I remember the meeting.
We walked into a near-empty school. Parents who had been called to meet the teacher and principal.
After we sat through the necessary small talk they got to the point. They advised us that they wanted us to go through testing for MD. That he was displaying some ‘signs’.
My husband posed the question and their response stunned us into silence.
I remember the blank stare my husband gave me …. what IS that? We didn’t know a single person, we had no connection or knowledge to this small word that had just changed our lives forever.
The night was spent like I imagine most parents spend it after hearing the word pass from the lips of educators or specialists to their ears and into their aching hearts. Looking up online tests, completing surveys and checklists, watching videos and reading countless medical articles and personal blogs (Hello!). After looking through a slew of stories about how Hard parenting an autistic child is, and everything from meltdown to finances, when we were limp from exhaustion, eyes and brain burning from reading all the material, unable to make a coherent thought because we had just researched a thousand different ways to treat (or not treat), about diets, exercise, specialists and a MILLION different acronyms, we eventually fell asleep.
The next day brought new frustrations. Calls only to find out about long wait times. Calls to therapists and programs to find out he was either too young or about to age out shortly. No parent group to reach out to, support networks and resources wanted an official diagnosis, family and friends had no idea what to say …. all I wanted was to talk to someone about how conflicted I was feeling. Talk to Anyone that had been in my shoes and knew about the journey our family was about to embark on.
I felt so incredibly alone.
Each place I reached out to talked about individual therapies, nothing that included parents and siblings. Everything had a Do It On Your Own Attitude. Every site we went onto talked about curing Autism and nothing about accepting and loving our child just for who he is. We felt overwhelmed. We became increasingly more stressed and negative because everything we looked into was so pessimistic. There was no encouragement to find joy in parenting or your child. My son was, admittedly, hard to parent. His routines were carved into stone, meltdowns were incredible, self harming or lashing out at me was becoming a daily event because of all the extra stress happening in our family. My husband worked away from home, only coming back once a month for a weekend. I kept getting advice that placed the blame solidly on my shoulders. My parenting style was the reason he ‘acted out’. The self doubt, the guilt, the enormity that ALL of this could potentially be because of ME weighed on my heart.
I am going to fast forward in time now. I decided to ignore Every. Single. Piece of ‘traditional parenting’ advice I was given. I appreciate and value therapy and recognize that it is something my son absolutely needs, but I also dislike that so many of his therapies are individual. My son is ONE of my children. I have two other vibrant and wonderful children and I want them to all feel and be a part of our crazy unique family. So we found a family behavior therapist. We worked with this company for 7 years. We have come up with a slew of creative ideas that we incorporate into our everyday life for all of our children to help with: gross and fine motor activities, silly games to improve social skills, ridiculous things to help with recognition of emotions. We changed how we lived, either my husband travelled and we stayed home or we packed up and went with him and stayed for long periods of time in different places. Yes it was practical for my husband’s work, but it also gave us the ability to give our son the structure and routine he needed while showing him that he can be other places than just his home. In any place that I went, I made it my goal to build up an incredible supportive community.
If your child has recently had a diagnosis of Autism or is going through the process: Here are the words I need you to hear.
Seasons and Moments.
Our lives are divided into Seasons and Moments.
In the middle of a terrible heart-wrenching moment (diagnosis day – for example), you can breathe through knowing it won’t last long.
When you are struggling with a child’s behavior or something in your life …. it’s a season of Struggle.
Life is not static, things always change. Your child will change and the struggles will change, but if we work together, creating stronger families and communities, we can support each other through those moments and seasons.
Welcome to my blog. My family’s life can be messy (literally and figuratively). I’ll try to be Open about our family experiences and I hope that through reading about our struggles, our joys and just our everyday life, you will feel more confident in your journey!