Autism can be challenging for families of children who have just been diagnosed. Camille Robinson, host of the Moments of Joy Podcast and mother to a son with autism, writes about her family’s experience with autism.
Get helpful tips from her and hear about Maison’s story in this article.
Maison’s Story
In 2019, Maison was about 1 ½ years old, and his daycare teacher started to notice a delay in him while he was at school. She asked me if I would be okay with signing him up for an early intervention. My response to her was, no, Maison was born with congenital heart disease and he had 3 heart surgeries already by the time he was 1 year old, with the last being open heart surgery. I was so protective of him that I asked the teacher to give me 3 months and if he didn’t improve to come back to me and we would consider early intervention.
3 months passed by, and indeed, Maison did not improve, so we agreed to let him begin early intervention. In the state of Connecticut where we were, it was called Birth to Three Services. Maison began Birth to Three Services, and after a few months, they suggested that he get evaluated for autism.
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Maison was diagnosed with autism in June 2019.
I wish that I could say that the journey of autism parenting has been easy, but it's been one of the most difficult things, even more so than open heart surgery. I think one of the things that is most difficult is that when you are given the diagnosis for your child, you are given direction to begin speech therapy and maybe occupational therapy, but that's it.
No one really takes the time to dive deep into all available resources that there are for you. You're left with figuring it out on your own. I, over the years, have figured out a lot through tears and frustration. One of the major things that really blessed me along this journey was connecting with other parents.
For us, autism comes with a lot of sleepless nights. Maison would, and still sometimes does, wake up in the middle of the night and literally stay up all night long, maybe 2 or 3 nights in a row. My husband and I were exhausted. We had him see a neurologist so that we could find out how to help him sleep.
Ultimately I’ve gotten the most tips on how to get Maison to sleep from other parents. We’ve used Melatonin, lavender essential oil in his bubble bath, and made sure he has a good sleep regimen at night. Also no more naps during the day! Even buying light blocking curtains helps because sometimes it's just a simple light that's coming through the window that is causing a sensory overload for him. We've learned so much along the way.
Autism has also come with a lot of meltdowns. I had to learn about sensory input and Maison's need for it through ABA therapy. I learned that every behavior he has is most times because he has a sensory need. I learned about proprioceptive input and tactile input and how I could help him through those meltdowns.
I also learned about diet, which led to us removing red dye 40 and other harmful things that are in our foods today. The diet change has helped with hyperactivity in some of those behaviors that I was seeing like self-harming behavior.
Helpful Resources for Autism Parents
1. Aeroflow Urology.
We have been using Aeroflow Urology for a little over a year now. They were major in helping us to be able to take care of Maison's incontinence needs because he is not potty trained yet at 5 years old. We've used the Sleepovers brand pull-ups, which was a favorite for Maison.
As he began to grow, we moved over to the Prevail name brand. I love that Prevail has stretchy sides, so even as he grows, it grows with him.
I love that they are so durable and when he sleeps at night, he's waking up and the bed is not wet. I'm all about high-quality products. I don't like cheap things and Aeroflow Urology does not send cheap products!
2. 2-11.
2-11 is available all over the United States. You can call from any phone and let them know what you need and they'll give you a list of organizations that can help with that specific need in your area.
3. Support groups.
3. Support groups.
Connect with other parents like you and other parents will share with you what works for them and what resources they've found. Most parents are so open with sharing.
Today we have a community for parents raising children with special needs, and that was born out of the necessity to find resources. I began to connect with other parents who taught me so much of the resources that are available today for parents.
My advice to a lot of parents now is to join a support group. They have a lot of support groups on social media, and when you follow other autism moms and dads, you end up learning from them and from their followers, and you learn through the comments.
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Disclaimer
Information provided on the Aeroflow Urology blog is not intended as a substitute to medical advice or care from a healthcare professional. Aeroflow recommends consulting your healthcare provider if you are experiencing medical issues relating to incontinence.
