first 5 years. And in doing that I feel like I have learned so much about myself.
Here are the 9 things that tripped me up on my Autism journey:
I waited for Cooper to get older. I waited for him to be 1. And then 2. And then 3. I waited because no one believed me at his young age. But I knew. So, I waited for resources. I waited for someone to tell me what to do. I waited to get a diagnosis. I waited to get help from the county. I waited to get services. I kept thinking if I waited he would eventually snap out of it. Or improve. I truly believed that in my heart. And I felt so much guilt. I felt that by acknowledging Autism as a possibility I was failing my son. And that I had failed as a mom. Now I know that is ridiculous. Get help. The sooner you get intervention the better.
I listened to other people.
All of the people in your life have opinions. And most of them come from a good, loving place. They will tell you stories. They will observe your child and tell you what they think. Some good and some bad. I want to say that your neighbor is not a doctor. And your aunt is not a psychologist. They cannot diagnosis autism. Or say a child is NOT autistic. I’ve heard it all though. There is a saying that goes, ‘We all eat lies when our heart is hungry.” I think about that a lot. I was so desperate for my son NOT to have autism that I believed everything that people told me. I was told that boys are late bloomers. I was told that boys are late talkers. I was told that everybody eventually talks. I listened to every story that was told to me, emailed to me, or shared on social media. Trust your gut. I learned to do that and it changed my life. When it comes to Cooper my instinct is always right.
I tried and put way too much time and money into ‘gimmicks.’
Child cured from autism when parents removed gluten, casein and dairy! Or, nonverbal child starts speaking weeks after starting Fish Oil Supplements. You will hear about these miracle cures. I tried ALL OF IT my friends. At different times I believed my son was autistic because his tummy was messed up. I thought if I fixed that I could fix him. I had a crisis social worker tell me that if going gluten free cures your child’s autism then they weren’t autistic to start out with. I’ve held onto that. But oh my good lord the money I spent. The time I spent researching. Buying books. And the time I spent trying to get my child with severe food aversions to eat new, creative, gluten free foods. I think I hid the fish oil in every type of juice. These miracle cures are really, really frustrating because they most likely won’t work for your kiddo. And you will feel like a failure all over again. They bring false hope. To this day I shut down when someone tells me about a friends sisters son that was cured. False hope is brutal. I even tried bringing Cooper to a healer to have his Chakras realigned. Not bashing healers here (Or parents that go gluten free)…I am laughing at myself because my son refuses to sit or be touched by strangers. I spent $150 on a healer that’s sole purpose is to touch the child. I failed.
I felt guilty for using Autism resources.
In the state of Minnesota every child with the diagnosis of Autism qualifies for Medical Assistance. If the parent’s make too much money then they qualify for Medical Assistance-TEFRA where they pay a parental fee. Full-blown Autism therapies can cost upwards of $200,000 a year. Yes, you read that right. And, furthermore, most autism programs will only accept a child if they are on Medical Assistance. Like Fraser or the Minnesota Autism Center. I can’t even tell you the guilt I felt for having Cooper on medical Assistance. I felt like I was a user of the system. I felt dirty. I felt poor. I felt embarrassed. Cooper’s dad and I wanted to keep it a secret. This is absolutely ridiculous. Our kiddos need help. The help is insanely expensive. TAKE THE HELP. We waited to get it. That was silly. We are still paying for therapies from 3 years ago. And don’t feel guilty. The money is out there to help parents like us. Use it my friends. Keep your sanity.
I was afraid of the village.
When your child is diagnosed with Autism things start to happen. It feels like something huge is being set into motion and your are slowly losing control. The school district gets notified. The county gets notified. Your child starts having more therapies. More doctors. You add in more and more people to your inner circle. Many of the appointments are in your own home. It feels weird. You have to repeat the story of your vaginal birth to complete strangers. It feels uncomfortable. I fought getting a social worker until a year ago because I didn’t want to let the county into my life. It made me really uncomfortable. That was so silly. Once I did that a world of resources opened up to us. Grants, waivers, respite, communication devices, free diapers to name a few. I would have never known about these things if I didn’t open myself up to the village. I counted today in my head that Cooper has 25 different people that have a direct impact on him and his care. That’s ridiculous. But it’s also saved his life. Let the village in my friends. It will feel weird at first. Almost like you are losing control. But do it. Build the village that will surround, protect and advocate for your child.
I didn’t speak up.
This one is tough and I think it comes with time. At some point in your journey your skin will get incredibly thick. You will feel or see something that doesn’t seem right. You learn to ask lots of questions. You learn to force communication. You will learn to speak up. For example, not every teacher or therapist or doctor will be the right fit for your child. This was a hard one for me to accept. I remember a time when Cooper was receiving private speech therapy. I loved Cooper’s therapist. I started a friendship with her. But in saying that, she was not the right fit for my autistic child. Not every person will bond with you or your child. Be loud about this. Ask for different teachers if needed. Make noise. Find the right people. I also remember another time when I had to demand an x-ray for my son’s stomach. The doctor said he was fine during the appointment. I walked out. Then I walked back in and said no. I want an x-ray. And I got one. And I was right. His stomach was terribly messed up. Speaking up is really hard and uncomfortable. Become a mama or a daddy bear. Fight for what is right for your kid.
I didn’t ask for help.
‘I never knew motherhood was going to be so hard for you.’ I read that somewhere. Or maybe I heard it from a friend, I can’t remember, it’s been too long. Anyhow, it’s mean and it makes me laugh. Raising Cooper as a newborn and toddler was so unbelievably hard. I still have PTSD from it. I felt the pressure to do it all by myself. I was his mother. His dad and I didn’t need any help. I should’ve asked for more help. It’s out there friends. Reach for it.
I isolated myself.
I pulled away from friends and family who had kids around cooper’s age. I severed friendships. I skipped family events. I couldn’t bring myself to be around them. It physically hurt me to see babies the same age. Hearing about their milestones made me feel sick. And for others to ask question about Cooper. I often felt like I should lie. If I didn’t it would just prompt weird looks or the ‘lies.’ I couldn’t figure out why my baby crying all the time. The other parents seemed so relaxed. Why was I covered in sweat and chasing my child? At times I still avoid his school. Seeing his peers is more than I can handle. This is silly and I am working through it. Friends and family should be the people we turn too when we are in crisis. But I did not. And I have some pretty big regrets around this one. Isolation makes everything worse.
I beat myself up.
I put way too much pressure on myself friends. I should’ve grieved but I thought by grieving I was giving up on my son. Or being a bad mom. All false. I also would blame myself. I must have done something wrong. I failed. Or at times I felt and still feel like I am not doing enough. There is no instruction manual that comes with being an autism parent. You will figure this out on your own just like I did. And you will do amazing. And eventually, like me, you will help others. It takes time though. Get through the first part of the journey. The big, steep mountains that feel almost impossible to climb. And don’t ever beat yourself up for feeling a certain way. You are doing the best that you can for your child all while being a parent with very real human emotions. Give yourself time. You’ll get through this. And I can tell you that the bottom of the mountain feels pretty good so far.
NOTE FROM MARCIA HINDS – Megan and Ryan’s mom:
Ryan became an aerospace engineer, because he received proper medical treatment combined with behavioral, and educational interventions. To preview my book, “I Know You’re In There – winning our war against autism”go to Amazon or my website www.autism-and-treatment.com
Contact info for Marcia: