As the summer is coming to a fast halt I reflect at the activities we have done and within those activities there has been many many obstacles and achievements.
I have always been the type of person to get up and go. It was not until I had my son that I had to put the breaks on a bit. Since day one he has not been a pick up and go kind of baby (now preschooler). I go back and forth with nudging him out of his comfort zone but having my back-ups of course. I always ask myself on the way to our destinations and in the midst of tantrums while we are stranded at a vacation spot: is this worth it? Do the tantrums and sensory overload moments outweigh the moments of fun? I have yet to answer that. Having a child on the spectrum and tons of sensory challenges is like playing roulette daily. You never know what the outcome will be and I am always surprised in good times and bad.
I am glad we have nudged (okay pushed) him to get over some of these challenges and break away from our rigid routine at home. It is these extremely dark yet exciting voyages that have helped me as a mom of a sensational kiddo gain some more tools in my tool box. It’s given my son an opportunity to overcome obstacles with a zillion back up plans in place.
Maybe a bit selfish but these trips keep me sane it is a little slice of therapy for me to go to a favorite scenic place. It is good and necessary for my soul.
After a particular difficult trip in Tahoe this summer I was able to reflect and look at our challenges last year and look at our current challenges. It was not until my reflection I was able to find a few achievements that were going unappreciated. Frustration had kicked in full force that quickly transformed to tears streaming behind my glasses. I froze and was unable to access any of those tools I had spent so much time researching. It was like he had never done this before. At the moment I was regretting I drove 4 hours with a screaming kid to then be miserable at our dreamy beach spot. My sister who “gets it” jokingly asked me if I was having fun yet and I was speechless.
After almost two hours of tantrums which brought us close to nap time at this point we resorted to going in our sensory break pop up porta-crib where no dogs or bugs could disturb him. I often repeat to myself during these lengthy tantrums it is harder for him than it is for me. Thank god for naps. It was the clean slate we needed to make this day a good one. I was able to re-fuel in order to deal with whatever the afternoons obstacles might be. During my break on the beach I was thinking how thankful I was to be around family who got it and could support us.
Last year he would go nowhere near the sand or water. This year he would sit in the sand and play in the water. This was HUGE!!! It is easy to get stuck, compare to other kids and make sand castles out of pity parties. I need that precious energy to help nurture the journey to these achievements that may seem minuscule to the typical family. The highlight of our trip was a walk on the pier where families were jumping off. After much observation my son had decided he wanted to jump in with me. I warned him that it was freezing and he does not do well with extreme temperature change. He is extremely cautious and hates not having control so this surprised me. He often will surprise me like this and it makes for an exciting ride up or down. I planned out my jump ahead of time to help him feel more comfortable. He freaked out for a second until he heard the whole pier clapping for him including his aunt, uncle and cousins. The look of pride on his face that lasted the whole afternoon outweighed the torturous morning we had.
This leap of faith decision he had made confirmed for me moments like this make all the struggles worth while. I can hang onto that colorful moment during the not so colorful times ahead. I always look back at my Facebook pictures and pretend I am a distant friend with no information about my kiddos jumbled up central nervous system. We look so happy. These happy snapshots of us jumping into freezing cold snow melt off look so seamless. If they only knew the blood, sweat and tears that go into every trip.
Tahoe was one of three trips this summer and who would have thought that the happiest place on earth was the hardest. We took him when he was 18 months and I joked I was going to move there because my guy is such a sensory seeker that all the stimulation was great for him. Not one single spout or scream in four days. We decided to visit a year and a half later. What we had not thought about was his new fear of the dark after spending a week in Alaska where it is light out all the time. He also is older and has more schema of his world. This resulted in him being scared and terrified of everything Disneyland had to offer besides the monorail. It was one of our toughest trips yet.
To get through such a tricky trip like this it helps me to pump myself up and tell myself I was handed it because I can handle it!!! It may sound a tad egotistical but in reality I was handed my son to learn and grow. I have learned so much about kids on the spectrum and SPD. For that I am extremely thankful!