Megan’s Autism Story

According to AustismSpeaks.org, it is estimated that 1 in 68 children in the United States are on the Autism Spectrum. The term ‘spectrum’ reflects the wide variation in challenges and strengths possessed by each person with Autism. Today, April 2nd, is marked as World Autism Awareness Day. The purpose of this day is to spread awareness, increase understanding and acceptance of those with Autism. At our Germantown Campus, our friend Max teaches us each day what it is like to teach, know and love a child with Autism. His mom, Megan, shares their story.

megan and max smilingHi, I’m Megan, Max & Cali’s Mom. Our family has been a part of the Momentum Family since 2016. Thanks for taking the time to read this little piece on Max and getting to know Autism in OUR house. I say this because everyone’s experience with Autism can be SO different as Autism runs on what we call a spectrum. The one thing that these amazing kiddos all have in common is that Autism has wired their brain just a tad differently to process the world. For some- it’s too bright, for others- it’s too loud, for some- fabrics feel like they’re wearing brillo pads, and the list goes on…it’s what makes each child so unique, but can make it also very challenging for parents as they try to figure out the puzzle pieces for their kid (this is why Autism is usually represented as puzzle pieces).
ward family photo

We currently reside in Richfield and are part of the Germantown Momentum Family, and I do have to say it’s been the best thing for Max. My husband, Matt, and I have been married for 12 years and also have a 7 year old daughter, Cali. After Cali was born, we were very excited to continue to grow our family, and when Max joined us, we were elated.

From day 1, things were different and extremely hard and challenging. Autism is usually not diagnosed until kids are about 2 or 3, but we are both teachers (my husband teaches Special Education), and we knew something was off. Max was delayed in his crawling, his walking, he was a terrible sleeper, and was very delayed in talking. We kept pressing doctors and asking questions and finally met the company WEAP.  WEAP (Wisconsin Early Autism Project) is an Autism therapy company in Wisconsin (there are actually TONS of them). WEAP does extensive evaluations of kids, and if they are diagnosed with Autism, they will set the family up with a team to provide the child with 40 hours of therapy a week. This therapy is to help them catch up and figure out their puzzle. We struggled so hard for three years but finding WEAP has truly helped us to understand Autism and how to parent Max.  They also really helped us to realize that our life will be different from what we expected, but we can enjoy it.

max reading a book

For Max, our biggest obstacles are his lack of communication and his outbursts. He has come SO far since WEAP, but Max still does not speak like a typical 4 year old. He is slowly getting more words and phrases but they are often out of context or challenging for him to get out, so he just says all the words he knows. There are many autistic kids who are non-verbal and never learn to communicate in the traditional manner, so this is something we are faced with as well.

Max’s other major struggle is his frustration with people not understanding him or being in his space. Max’s frustration often manifests in physical outbursts. For many years we dealt with Max scratching us, pulling our hair, hitting, kicking, etc. This is the part that many people do not see with Autism, but it’s very common. Children with Autism get violent when they are frustrated or anxious. Not only is it extremely mentally hard on a family but, physically as well. Through therapy and learning Max’s triggers we have come a long way, but it is still a challenge for us and for him at school at times. Finding a daycare that is understanding of this and willing to work with you actually proved to be quite a challenge for us, which is why we are so happy we are where we are now. Often because a child can look “fine” on the outside, people fail to see what Autism does.

So what does Autism mean in our house?

Max is one of the goofiest kids I know…he LOVES to laugh. He wants to be part of the joke; he wants to be part of what is happening in our house. His favorite phrase is “Alexa fart.”  Unfortunately she can’t quite understand him, but it never fails that he bursts into laughter after she does it. When Max gets excited he often squeals or yells and flaps his arms. He LOVES a good time. If there are people cheering, he’ll join in.  If they are clapping, he gets so excited and joins right in. He loves to be part of this world.

max and matt at swimming lessonsmax playing a keyboard

It also means he’s full of anomalies that we cannot understand. He HATES shower/baths – screams bloody murder, but LOVES swimming. He is not a big TV watcher, but will sit on the floor and read for hours. He gets startled and hates loud noise but LOVES to have the music on as loud as he can and so much more. He loves being in the car, but hates to actually travel overnight. He loves to be cuddled and tickled and touched and WANTS to make eye contact and interact with you, which is very unlike most autistic kids, but struggles because he can’t. If you ever see him, ask him for a high five – you’ll make his day!

It also means change is hard for Max…new routine, new people, new places are very stressful for him. Traveling is very hard on him. Whenever we do, he will often just say “HOME” for most of our time there. We continue to try to help Max experience new things and each time we do it, it does get better. Despite his slight disdain for overnight travel, Max loves big events. The loud noises do scare him, but he loves sporting events and outdoor event. He loves anything with a lot of stimuli. Max also loves music.  He loves to have music on, play his keyboard or bang on his drum– Mom and Dad, not so much. Max loves routine. Saturdays and Sundays are tough for him because we are home. We often take mini trips out to see buses or trains, as he likes to see the world.

max with cali

Autism in our house also means a very different life for Cali and us as parents. A lot of time and attention is devoted to helping Max, redirecting Max, and with his therapists, so we have had to really work on consciously being present for Cali too.  She went through a period where she started acting out as well because so much time and energy was devoted to Max. In addition as parents, it means our home life is VERY different. We have therapists in our house six days a week. They follow us home after work, they stay through dinner, and they are there on Saturday morning. Our time alone in our house is very limited which is very challenging. While we are FOREVER grateful, it does take a toll on our family dynamic as well. As a parent, all of your thoughts and beliefs on what life will be like changes, and that has been a great struggle for us. Through therapy myself, I am learning to redirect those thoughts and process to life now with Autism.

So that is Autism- it’s amazing, it’s horrible, it’s wonderful, and it the hardest, greatest thing we’ve ever done. Max has opened our eyes to a whole new world. A world that is fascinating. I could sit and watch him process and learn the world all day long. To watch him come from a kid who couldn’t talk, wouldn’t sleep and cries all the time to a kid who is babbling, smiling, sleeps like a champ and enjoys life is amazing. We have no idea where he will end up or what life will look for him, but right now we know that we are giving him every, and all, of the tools we can, and he amazes us every day. Everyone needs a Max in their world to remind them there’s more than one way to do it all.

ward family with silly glasses

For more information on Autism, visit Autism Speaks
For more information on WEAP, visit Wisconsin Early Autism Project