Life Lately: Parenting and SPD
The cart is overflowing with bags full of food for the week, plus the weight of the boys in this two seat cart is making it hard to push against the bumpy pavement. If the boys shouting and my daughter pulling on my arm doesn't make it clear that I am ready to be done grocery shopping with three kids, the look on my face clearly shows it. My two year old, Hudson, drops his toy on the ground and the cart comes to a screeching halt to retrieve it before he melts down. I feel like a mess. And thats when she says, "wow, you have your hands full" (nose in the air). I can feel her tight lip and raised eyebrows through her dark sunglasses that act as a protective mask which makes her feel powerful and capable of saying the obvious to a struggling stranger. Yes, I do have my hands full. Thank you for pointing out the obvious. I don't respond and just keep going about my day. Is it worth feeding into?
What that lady doesn't realize is that it took us all day to prepare my two year old for what we called a successful outing. It took pristine scheduling. It took a well orchestrated and scheduled nap. It took 5 minutes of cutting off loose threads (unnoticed by most people) from his clothes to get him dressed for the day. It took a handful of conversations to prepare him for leaving the house. It took an hour of jumping, swinging, and pushing toys around the house to help him regulate. It took getting through a melt down as we transition from home to car. It took a car ride of screaming because the bright sun coming through the car windows is too much for him to handle. It took about a dozen stops in the store to keep him from exploding from all the sensory in the store: the sights, the smells, the sounds. And after all that, it only took her three seconds to bring me down with her snarky comment. She doesn't need to remind me that I have my hands full or that maybe I'm not the world's most "put together mom". She doesn't need to make me feel like I have too much on my plate. I already know that I do.
My child has sensory processing disorder. Simple outings to the grocery store are not taken for granted in our house. Every minor detail of our daily lives can not be taken for granted. Errands and outings, birthday parties and family activities, out of the ordinary trips are all meticulously planned and prepared for. If not, he has to pay the price when his brain can no longer process all that is going on around him and breaks down. An experience I wouldn't want any mother or father I know to have to watch their child go through. He is a good child and deserves parents who prepare and plan for him to have successful days that others can simply take for granted.
We began to see his differences come out like little whispers of his underdeveloped personality when he turned 18 months. Coincidentally, he had an unrelated febrile seizure right after that milestone. Maybe the seizure just opened my eyes more to watch him constantly and over analyze every move he made but I began to see signs in him of an underlying issue that I didn't see in his older sibling and other children his age. He didn't speak to us. He was extremely rigid and a control freak about his schedule. He was overly sensitive to touch and sights and sounds. He would walk on his toes. He would shield his ears and eyes. He would obsess over pushing the same toy around all day long. He hardly ate anything. He couldn't transition from one activity to the next very well. And he struggled with knowing his strength and would play too rough with others. These were just a few of the quirky traits we saw in him but it wasn't until he turned 2 that we really started seeing a pattern of struggles.
I contacted the Early Childhood Development Center to speak with someone about starting Hudson on speech therapy to help him communicate better with us. Not knowing anything about sensory disorders or ASD (Autism Spectrum Disorder), I did not see his unique personality traits as sensory related. I just thought he was a little different than other kids. When the speech therapist evaluated his speech delay, she recommended I have him tested with an occupational therapist who could observe how his brain processes sensory input.
After several visits with the therapists and continued speech therapy, we were told our son most likely has SPD (sensory processing disorder). From there, things got really challenging. It was as if once he was informally diagnosed, his SPD really took control over our lives. We found ourselves trapped in our home most days afraid of throwing him off his schedule. We found ourselves not welcome at our church anymore as they said he was "just too much to handle". We grew tired and fatigued from nights of sitting awake with him as he screamed for hours and threw his body against walls and hid in corners pulling his hair out. We found ourselves having little to no time to be with our other two children as Hudson needed 98% of our attention all day and night. We found ourselves afraid to make plans with friends and family because he couldn't handle the unexpected change to his schedule. Thanksgiving holiday sent him into a three week sleepless, screaming, head banging depression.
We were right in the thick of SPD and feeling pretty hopeless during that time. But we are gaining tons of progress now. We are managing his SPD fairly well now and the breakdowns are happening a lot less often. It's taken time, patience, love, and understanding to get through these challenges.
For those who have never heard of SPD, here is a little breakdown:
Web MD definition: Sensory processing disorder is a condition in which the brain has trouble receiving and responding to information that comes in through the senses. The condition used to be called sensory integrationdysfunction.
SPD Foundation says: Occupational therapist and neuroscientist A. Jean Ayres, PhD, likened SPD to a neurological "traffic jam" that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly. A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks. Motor clumsiness, behavioral problems, anxiety, depression, school failure, and other impacts may result if the disorder is not treated effectively.
Our personal defintion: Hudson has a hard time taking in too many sounds, sights, smells, tastes, and feelings in his environment. He also struggles with social cues and has difficulty understanding his boundaries with others. He is overwhelmed with the stress of trying to sort out all these feelings all the time and can explode with anxiety if not properly managed.
It was exhausting. It IS exhausting. And yes, we have our hands full. We have good weeks and bad weeks. He makes me feel like the luckiest mom in the world and he makes me feel like the worst. Sometimes we have our act together and days go perfectly smooth and others we are a mess and it feels like we haven't left the house for days.
We have come a long way from where we started with this journey to where we are now. We are learning more about his needs every day and managing it better. We are teaching him to self regulate and find better ways to manage his anxiety. We still have those days though. The days where we are just a hot mess and simple errands turn into disasters. And with no avail, some one always makes a comment to me when we are out in public in the midst of a challenge (sometimes good natured and sometimes not). He can appear like he's too much to handle sometimes - and maybe he is. But I trust that God put him in our hands for a reason. We are the best two people to take care of him. We were chosen for him.
This is just the beginning of a conversation I would like to have more of with my readers. Sometimes (okay, all the time) social media can make things look like life is so perfect. But we all have struggles. We all face challenges. I hope that by sharing a little more about our story, that it can help someone else.
For all the mother's of SPD or ASD kiddos, I hope you have a beautiful and smooth Mother's Day with no meltdowns and no worries. I hope you get a moment for yourself because you deserve that! For all mom's out there, struggling with challenges or not, I just simply want to applaud you for what you do. It's not always easy. I know you have your hands full. But if you had a free hand, I would like to give you a big high five!! You are doing great!