How Racing Helped My Special Needs Daughter

Planning:

When you find out your child has special needs as a parent your mind goes all over. What did you do wrong, how can you help them? As a parent, these thoughts never really go away, or at least they have not for me. My daughter has multiple diagnoses. Autism, a speech delay called Apraxia, Anxiety, and ADHD. Those are her diagnoses but she is so much more than that. Violet is loving and kind, always wanting to be with people and help out.  She is a total goofball once you get to know her. Always on the go without off switch. The most striking thing about her besides her crazy curly ginger hair is her sweet little voice and addicting laugh. She is strong willed but is so determined to succeed in things once she sets her mind to it.

Those delays and disabilities are the ones that influence her day to day life the most. We started working with various therapists when she was 17 months old when she suddenly lost most of her speech a few months earlier. Since then her therapists have been encouraging me to get her out and about and around kids her own age. To find something that she enjoys and where she can have fun and be herself.

I felt that the individual aspect of OCR would work well with her lack of verbal skills. Since she could not talk at all I could not just ask her hey how does this sound. She always showed an enjoyment of mud, rain, and playgrounds. Some of her favorite things at the playground are the slip walls with ropes and climbing. She always gravitates towards these large motor skill activities. It seemed like obstacles and she would be a perfect fit. One of the areas she struggles the most is social interaction and patience.  OCR has these social components and interaction with peers while also allowing her to go at her own pace. So at the end of the 2017 race season, I started looking up what brands she would be able to run in 2018 and where they were located. I figured why not, what could it hurt.

The Races:

Race Prep:

Race days prep for us starts a few days before the weekend. This gave me time to make sure she understood our schedule would be different. Thursday we would start packing and this let me tell her we are going to go for a run this weekend to play in the mud. I let her help me pack all our bags. If you think packing for yourself on a race weekend involves lots of things, packing for two makes you look like you are going on vacation. The New Jersey laps in the nor'easter I had four bags total with clothes, food, winter gear, and blankets.  Over the summer when we had more flexibility in clothes she would pick which of her outfits she wanted to wear.  I would do her hair in the tent after she picked which bows she wanted while we relaxed after checking in.

I normally tried my best to plan our arrival and start times to be under an hour to check in and get ready. Thankfully I have raced enough to have a good idea on how long lines would be and what parking is like. One thing that is not an option for us is shuttles. Due to her age and the extra bags, we always have to use VIP parking if the on-site is not close by. Walking around the festival area was not something we did very much either. With all the strangers I noticed some days it would stress her out more than sitting around. I would rather I stress about time and logistics then have her worried about all the people around us.

Our Schedule:

She raced multiple different races and events this past year. From local 1/2 mile runs to 5k's, and OCR. We had days where the weather was 80 and sunny and then she even had 2 laps in the Spartan Mountain Creek, New Jersey nor'easter in October. This became a good thing as it pushed her to deal with changes in her comfort zone and adapt. She had races that she visibly enjoyed more than other though and as a parent, I did take note of that. I wrote an article before about 3 of the races she did called “So Your Young Child Wants to Run”  that talks about my thoughts on those races. She also ran 3 Spartan Race besides her laps at Bonefrog Challenge, Terrain Race, and Savage Race.

Our original goal was to do 3 laps on Sunday in Palmerton, PA. However, mother nature had other plans. Sunday at Palmerton ended up being canceled due to a storm. Sadly this then became a bit of a headache for me between deferral codes, coupons, live chat, and email. Eventually, with the help of Joe De Sena, I got everything squared away. I signed her up for 1 lap at West Point, New York, and 2 laps at Mountain Creek, New Jersey. This would let her get her Spartan Kids Trifecta.

Changes:

I started off this year hoping that these races would be something she loved to do. That she would jump right in and run away with the other kids. Keeping up with them, trying and doing her best. I hoped that she would do every obstacle even if she needed help. In a way, I was let down, but in other ways, she shocked me with where she made the most progress. I feel that is how it is with kids though they shock us as parents especially when we make assumptions.

Struggles:

What shocked me was some of the things she wouldn't do. I say wouldn't because I know she can physically do them. She refused to do any obstacle she had to crawl through. If she saw a barb wire style or tunnel she would start to cry. She only did the ones at Savage, PA that she could go through standing up holding my hand. Live and learn. Her favorite is the cargo net, but only when dry. She needed that stability of a good grip to feel comfortable doing this obstacle. West Point Spartan she loved the flat course till we hit the rolling mud that was deeper then she is tall. Being unable to swim the mud pits were a major no go by herself. She also preferred the sunny dry days over cold and rain.

Success:

Where I have seen the most change from my daughter is her social interaction with strangers. She doesn't love everyone on first sight or even likes them at all in some cases. If she is hesitant to say hi or give someone a high five she will say no. When the season started she would often throw things at people and try to run away. Her first race she would not leave my arms. Besides one person who bribed her with a treat. At West Point a few months later I was able to walk away to the trash can while she was with others without cries or tears. She was also much more willing to at least look at people who I introduced her to. I took that as a win, baby steps are still stepping forward.

To many, this might seem small but for me, this was a major accomplishment for my child. The people she had met before she would give them hugs. She even got to the point that there are times she will give new people a high five or say Hi. For a child with her delays that is a big step in the right direction and as a parent it was wonderful to see. One moment that stuck out the most for me was at Terrain Race. It was my daughters 3rd race and the first time she let a volunteer touch her. It brought me to tears seeing my daughter walk over and bend forward to get her medal at the finish line.

Influence on Others:

Special Spartans is a lap that Spartan race offers a set up for people with disabilities. Many people do not know this wave exists at Spartan Race.  I reached out to some runners who have run with or volunteered with this heat at Spartan Race. The thoughts about this seem to be positive from everyone I have spoken to.

I asked Marla Sweeney how she felt after running a Spartan Beast with a young lady who has Autism this is what she had to say.

“This past weekend, I had the privilege to team up with a 15-year-old young lady with Autism and do a Spartan Beast with her. I am 73 so we made a unique pair of racers. Seeing her overcome any struggles on the course and her determination to finish had me in tears. She is proof that Spartan is for everyone with disabilities.”

Jodi Amarylis has volunteered her time with the Special Spartans race multiple times in the past.

“Special needs does not mean incapable. Although some experience a greater challenge, OCR allows them to be the same as the others trying to achieve a common goal. As a Special Spartan superhero, I provide guidance and support on the course so they can conquer those race obstacles in addition to their own. Watching their excitement as the medal is placed around their neck brings me immeasurable joy. Their will to do is truly inspiring.”

In the End:

As my daughter is now becoming more and more verbal I plan to ask her in the spring if she wants to run or not. There were some days she loved being out there and others I could tell she wasn't not having fun. It will be up to her what happens next. I know a lot of the times she was not having fun the weather was miserable. As much as I wish I could control that it just isn't possible which might mean more last-minute race sign-ups for her if she does do them. I am also looking into some more bubble runs and inflatable type events too.

I loved seeing the progress she made socially and I want to keep that going by getting her out and about as much as I can. This could be at OCR events or just local fun runs. I feel it is important for kids with and without special needs to stay active and they have fun while doing it. I want her to grow up comfortable in her own skin, and for her to know that while she may be a bit different she is able to do things just like other kids.

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