So I’m feeling down. Just had a shocker of a morning getting all the boys ready and off to school and kinder, and feeling disappointed at my lack of self-control and patience. Angry, loud, infuriating and frustrating are the words that describe this morning. Despite the measures I have put into place with helping Beau and his SI issues, nothing ever works all the time, and what works once doesn’t always work again. He keeps changing and seems to be as fickle as the wind.
So now with a quiet house, a cup of coffee, some deep breathing and meditation I press the re-set button. I read my Bible and ask God to tell me what next. There seem to be too many options, too many choices and a severe lack of energy and will to do anything on my behalf.
I started to read through Proverbs 22 and came across verse 6 “Teach your children to choose the right path, and when they are older, they will remain upon it.” I guess that’s the hope of every parent, that the time we invest into teaching, discipline and loving them will help them choose the right path in the future.
I also felt God say to list all the successes, and things I'm grateful for. So I decided to write down some of the things that have worked or helped with Beau and his SI issues. Little things that have made a difference in organising the many messages his brain receives, so here goes;
The ‘special wobbly seat’ otherwise known as a dura disc, used in physiotherapy rehab/Pilates or strength training. Beau ALWAYS falls (deliberately) off his chair at dinner time. The task of sitting still and eating is just too hard. But sitting on the dura disk provides his body with constant feedback to balance and adjust his body in tiny movements that satisfy his brain’s need to keep moving and allow him to stay on his seat and attempt to eat. Incredible!
Visual cards. On our fridge are a heap of cards with pictures of Beau doing things or of specific objects like his shoes. When I want him to put his shoes on, I give him the card with the picture of his shoes on it, so on the way to his room he gets reminded of what he is doing and is more likely to actually put his shoes on.
Noise cancelation head phones. Beau is over-sensitive to audio stimuli and finds Noah’s basketball game a real challenge. There are whistles, sirens, eco and general basketball game noise and its loud. A loud busy environment makes all his senses go crazy, he wants to yell and scream, and crash and run and general chaos follows. But with head phones to cut out the noise, his hoodie on over his head to cut out some visual, and playing games on my iPhone to keep his hands busy while listening to the audio of the story or angry birds game and he is able to cope and enjoy the time.
Leg weights and backpacks. Beau is under-sensitive to deep touch. This makes him crash in to people and objects, push/pull/jump/throw/fall/dive into anything to feel the feedback of that deep muscular pressure his brain so desires. This makes many things difficult. One thing that drives me absolutely mad is having him walk next to me with the pram. He pulls on the pram tipping it over, he kicks the wheels and puts on the pram brakes every two steps. Using weighted objects like toys, vests, etc. can help provide his brain with that deep pressure, so the OT recommended trying leg weights, to wrap around his ankles and a weighted vest while walking from the car to the school and back. Well weighted vests are a little tricky to get my hands on so we tried a backpack with some books and water bottles (ie heavy objects) in it. The leg weights were amazing! He loved wearing them and I walked to the school and back without one kick to the pram or brakes on or anything! Just blown away by the difference in his behaviour with the addition of some weight.
Soft socks. Beau is over-sensitive to light touch. So he is very aware of how his clothes feel. If his socks are scratchy he takes of his shoes and socks (repeatedly). If his jeans have buttons on the inside that dig in he gets upset. Acknowledging his clothes preferences and thinking about how things feel when getting him dressed makes a world of difference.
Deep muscular pressure and vestibular exercises before bed. We now have an evening routine that helps Beau be able to settle enough to sleep. He does some wheelbarrow walking on his hands up and back down the hallway knocking over bowling pins, some tight squeezes and some tipping him upside down and swinging him around. He lies on his tummy on the ground and I roll a fitball on top of him pressing down and squashing him or paddling on the back of the ball to get a vibration going on etc. He calms down, he lies in bed and goes to sleep (well it does increase the chances!).
I could keep going this is just a few of the things that have really helped. Its powerful listing the positives, it has made me acknowledge the amount of work my husband and I do to parent this middle child of ours, as well as see the improvements, celebrate the successes and see how far we have come. I'm so grateful for a child that is as special as him, and I'm so grateful for the help from the medical professionals, and family that have made it all possible! I'm also grateful for the words of encouragement that really help get through the day, from a friend’s prayer and word “that the things I do in the mundane, daily routine things are just as important as the big things” to my husband’s affirmation and loving care. Thank you precious people in my life your investment is helping both myself and my children along the journey of choose the right path!