9 Big Mistakes Parents of Autistic Kids Can Avoid
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.
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.
Everytime I read your blog it brings tears to my eyes. My son was recently diagnosed with autism 4 months ago. We are new to this world so I’m feeling everything . The one thing I could say I’m never too embarrassed to get help or anything like that. As soon as my gut told me things are not right and seeing other kids doing more than my son. Is when i said enough of maybes and found the help my son needed . Soon he will start ABA theraphy
So grateful for this post! Heartfelt thank you. It feels so good to know you are not alone.
My Grandson is 16 years old and we have had the same struggles that you have had. My daughter has gone thru all of these above tests. He is a beautiful young man and we pray everyday that he will have the ability to work and take care of himself. In 5 and 6 grade he was bullied and they broke his lower leg twice. He then was home schooled for 2 years and now in high school.. His struggles continue with getting his home work in on time. He does not want others to think he is different. We hope some day he will embrace his diagnosis. We did put him on Namenda in 9 th grade and Concerta. The Namenda is experimental. He no longer has melt downs since he is on Namenda. The Concerta is to help with executive function. It a long jouney but he is worth it. Hang in there
Reading this is like a recap of my life. So many things that I feel/ felt / went through/ and still going through. Reading this made me feel incredibly not alone in the choices I have made. Especially choices to just be happy and enjoy our life and our son rather than spend my life and money trying to cure him. Embracing my village which is made up of many great friends and family whom now I can finally ask for help. (Now that my son is 8). It took so long to be able to believe that people could help. My husband and I went into isolation for a long while when my son was 2-4ish…
Anyways. Thank you for this. I felt you you knew my story and were telling me good job.
From a mom of a non verbal autistic 8 year old boy.
Awwww my heart <3 It feels good to read you. I can see alot of myself in this blog. thank you.
Hopefully I can provide some good news. We all have children with different abilities, and while our journey may sound easier than someone else’s journey, it was not. My son was born in 1988, and while I knew he was autistic at age 14 months, no one would acknowledge his autism until he was 9. At that time the doctor who was supposedly an expert told us he would never be able to ride a bike, take public transportation or hold down a job. At age 16 he was diagnosed with aspergers, anxiety disorder and OCD as well. Meanwhile we made sure he was in the early childhood classes from age 3 and that he received all the services he deserved all the way through high school years. We joined support groups and got outside counseling for him and us which did take a toll on our finances. During his early years he did not speak in complete sentences until age 6. He had daily tantrums 5-10 times a day. Both my husband and I worked full time because we had to, and we had two other children. It was not easy. In Illinois we could not get respit services, and after age 21, there really was not any service organization worthwhile. We still struggle with his emotional well being, but I am please to say that he does take public transportation; he rides a bike; he has gotten all three of his part time jobs on his own; he is a Eucharistic minister in our church, and he is in the choir. He spearheads trips to the local food depository. It was and sometimes still is a rough journey, but we, along with the support of his teachers, our current therapist and our family, have survived the worse of it. We have all grown because of him. My advice is to take what the professionals say and apply only as necessary, continue the fight for your child, and know that any child can achieve the best of his/her ability with your support. God bless.
Your son sounds absolutely amazing! Hugs mama!
My little boy was diagnosed recently he’s 3 and I’m a whirlwind of emotion at the moment even though I knew he was not like his peers it still hurt like hell to hear he has asd this life is new to me and his dad so thank you for the advice
Oh my this is me too!! I feel worse because my son is 13 and was just diagnosed 3 years ago! So I am constantly playing catchup as he really needs lots of therapies! Thanks for your story!
Thank you. Your story has impact me in a way you can’t imagine. Yesterday, May 24 2018 my son who is 18 months has been diagnosed with Autism. I knew something wasn’t right in him but I ignore it just like you did. I listened to others just like you did. I avoided the thruth that I already knew but I won’t hide it out like you did and I thank you for sharing your story and for helping me understand that I am not alone in this journey.
You wrote my heart out. Every single point.
My son is 20 now, so I rarely read these articles. I’ve got to say you hit it right on the head!! Everything from all the therapies, diets, hyperbaric oxygen chamber lol. Yep did them all and went broke. Had his mercury levels check (good ole Dr Andrew Wakefield had a lab in Kansas I believe) Did algae supplements with him, mixing that awful stuff in his pudding (poor kid). I couldnt bring myself to go to family gatherings and lost friends also. At first it was watching all the other same age toddlers that tore my heart out. And oh the questions!!! Then his behavior changed and got aggressive.
The one point I must stress is like you said “the hep is there, reach for it”. Do it! Get everything you can!!! After 18 and again at 21 things are so different. I thought it was hard then, well now it’s a living nightmare. They have no rights. Do what you can now!!!
I love this comment! Thank you!
Thank you. I got to the part about isolating myself from kids your son’s age and I just started bawling. Thank you so much for writing this. You’ve really touched my heart. This sh!t is hard!
Heck yes it is hard. Hugs to you mama!
Found your page today, I am 5 months into autism “officially” but have known for a while something was going on with my son. I’ve been reading your posts with tears in my eyes all evening. Thank you for sharing your story. I relate so much and it’s nice to get advice from someone years ahead of me
I found this article all the way in Australia, after reading about your terrible treatment at a special needs playground. The isolation, from both our NT and the Special Needs communities are so real. We are lucky to have found a group of families that join each week for an Autism Friendship group, somewhere I have found my kin, somewhere my daughter is understood, befriended and cared for, somewhere my journey is the norm and I am not alone, somewhere we can share resources and advocacy skills, somewhere that is safe to be us.
If parents don’t have a group like this nearby, start one. Without one family starting ours, we would still be alone.
Xxxxx
All I can say is thank you. I appreciate your words as I am currently going through the journey early. My son will be 3 next month and has recently been diagnosed through a behavioral counselor and we see the psychologist/neurologist next week. I felt every word you said bc that has been me this last year. After 5 daycare’s/ preschools and tons of counseling, it’s heart breaking and reassuring to know we have a path and resources. It feels good to know I’m not the only one. All moms should stick together and appreciate you for posting this.
Thank you for sharing! My son was diagnosed in March, he will be 4 in August. It is very overwhelming and sometimes I just cry. He now attends a school for kids with autism. I was getting on it very quickly. I do find myself isolating him because I’m worried he will have a tantrum or run off. I keep reminding self that it can be worse but find myself feeling sad again. I know it will get better for the both us.
Hi my name is sindi.my daughter is 6years new she still in nappies can’t talk..I’m also looking fr school
Hi i am a new teacher or an autism child. He gave me a lot of challenges when i was new. I am from Pakistan. The first day was my physical torture day. He beat me alot with kicks, nails, spits etc. The second day was emotional abuse day. The abused me with all bad words that can even cause some severe issues if normal people are saying that. Third day was a mixture of both lol. But let me tell you that every new day was an improved one day. I gives him a alot of kisses and hugs. Surprise gifts etc. I hope one day he will become just a normal person with ni behavior issue.
Found your article randomly when I googled, “why is my autistic son so silly all the time?” And somehow it let me to you. Thanks for this amazing article that I really wish I found 3 years ago when my son was diagnosed. He is now almost 5.
Hi, my name is Robyn and my 5 yr old son is autistic..this has been so hard words cant describe. Im trying to reach out more and get more advice because im going through such a hard time. Its good to know im not alone..
What a gift this blog post has been to me today. I feel like I could’ve written it myself, if only I had the energy to string together coherent sentences. Thank you for sharing your heart…such a blessing for a mom who is just starting this journey.
Thank you for sharing…..our son is 2. We are in the uneasy process of building the village. I appreciate you.
Thank you so much for this. I needed to read this. The last point is where I am. I know I need to grieve – but I can’t. I’m struggling with beating myself up, and blaming myself, and getting frustrated and getting angry, and feeling guilty, and feeling like a failure.
Thank you.
Thank you so much for sharing.
My Grandson was recently diagnosed with autism My daughter taking hard but I tell her everything going to be ok do you ha e any advice for her… Read your story and gives us relife that every thing wl be ok
God bless you!
Your post made me feel like I’m not alone. Thank you so much for sharing. Sometimes people don’t understand unlesss they have lived it.
I keep reading your blog over & over again. I haven’t read anything that I connect with as much as this. Yesterday my son 9yrs went to Hyms and now is been referred for assessment which is a 12 month wait. I’m looking at going private. The journey you explain is my exact journey. I’m like an emotional rollercoaster. This blog helps and touches my heart each time I read it.
Thank you