I can't believe it has been over a week since my last post. The time has really flown; we have been busy building this year's gingerbread creation for the Enchanted Forest (post coming soon!) and we have been physically, mentally and emotionally spending time figuring out what SPD is.
Let me back up....
For years, we have been frustrated by some of Eli's behavior. We have never expected him to be perfectly well-behaved all the time or even to be wonderfully happy all the time. We have wanted to offer him the security he needs, boundaries he craves, and acceptance and love for who he is. But, for a while, we have felt that we were doing something wrong in the behavior department and, at times, have felt overwhelmed by the feeling of helplessness. When he was 2 and 3, we accepted his tantrums and outbursts as part of the "terrible twos" and asserting his independence as pretty age appropriate. After we learned about his sinuses closing up, his severe allergies, and chronic sinus infections, we attributed some behavior issues to him just not ever feeling very good. But, the older he has gotten and the more we interact with other boys his age and observe how they cope, the more we noticed that Eli's behavior seemed atypical; his tantrums can be LONG and very intense, unpredictable at times, very predictable other times, and he was becoming more and more anxious in social situations. It was time for us to admit we needed help...
We made an appointment with our pediatrician. Just Tim and me to talk with her about Eli's behavior. We weren't looking at all for a diagnosis; just thinking she would know a behavior plan that may work better than what we have been doing. Explaining our expectations for him, stickers, rewards, consequences were all wearing us out....and were having no lasting effect. The week before we met, I began taking notes on what was happening with his tantrums. I began to see just how prevalent they were and just how much I was "walking on eggshells" in many situations. I began to see on the paper just how frequent the outbursts were and how much we had just gotten used to them thinking that was normal.
Dr. Lana listened as we described what was going on, then she asked a number of questions. It was so strange to sit there and answer "yes, he does that, yes, he does that, too" to these random questions. It was as if she had been living in our home. She said she thought he might have "Sensory Processing Disorder" and that there is therapy and help for kids with this disorder. Wow - we were blown away. We couldn't believe what she was saying.... there was more to this than just a strong will that we could not bend. Some things that she pieced together pointed her to SPD:
knock-down drag outs to brush teeth (not so much for the past year, but until he was four, it was TERRIBLE!), same for hair cuts, and trimming nails. Those issues have all gotten better, but when we met with the doctor, these things were still happening: tantrum if the sun shone in his eyes in the car, screaming and running off if he was surprised by a loud noise, extreme discomfort with strong odors, fights daily to get dressed, very difficult time transitioning from one place to another, frequent tantrums leaving places, tantrums not getting his way (all kids, right? - but his were INTENSE!), tantrums when things didn't go the way he thought they would go, hated wearing shoes and socks, fights to pick out new shoes, difficulty waking up from a nap in a content mood, waking during the night and VERY early waking in the morning, constantly puts things in his mouth, hates to be lifted up high above your head/on your shoulders, hates to be tipped over backwards/hang upside down, until very recently only wanted to swing in a swing that had a baby seat, gets anxious around new people, he cries easily, and when he has these tantrums he wants to climb on me and hold me tight as if he cannot get close enough. As a result, Dr. Lana referred us to an Occupational Therapist. We saw her two weeks later, and she confirmed that Eli does have SPD - a mild form; he is able to function, but these issues definitely interfere with his daily routine and social interactions.
We have felt for so long that many people never saw "the real Eli." He is such a loving, funny, thoughtful, compassionate, great kid. We've been so sad thinking that his tantrums were all that many people saw of him. We were eager and willing to do whatever we needed to do to help him feel more comfortable in our world.
We have learned a great deal in the past few weeks. It was a week ago Friday that we saw Ms. Cathy, our OT. So, it's been about 11 days - I cannot tell you the change we have seen in Eli in 11 days. She gave us a good deal of things to try at home to help satisfy his need for "sensory input," a sensory diet, they call it. The main thing is something called the "Wilbarger Protocol." This is "deep pressure" brushing on his arms, legs, feet, hands and back. She gave us a therapy brush that we brush firmly over his skin every two hours during the day. Following the brushing, you do "Joint Compressions." This is where you hold two of his joints and push them together: eg: Hold his elbow with one hand and do a handshake with my other hand holding his wrist firmly and push the handshake in towards his elbow. Very hard to describe, but very easy and quick to do. The whole thing takes about 5 minutes. And, it has worked! We are still learning how it works, but it causes a neurological reaction.... In the past 11 days, he has had maybe 4 tantrums TOTAL! He plays much more cooperatively with his sisters, he handles "no" better and is able to transition a little better, too. Things are in no way perfect, nor do we want/expect that. But, we are thrilled that he seems happier, more easy going, and is able to enjoy life more. He has not had any behavior issues at school at all. He is only there three days a week for half days... I think had we not found this help, he would have been exhibiting more behavioral problems at school come first grade (all day, every day school). However, his teacher did comment last week (after only 4 days of therapeutic stuff at home) that he was more focused, participated more and was more engaged in the activities.
We went back to the OT this past Friday and she gave us some cd's for "therapeutic listening" program. He listens to a cd with headphones on for 30 minutes twice a day. He can play, read a book, eat, ride in a car, etc. while he is listening. This is supposed to build the muscles in his inner ear and thus effect his "vestibular system" - balance, etc. She thinks his constant ear and sinus problems contributed to this piece of his SPD. Already, we are seeing even more progress....
We still have so much to learn and understand, but we are so thankful for what we know now. Over the weekend, I can't tell you how many times Tim and I looked at each other and said, "Wow, this would have looked so different 3 weeks ago!" We went to a family day at the local art museum. They had several art activities for the kids. Eli participated and even asked several of the volunteers for things he needed to complete his project. We had no tantrum issues at all! Honestly, I teared up and equate it to the first time Madeline was able to participate in a birthday party by eating birthday cake (after much feeding therapy!). We were all able to enjoy and revel in those simple moments that didn't used to be so simple!
OK, I've written a book here; I just wanted to fill you in on what has been happening around here. Nothing short of life changing, that's for sure!
