Any mother knows that from the moment your baby is born, you better start growing some thick skin. I never imagined it would have to be so thick so soon.
Many times I have struggled with how to respond to a seemingly normal comment about Will. Do I give a complicated response to avoid questioning looks or respond with a simple response and deal with questioning looks? The cashier trying to make conversation guesses Will's age and guesses 8 months younger than his age. The woman at the pool whose two year-old is extremely verbal tells me "just wait, at two they think they know everything." She doesn't know that Will is two and that I am waiting for him to show me he knows everything. The woman at the pool's husband asks me how old Will is and when I respond 2, he says "oh, ok" with a concerned look. The people who say "He must be saying all kinds of things. What does he talk about?" Do I stop and explain Will's situation to every stranger who is wrong about his age or concerned that he is not acting his age? I want to educate people on Will's challenges but correcting or giving a lengthy explanation to a well-meaning stranger will most often make the situation awkward. I am still trying to find the right answer in those situations and most likely I will just have to judge in the moment how to handle it. One thing I do know for sure is that it breaks this mama's heart a little bit more every time it happens. I wish I could say that I am immune to these situations, that they don't affect me. My responses will improve and I will grow stronger, but I don't think the hurt will ever completely go away. That just comes with the territory of being a mom. One thing I fear about letting it get to me and when Will is old enough to understand, letting it get to him, is that we will pity ourselves. From the beginning I have said that I never want anyone to feel sorry for Will, including me. Yes, it's hard to watch your child struggle, but it is nearly impossible to help another or help yourself if you are swallowed by self-pity. When I reached that magical point in every tween girl's life - the moment you get that special monthly present, my mom congratulated me then told me that I better not ever use it as an excuse to sit out in P.E. I have taken this advice with me all of my life. Be strong, don't back away from difficult situations and don't feel sorry for yourself. It gets you nowhere. I cannot focus my energy on being sad or sorry. I'm not saying that I have never thought why me or why Will, but we can't go down that path. We will walk a different path, one that is focused on building Will up.
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When Will was old enough to start attending the multitude of toddler activities offered in town, I had visions of library story times and puppet shows, music class, gym class and art class. I wanted to make weekly activity calendars where I incorporated these planned activities with learning and art activities at home. I quickly learned that this is not how our days would play out.
We noticed early on that Will would move from toy to toy without spending more than 30 seconds with each one. This was not an issue until the behavior continued into the toddler years. His short attention span could be due to any number of things, but our best guess right now is that as a sensory seeker, he is constantly seeking sensory input, leaving little time to stop and attend to an activity. He appears not inquisitive or interested in learning when really his search for sensory input just takes up all of his time. Enter the Wilbarger Protocol, otherwise known as The Brushing Technique. The technique involves applying deep pressure with a small surgical brush to brush the arms, legs and back followed by joint compressions. This is done every two hours for two weeks at a time. While there is not a lot of research to confirm the benefits of this technique, many parents report that the technique improves sensory symptoms. We began the brushing technique a week ago. Within 24 hours, Will started doing the following:
We are so proud of Will for working hard to meet his goals. It is so important the he learn to listen and play quietly. I know that one day we will be able to attend structured activities, but I also realize that it will probably never be Will's favorite and that is OKAY. I like that he enjoys life on the run. Let me start off by saying that my kid is awesome. I love every bit of him - all of the beautiful, funny, loving and frustrating bits of him.
In February of this year, at the urging of Will's preschool teachers, we had Will tested for developmental delays. We learned that Will has a speech delay in both receptive and expressive language as well as cognitive and social delays. Over time we have also come to understand that Will has a possible sensory processing disorder which will be evaluated by a developmental pediatrician in September. We have been so fortunate to have the love and support of our friends and family but also the helpers who have been placed in our lives. God is good and He provides. Will's preschool teachers, pediatrician, Sunday school teachers and many more have encouraged, loved and supported Will over the last year. His therapists put forth a tremendous amount of effort to understand him, know him and create plans that will help him succeed. We truly have a great set of helpers. Any parent though with a child who faces a disorder, disease, delay, anything really that makes their child "different" knows the feeling of isolation and uncertainty for both child and parent. Developmental delays and especially sensory issues are often hard to explain and understand. The behaviors that result from these issues often characterize kids as undisciplined, bad, slow learners and unwilling. Will does and doesn't do many things that most people would find odd. I'm sure there are many times we have gone out in public that others are wondering "why is that kid doing that?" or "why is that kid so out of control?" Many people have never given any thought to the fact that not all children are "normal" in the sense that not all children follow the same developmental path. I was definitely one of those people before Will was evaluated. As Will gets older, I am starting to deal with misunderstanding regarding his behavior, which is why I want to help others understand and be sensitive to these issues. My son does not need special treatment. He simply needs to be understood, accepted and loved for who he is. He will likely struggle with sensory issues all of his life, but I refuse to let them define him. If you ask my grandma who she thinks Will looks like, she will tell you he looks like Will. The same is true for every other aspect of his life. Will is neither "different" nor "normal." Will is not "Will with delays" nor "Will without delays." Will is simply just Will. |
Charming, quirky and incredibly loving. Will loves his friends, swimming, the iPad, the Avett Brothers, observing the world upside down, climbing, jumping and being chased.
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