When DW was born, I did what all new mother’s do. I counted fingers, toes, smelled him, kissed his gummy, little face and held him close to me. After his first surgery, I did what every mother would do, I believed my son would grow up, be the smartest kid in the class, he would have so many friends and they’d all hang out in my kitchen after football practice. My son would be the quarterback, in case you were wondering.
A year later, when the signs that something wasn’t “right”. My denial and dreams would still hold. A year after that, they would all come crashing down around me. By the time he was 2yrs old, our world would revolve around every kind of OCD ritual and SPD behavior you could imagine. Life became about excessively washing our hands, no nuggets because they have crumbs, no mashed potatoes because we can’t swallow them. If we walked in front of you to get into a room, we had to walk in front of you the other way to get out. Everything was color coded, everything little thing had it’s place…..I could go on and on and on really. Each year brought a new diagnosis, first OCD, then SPD, then Tourette Syndrome, then ADHD, then explosive behavior disorder, etc. Each year became a new education and yet another new diagnosis, another year to learn methods of coping, dealing and working with whatever new acronym was thrown at us.
It wasn’t always as gut wrenching as the very first diagnosis is, where you learn that your child isn’t like everyone else’s. After a while, your perception changes and you realize what it takes other mother’s lifetimes to do. That you will be happy as long as they are! Yes, it’s that simple. As long as you know they are safe and overall happy, then life begins to have this hope about it. You take each tiny thing as a sign of hope. Each step is celebrated as if it’s the last and your life finds that the celebrations and feelings of admiration and love far outweigh the struggles.
In our home, I had to medicate DW. I cried for days over the decision but, there was no other way for him to even be functional without them. So, meds along with a slew of doctors/ specialists and therapist/psychologists, we went about our lives. We dealt with the sensory issues as they came. Myself having it, I was more prone to understand how he felt and what he might be going through. Things began to take on a routine and things were comfortable. Which more often than not, is when things are shaken up!
Welcome little brother to the mix! He makes our lives complete in every way but, was completely unexpected and unplanned.
JD was a preemie, who was extremely sensitive to touch, light, sound, etc. Which in the NICU made me for small moments wonder if he’d be like his brother. Then I pushed it all out of my mind determined to not do what ifs and enjoy this “normal” baby. By the time, he was 6 months old, that old familiar mommy alarm was going off in the back of my head but, like old times, I ignored it. By 9 months when he’s not crawled and was making no effort to do so, was not talking and tummy time….tummy time was a nightmare, I knew that he was having problems. He was happy for all intents and purposes, almost too happy! Which again prompted the mommy voice in the back of head, that he might be like DW.
Needless to say, just like always the mommy voice, was right. JD was diagnosed as having SPD! Oddly enough he’s almost the opposite of DW, I mean some things are the same water in general is bad, but baths are good. Other things, in fact most things though are completely different. So, where I was an old hat at life with SPD, I find that I am now a newbie! Learning new strategies, new sensory things that I’d never thought of before. Where DW is mostly tactile defensive, with waxing and waning “seeking behaviors”, hypersensitive to sound, who is orally defensive when it comes to food texture but, mouths anything he can get his hands on and extremely light sensitive. JD, is aside from water, bubbles and diaper changes, far from tactile defensive. He is a CONSTANT seeker and I have the bruises to prove it! He is oblivious to sound in general, walking around with dirt and slobber all over his face, doesn’t mouth anything really but constantly over stuffs his mouth and chokes on juice! (mashed potatoes are still a no no though) Not to mention that his spatial awareness, lacks some serious awareness! There are times I can’t take him in public because I’m convinced that they will think I’ve put him in back alley toddler fight clubs! He’s split his vermilion (the flap of skin that is under your top lip, connecting it to your gums), so many times, the scar now shows on the outside of his lip!!
Life has taken on a crazy pace now, filled with appointments 2 – 3x a week per child for various therapies (OT, PT, SLP), therapist appointments, neurologists, etc. Daily OT & PT sessions in the home. Learning how to cope with new sensory challenges is now a daily thing. With one child who waxes and wanes in his sensory needs and behaviors and one who is ALWAYS on, can be a challenge, especially when they are opposite of one another.
JD likes his food cold, DW likes it hot (too hot in my opinion and we fight often over this). DW likes soft foods, JD like crunchy. DW is on a “crumby” kick right now and JD hates crumbs! Trying to keep up some days is hard but, at the end of the day, you just have to sit back and laugh at the two of them. They are the sweetest boys and believe it or not, are learning to work together sensory wise.
For example, DW refuses still to wash his hands after the bathroom so, I compromised and got him hand sanitizer. Anyway, DW puts sanitizer on his hands and will call for JD. JD comes running full bore and if you’ve got a sensory kiddo who is spatial and body awareness challenged, this makes you sick in your tummy but, is so cute, you have to laugh. Then JD smells the sanitizer on DWs hands and for them both, all is right with the world. Or as I mentioned before, JD is a HUGE crasher. DW would rather be no where near JD when he’s crashing. DW though, loves deep pressure. So, DW will get all the pillows from all over the house, pile them into a pile in the corner of the bed and then crawl underneath, which is JD’s cue to go running and jumping onto the pile. Apparently this is a win win for them! JD gets to crash and jump, DW gets the deep pressure he craves without the injury!
So, while having two opposite sensory kiddos is at best challenging, it has it’s moments of humor. Life is returning to a sort of flow again and while I know that not every day will be perfect I’ve come to realize that it’s ok. That we’ll be alright as long as I can remember who is on the cold stuff, who has the hot and who does the crunchy!