So we’re one week into 2016 and Christmas is already a distant memory. The new year is a time that many reflect on their lives, what has passed in the year before, and what they want to do going forward. Goals are set, resolutions made, and they’re all forgotten before the end of January!
It’s no surprise. January is a cold, dark miserable month, Christmas is over, and there’s few reasons to be cheerful
In the past, I’ve been guilty of doing the same. This year has to be different.
Looking back at last year I think the kindest way to describe it is it was like a rollercoaster.
There were some high points, often quickly followed by some real lows, but I’m determined that this year is going to be our best yet.
So, I’m going to focus on the positives, 3 lessons I learned about Jude and Tommy towards the end of the year, and how they can make our lives better this year.
1. Jude needs more sensory activities integrated into his routine
The weekends can be difficult at times to find activities that Jude will enjoy outside of being with us in the house, especially now it is winter. A couple of months ago we discovered a sensory room for hire that is only a 45-minute drive away from where we live and finding it has been a godsend. There are 2 rooms that we can hire privately for an hour each week, and spend some real quality time with him. His level of interaction and eye contact is so much higher when he’s in a relaxed state, which he slips into within minutes of entering the room.
The first room has a projector that projects games onto an interactive mat on the floor. By moving around on the mat, you activate the games such as kicking a ball, popping balloons, etc. For Jude these games are very stimulating and exciting, so we spend 10-15 minutes in here each week.
The second room is all about lights, sound and touch. There’s a huge vibrating beanbag to lie back on whilst soothing music is played. There’s different mood lighting, a huge bubble lamp, a projector, and an interactive cushion keyboard that makes different sounds and lights up depending on which pad you press. This is where we spend the most time, and can get some real one on one playing time.
He has a sensory room at school that we knew he loved, but finding this place has meant we have a little outing each weekend to look forward to. He’s been in such a good mood when we come out of there we have even managed to sit in the café for 5 minutes (alright he did have an ice cream), but that is something we would never usually even attempt.
This term at school Jude has also been having a massage once a week at school, with the idea being to get him into a better state of mind for learning. Just before Christmas, the school sent us a video to show how he was getting on, and it was amazing.
For ½ an hour he stayed in this small room, sitting or lying on some cushions, and let this lady massage his back, head, arms and legs. More than that, it was really apparent that he’d built such a good relationship with this woman. He was giving her lots of eye contact, listening to her requests, and vocalising throughout in an attempt to communicate. It really hit home just how important a sensory diet is for Jude, and how we really need to do more of this to help him.
So weekly visits to the sensory room, an increase in sensory toys available to him at home, and more use of pressure and movement are all key to his happiness, we need to make sure he gets them.
2. Be Brave! Try different activities with Tommy
So, just before Christmas, Tommy joined the rugby club.
If I’m honest it’s not something I felt he was ready for, but thanks to the encouragement of Victoria (who helps look after they boys) he’s been 3 times so far and loves it.
He’s not necessarily listening fully to what the coaches are saying, he’s not really interacting with the other children, but he’s running around with a huge smile on his face and having fun. He’s learning how to throw and catch (already breaking stuff in the house) taking part in team games, and learning how to integrate with others.
Having coached football and tennis to kids his age for many years, this was always one of the things I was really looking forward to once I became a dad. I went to watch him at the last session before Christmas, and about 10 minutes in he spotted me on the side, stopped what he was doing, came running over to me and gave me a big hug, then ran back off into the game. Remembering I was in a public place, I fought back the tears that automatically come to my eyes whenever either Tommy or Jude do something and carried on watching as if nothing had happened!
There are still people out there who believe autistic people are incapable of showing love, so if any of you are reading, there’s just one more example for you of how wrong you can be.
The lesson I’ve learned is that I have to help Tommy and Jude push their boundaries, and not be afraid to fail all the time.
On the flip side, in between Christmas and New Year Tommy was invited to a birthday party of a friend’s son who Tommy has grown up with. It wasn’t a disaster as such, but it was clear that it was too much for Tommy on that day. It was in a hall with about 20 other children, and the noise and sensory overload was just too much. Tommy spent the first 15 minutes in my arms refusing to get down. When he did eventually warm up, he much preferred to play out in the hall, away from the other children. Most of the next 45 minutes were spent out here, until for the 3rd or 4th time Tommy led me to the door and thrust my hand to open it.
Parties like this throw up a mixture of feelings. A combination of feeling like you should try (because if you don’t try you’ll never know), and guilt that you’ve put your child in a situation he clearly isn’t enjoying. You want to try because you feel like it’s the ‘normal’ thing to do. You want to see your friends, and you want Tommy to enjoy himself with the other children. When it doesn’t go to plan a nagging voice says in your mind “I could have told you so” and you wonder why you tried to put him through it.
However, if I kept that attitude Tommy would never have started rugby lessons, and I would never have seen him running around the park with such a huge smile on his face
So, being aware of Tommy’s sensory needs, but still pushing him to try new experiences is my goal for this year. He may not always like what we try, and that’s ok, but slowly pushing him outside of his comfort zone, when he’s ready, will be good for him.
3. Spend more time outside with Jude & Tommy
Throughout the Christmas holidays, I was going on an hour long walk every day with Jude which he loved. Being winter time the river is pretty quiet, so there’s lots of space, and very few children around to worry him. Once we’d get to a certain section where he felt comfortable he’d pick up the pace and sprint away, laughing the whole time. I say sprint, Jude doesn’t really run, it’s much more of a gallop. He finds it hilarious to run off in front, looking over his shoulder every now and again to make sure I’m chasing close behind.
He’s fascinated by everything around him, from the sea wall to the grass, the stones, to the puddles. Jude scans and takes everything in we pass along the way. Doing the walk at night is a whole other sensory experience that he really seems to enjoy too. The dark skies, broken by the minimal streetlights that illuminate the river combined with the peace and quiet seem to create the perfect sensory environment for him to enjoy. It might be cold, it might be windy, it might be wet, but with the right clothes, ear defenders, and a rucksack, there’s no reason we can’t do this all year round.
*Note to self – Going on said walk/gallop at 9 pm on Christmas Day after a 5 course meal and a bottle of wine is probably not the best time to go
It’s not just Jude, Tommy loves it too. A long walk along the sea wall, with the chance to run and jump around freely, is his idea of heaven. Tommy is oblivious to anyone else around him on the walk and is 100mph all of the time. Unless of course a dog comes along, which sends him hurtling back into my arms. The excitement they both get just from being outside is clear for all to see, and this simple act has produced some of our happiest times over the last few months.
So, 3 reasons to be cheerful going into 2016!
Finding time for sensory play each and every day for both boys is so important.
Pushing their boundaries whilst being respectful of their wants and needs, and always mindful of the sensory impact it may have on them.
Finally, getting outside as much as possible even if it is wet and cold.
The more the boys are in a relaxed and happy state of mind, the easier it will be for them to progress and learn, so that’s what I’m going to focus on this year