The Family Struggle: Global Apraxia and Sensory Processing
Every day—Literally. Every. Single. Day—starts at 1000 mph and does not stop. A dear friend of mine once referred to our son, Ryder, as “WAO” wide ass open (side note – we live in the South), because he does not stop or slow down. The only time he stops is when he takes a few brief moments to eat. He runs almost everywhere he goes, requires fairly constant supervision and has a very poor sense of fear. Ryder isn’t just an overly active boy. The reality is that, Ryder has Sensory Processing Disorder (SPD).
SPD is characterized by ‘significant problems organizing the sensation coming from the body and the environment’ and he is considered primarily to be a ‘seeker’. Seekers are frequently misdiagnosed as ADHD due to their constant movement and inability to sit still. They relentlessly crave motion – spinning, jumping, running, or crashing all provide the input that they “seek.” A professional once described seeking to me by saying, “When you or I ride a rollercoaster our system receives input that it is exciting and provides our brain and systems with enough input to be satisfied. Ryder would have to ride the same rollercoaster 10 times to receive the same feeling.” Sometimes I think of that as summary for our day to day life, we are content with the day and he is just getting started.
The isolation for families dealing with SPD is a deep, dark hole that isn’t spoken about. I am an outspoken advocate for children with apraxia, but it is not hard to see when my child cannot talk. Trying to explain what Ryder’s body “feels” is a whole different animal typically met with much resistance. You try sports but hear other parents talking because your son has singlehandedly turned soccer into a game of rugby that the professionals would be proud of. While I try to make light of it, it is a lonely and anxiety filled experience. As his Mom it crushes me to watch him have so much fun trying to play a sport that he loves and yet he has no idea that he is hurting or bothering another child. For him, he is doing what his body needs. I could not begin to count the number of times I have been told or it is implied, “he is just being a boy.” I always wonder, what if he was a girl? What is the line then? Does just “being a boy” mean that your child runs into the cabinets, walls, and furniture as hard as he can because he likes the way it feels? Because mine does. Or the things that usually tire children out actually wind my son up. Way up. Then he struggles to regulate himself back down, this typically leads to a meltdown.
For Ryder, meltdowns are not comprised of screaming and crying, as the name would tend to have you believe. They actually further his need to move – harder, faster and with no real direction but he literally must move. At home I have the “tools” to help him; he has a special swing, he can do “heavy work” - carry groceries, the full laundry basket, or get wrapped up in his weighted blanket for deep pressure. However, in public you scramble to chase after him, try explaining to him that you know his body is having a hard time and do your best to help him and hope you are not bother others. These meltdowns almost always lead to our family leaving an event or one parent being excluded while attempting to put on happy faces and know that you at least showed up, for once.
To say that being a parent to a child with SPD is exhausting would be polite, isolating would be an understatement, and difficult is just a bad joke. I hear people say, “I am so tired, I didn’t sleep well last night.” Really? I haven’t slept well in 5 years! Please, do not misunderstand, I love my son, with all that I have. He is one of the sweetest, kindest, most loving children that I have ever met and happens to be far too cute for his own good. But, it is exhausting, wearing and so incredibly draining. You live somewhere between desperately needing a break and being terrified to leave him. Ryder also has global apraxia so falling, tripping, cuts, bruises and blood are a fairly regular occurrence around here. When he is hurt or sick his speech takes a huge hit and he can’t generally tell you what happened. He also happens to have one of the highest pain tolerances I have ever seen. One of our first ER trips with him the Doctor said to me, “You are what we call frequent flyers. See you soon.” Of course you wrap all of this up and it’s not hard to understand why we are extremely hesitant to leave him. All of this is made exponentially worse due to people not understanding, assuming and passing judgement. Those who have never seen “it” just do not understand or feel he needs to be punished for his behavior. In some ways SPD has made me become stronger and numb to the nonsense, yet in others I have become more sensitive and reclusive.
Recently a friend of mine posted to Facebook about people not RSVP’ing to parties and how rude it is. Almost immediately another friend commented that it’s as if people are just waiting to see if there is something better to do that day. I know none of this was specifically directed at me but boy did it hurt. I knew I had not responded to this event and wanted to say -wait! wait! You don’t understand! But, I didn’t, I couldn’t. What do you say? These women know me, very well. They have no idea what it is like and truthfully I do not talk about it. I never RSVP to anything anymore because I have no idea what I am waking up to on that day. I want to, I want to go to everything that we are invited to. I always dread having to call the day of and say no we can’t come because Ryder is having a really hard day and I won’t even be able to speak with you if we show up. But I know they still wouldn’t understand or maybe it’s me just wanting to avoid the conversation. My husband works long hours and for me to commit to an event usually means I know he is off work and we can take 2 cars or my older daughter is home and will be able to stay with him. We have missed more birthdays, family functions, dinners, and playdates than I can count. I am sure eventually we just won’t be invited anymore. Having a child with special needs isn’t for the weak. It takes the best of you, every day. You do not have another choice, you give 1000%. We have lost friends, it has caused rifts in our relationships with friends and family, and we just stay the course. You will figure out real quick who your real friends are.
As difficult as it all can be I think it’s critical to point out we have come so far in Ryder’s struggle with global apraxia and sensory processing. He has words, lots of words and can talk up a storm! It might not always be intelligible but it’s always wonderful to hear. Our journey is far from over and sometimes his SPD can get in the way of everything he is trying to say and do, as if it is ruling his global apraxia at times. I try to note our successes and focus on the positive. If I didn’t I am not sure that I would leave my bed. Personally, I keep videos and watch them when I am having a rough day. They remind me of our journey and at times I need those to keep me going. I will say as difficult as this road is I truly believe it has made me a better Mom, wife and friend not to mention just a better human being. I no longer look at a child struggling in public and jump to conclusions about bad parenting or an out of control kid. The truth is, I have no clue what that child is going through or what that parent is dealing with. Who am I tell that kid they need to like the seam in their socks, the noise in the restaurant or be able to handle a crowd?! If you know someone whose child has a sensory processing disorder – reach out on occasion and ask them if they are okay. It will mean more than you can imagine and you may just be exactly what they needed to help them be the best parent they can be. As I said before, being a parent to child with special needs isn’t for the weak but sometimes we need our friends to help us replenish our strength and remind us of the light in our life. Be there for them, I promise they need it.
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