Apologies for no blogging for a bit, we have had a horrible winter in regards to health! It feels like we have had every infection/disease possible, and today has been the first time all kids have slept through the night, had no medical appointments and that we haven’t spent our entire income at the pharmacy (leap for joy)! So why does my body feel deathly tired? It might take some getting used to if it continues!
This week has been one that has hurt my brain, so much information to process and make decisions on. My husband has had extra-long hours at work, and the reality of domestic duties and the time that they take has set in. I feel like if I did nothing else but housework and cooking I still might never get on top of it all! My eldest is going through a growth spurt and wants to constantly eat, that middle child of mine only wants bananas and cheese sticks and now the toddler has found that wonderful independent will where the answer to everything is NO followed by a tantrum….
Also this week the OT made a suggestion that we try the “brushing technique” which is to help train the neural pathways in kids with SID/SPD and provide the sensory feedback the brain is desperately seeking. Apparently some kids have a great response to it and some it’s entirely unhelpful for. But considering Beau’s deep physical pressure seeking activities (getting his big brother to throw basket ball’s at his face, banging his head on the trampoline and falling off objects on purpose) it might really help. I start feeling hopeful after hearing the possible benefits until I hear the time requirements- every 2 hours during the day for 4 weeks by the same person. Um say what now? EVERY 2 hours? By me? So I have been mental preparing myself for the commitment and how it might work.
As well as investigating this therapy, my wonderful Aunt gave me a book to read called “Healing the New Childhood Epidemics: Autism, ADHD, Asthma and Allergies”. It’s about a doctor in the US who has had complete recovers from the four A’s, all of which my kids seem to have to varying degrees. Reading the story at the start was a bit emotional in that it was so close to my experience. But the book does provide hope, with a dietary and supplementation method for giving your child’s body the best chance at restoring nutritional balance and helping brain neural transmission and thus improving behavior and health.
But it all seems too hard! The recommendation is to start with a gluten and casein free diet- so no wheat or dairy ouch. It’s amazing to look at what our kids eat, almost all of their favourite food has a combination of the two! I know its going to be tough but I feel I must give it a go- what have we got to lose, our kids are worth it!
So this week our family embarks on a new season, trying to find gluten and dairy free products and recipes. Please help me out with any tried and tested recipes- I’ll let you know how it goes! (The pic to the right is a wheat and dairy free quiche I attempted last night.... while the kids did eat it my pastry recipe will need some adjusting it was so gross!)
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!
Well today I gave up on school pick up. Yep I’m not volunteering for that again. I’ve tried 100 different ways to manage that middle child of mine with varying levels of success, but he keeps changing and what works one day does not always work the next.
So I parked the car and got out the pram, baby and then Beau jumped out and ran up on to the pavement and straight into the café across the walkway and into the staff area in the back. Argh.
I retrieve a non-respondent child by scooping him up and carrying him out apologizing to the staff. I have words with Beau and then turn my back to retrieve my bag from the car only to repeat the process. This time he has ran further into the staff area and is banging on a fish tank and loudly protests when I physically remove him.
I’m deep breathing to control the anger at the direct disobedience and start walking AWAY from the café quickly. Every 3 steps Beau steps on the pram brakes and causes the left hand side to come to a skidding halt and the baby to jerk forward. Blood pressure rising.
Now at the school Beau decides to go on a kicking frenzy. The school hall is packed with students coming out of class rooms, parents and teachers. He kicks a classroom door so it makes such a loud bang everyone gets a fright and turns around, he kicks an unsuspecting school child, a bag and the front wheel of a pram going in the other direction…. more apologies.
Before I can grab him he is all of a sudden up the wall! Perching like spider man on the top of the bag hooks defying physics and gravity. I get the giggles, he looks hysterical, he is wearing slipper socks on his hands and feet (they are fluffy and soft) which are brightly coloured and stripped and he is just so out of place poised up the wall while everyone is busy around him. Deep breathing. I extract him (good thing he weighs nothing) and return him to the ground.
Before I can catch him he is in Noah’s class room tipping out the boxes of readers, the books scoot all over the floor… Noah is trying to show me his work and as I ignore all the books on the ground and spare a glance at Noah’s school work I hear a cry from another student as Beau is hanging from the 3D shape made out of straws displayed in the classroom (another child’s prized handiwork). Intervention- I grab Beau and swing him up on my back and leave the pram for Noah to push as I beeline to get out of there. He is wrapped to be on my back and held tightly and seems to settle until I realize he has managed to kick another child from his new height on my back- I suddenly feel overwhelmed at the scenario, and my inability to control my child. I fight back the tears and get out of the corridor and welcome the freezing breeze outside.
As I carefully consider my spoken words, I choose not to spout out angry hurtful language and ask for some divine intervention. As Beau settles down when the audio and visual stimuli dissipate the thought pops in my head- I think Noah is old enough to do the pick up where he waits near the designated car park area and we all stay in the car. It’s time. All of a sudden the need to entrust the older child with some more responsibility is necessary right now, and with that new responsibility comes a sliver of hope for the school pick up tomorrow and each day after that.
Today was a challenge. I had a sick baby who didn’t know what he wanted. After a sleepless night I had an overtired winey clingy toddler that foiled every attempt I made to get anything done today. On top of that I had the mischief maker (that middle child of mine) in full effect.
During the time it took me to change a nappy Beau moved a chair over to the bench, climbed up, reached on the top of the fridge, grabbed the children’s multivitamins and ate about half a jar.
While I was attempting to cut the toddlers hair, Beau snatched the scissors and had a few chops at his own hair.
While I put washing in the machine he got up on his brother’s bed, peed on it and then covered it in baby powder. After stripping him off his wet clothes with no explanation for the deliberate wee on his brother’s bed I clean him down and leave him to get dressed. After a few quiet minutes I check on him only to find some lovely artwork on his bed frame and multiple bits of paper all done while he is completely naked.
That was before he managed to open the window in his room (that was locked) and jump out of his window (big drop to the ground) and give me a fright when he knocked on the door from the outside, before the hair cutting incident and also before sneaking a mouthful of marshmallow’s from my secret stash in the pantry, and before he covered a section of his polished floorboards in stickers.
The stickers were also removed from an illegally opened letter that was sitting on the bench containing a birthday card awaiting the return home from school from his older brother- how do I explain that one?
And that was all before lunch. I’m not even going to write about his behavior at the maternal child health nurse and doc appointment in the arvo- sigh coffee anyone?
Just had ANOTHER one of those days, where I really wonder if God made a mistake, in allowing me the responsibility to raise 3 boys, you know those days where you feel like a failure in the parenting department?
It started off with a parent teacher interview the night before…. “Yes your child might be genius in math BUT his behavior could be improved…. did he tell you about what happened the other day? No? Really because he told me he discussed it with you and you said ……” So the next morning I had to oversee his apology and reconciliation with the child and teacher which is always just so much fun. Then in the afternoon I pick up that middle child of mine from daycare only to be pulled aside by the teacher “I just want to draw your attention to an incident that happened today…..” and so we prepare another lot of sorry cards and apologies and discussions about the right way to behave.
I lose my temper I get frustrated and I am tired. I ask God: why did you entrust these amazing children to me? I don’t seem to have enough knowledge, wisdom or patience to teach them righteous living?
But then he gently reassures me through timely prayer from a friend, an encouraging sms out of the blue, a call from a sister, a package in the mail containing a special book and being held by my husband. Everything will be ok. Every ‘incident’ is an opportunity to teach and grow, and there is hope in the scripture “He has showered his kindness on us, along with all wisdom and understanding” (Eph 1v8) and I am grateful yet again for the privilege to do life with those boys of mine.