My son Colton recevied his diagnosis earlier this year. As much it felt like a punch in the gut for me to officially hear, I quickly realized that there wasn’t much time for a pity party. As his mom, I needed to do whatever I could to best support him and his needs. Initially, I was scared of him having a label but I quickly learned that his disgnosis was much more then a label. It was an oppurtunity for him and us as a family.

 Colton’s diagnosis gave us a new lens to how we would live our lives. Although it did not change who my son is, it allowed us to educate ourselves to be better for him. We learned to think differently. We learned to plan differently. Most importantly, we learned to live differently. Ultimately, different was now our normal and that was totally okay!

When you have a child with special needs, you feel like you always have to be on. Almost as if you are one step ahead and ready to respond to whatever situation arises. As time goes on, we have learned a lot and are still learning. I can assure you that the learning will never end.

As we move through the motions of day to day- morning school, afternoon school, OT and speech- every minute is accounted for. It is routine. It is clockwork. It works. But what happens when those daily routines take a break? Holiday vacations and lots of time where the daily routine is different. For a child that needs structure, planning is instrumental.

 

For me Halloween was an eye opener. I typically have family at my house for a pre-trick or treating party. I planned activities to create a non-overstimulating environment to allow a calm evening for everyone that attended, particularly my little guy. Those activities included pumpkin painting and even pumpkin pizza making. (A huge hit…thanks to Rocco’s Off Wooster in Guilford, CT) This allowed for everyone to be engaged in fun activities that were meaningful and educational.

 

Truthfully, I prepared myself to have to cut the night short because it would be too overstimulating for him.

I stressed about him staying with our group and not darting out into the road. I was ready to have to explain that he may not be able to say anything as we approached houses and dug his hand in the candy bowl.

As our group started our night, I literally took a deep breath and said a little prayer. Someone up there heard me loud and clear!

Colt was amazing. We made it to about 12 houses. He walked with our group, even leading the way sometimes. He patiently waited at each door. I heard his little voice say a few ‘trick tricks’ and lots of ‘thank yous’. For a child that has been non-verbal for the past four years, this was huge. There was not one tear. Not one stressful moment. He had the biggest smile ear to ear.

My favorite was the last house. We thought the lights were on. We knocked, rang the door bell and waited. Nothing. My daughter knocked once more. Waited and again nothing. I was ready for the meltdown. It was coming. I felt it. His little face looked up at me with those big eyes and said ‘oops, sorry’…. He turned and walked down the stairs with his bucket of candy and we walked home.

As we walked, I snapped this picture. I needed to remember this night and this moment. It will always be a favorite memory of mine. My guy and I have worked very hard to get to this point and it couldn’t have been more perfect.

 

As we approach the bigger holidays, I started to realize that the fun holiday activities that you see other families doing may not work for our family. So we shift. We adjust and more importantly, we create our own fun activities and traditions! 

My son is not a fan of Santa but he LOVES the Grinch! So instead of a picture with Santa, we are planning for the Grinch to visit our house for a fun photo opportunity. This was something we did at Easter time and it provided an inclusive holiday experience for my son in an environment that he was comfortable in. 

In our activities from Halloween, I learned my son has an interest in preparing foods and I also know that food fosters language for him.  Although we have not approached Christmas Eve, I plan to try something new this year. Instead of purchasing Santa’s treats, we are going to attempt to make them. Cookies and donuts are some of my son’s favorite words so this will be the perfect time to encourage him with an activity that can help to build life skills, promote language use and start a new family tradition that we all can look forward to!

 

 

Prior to being a parent, I thought I knew what raising children would be like. I was wrong. It is better than I thought. I learned that challenges will come but as a family we will overcome those challenges. Most importantly, I’ve learned it won’t always be easy but it will sure be worth it. Even without the words, your kiddos will show you!