A New Year

We coped well this year. I’m guessing we have learnt from previous years in terms of what can trigger anxiety so now we just roll with our Christmas festivities offering lots of choices and keeping demands very low.  We have learnt to always be conscious of our child’s sensory profile, it is there and hasn’t vanished for Christmas time.

The Christmas term at school this year felt positive, I had a good feeling about the Christmas show and felt reassured that I wasn’t going to be the only parent in the hall that had a child that may want to run off stage. Our son felt confident and his whole self-esteem has lifted since changing setting. My son was asked if he would like to do a reading at the Christmas play, he was asked 2 days before the play to keep his anxiety at bay.  At the show, I sat on the edge of my seat, trying to wave at him, bobbing up and down to catch his attention so he knew where I was. I could see him looking around for me. At his old mainstream I would be asked to sit right at the front to catch him when he has had enough, but this time I took a seat like a “normal” parent when he caught a glimpse of me and turned around to smile.

The show consisted of a choir who sang Christmas songs and everyone clapped when each song had finished. In between the songs, a pupil would perform a reading. Each time a song or reading ended I saw my sons arms lifting to cover his ears, he knew the clapping would start. I hoped he would cope through the noise, the hall was busy with a total of 200 people inside. He was sitting at the front right next to the choir, which was quite some noise for him to cope with. Then the clapping would start and I thought it would only be a matter of time before he would explode. After nearly an hour it was my son’s turn to do a reading. Inside me, I felt relieved he had managed to cope so far, I just prayed inside that he would be able to manage his reading. Walking up onto the stage he stood standing on his tiptoes slightly so his mouth could just reach the microphone,  he is the smallest boy in the school. A deep breath, his shoulders went back, he stood proud and tall. His reading was clear, loud and fluid with not one blip and he nailed it. I looked at him and smiled with a thumbs up as he walked back to his seat, nudging the gent next to me to tell him,  “That’s my boy.”  He replied, “Great reader, he’s a good lad I see him around school, he’s a good un.” It was so refreshing to hear. In the past, my child was given one sentence to read and then he would be quickly ushered to his seat. He was given a “part” because they knew he had to be included somehow. This time people saw his strengths.

Throughout the show, I could see his difficulties. The hall was way too busy for him to handle, being placed too close to the choir then the noise of 200 clapping hands. His reading being pushed to the end could have stretched his abilities too far.

I could see his colour drain as he sat back into his seat after his reading. The show was over, I quickly ran over to his seat crouching down in front of him to see if he was ok.  “No mummy, I feel sick.” No one seemed to pick up on this as the staff were busy concentrating on getting the children back to class where a family buffet was laid on.  The buffet would be taking it to the next level, I just needed to leave with my boy as he had coped well but was at the edge of coping.

Sat in the car, happy, content but kind of glad it was over, he was a success and I was super proud of him as always  “Mummy, I feel better now, that was a busy hall with lots of people in, I think I just felt sick because of how busy it was.” He was right.

Christmas and the change that takes place in one’s home can be huge for a child with autism or PDA and simple things that may appear normal like putting a Christmas tree up, decorations hung or furniture being moved from the ordinary space is all change. I have been blessed that our child enjoys decorating the home, although I’m cautious to make it enjoyable. We have a dining room to decorate, living room and snug. We decorate a room a day with our child choosing which room he wishes to do so first.

This year was the first year that we decided to give our son his favourite meal for Christmas dinner. A roast dinner has to be one of our son’s least favourite meals, vegetables and potatoes with no gravy! I asked him what he fancied to eat to which his reply was mac and cheese with garlic bread! We went with that and had a wonderful dinner with close family that knew our child’s Nintendo Switch tablet was sat in close proximity and didn’t bat an eyelid. In fact, we are used to having a child at the dinner table with a tablet in front of his face, but this time around it was different as he sat and engaged with the adults around him and smiled.

Christmas day is a family day, right? We should all be sat together enjoying each others company? Not for us, if our child feels the need to sit in another room, we allow it. We had guests around, even though the guests were grandma and her partner, it’s still different and our child will join in when he wants to. Making no demands keeps his anxiety at bay.

Not always can we get it perfect and sometimes just sometimes something may happen, we had one blip just before our guests were arriving for Christmas dinner. Brothers being brothers, excitement in the air, they were playing on a new game they had received, it took one knock from his brother’s elbow and BANG! Spencer was in full meltdown. Even with anxiety kept a bay, sadly his older brother was going to be at blame, who knows what the trigger was, but I won’t say it was nothing. Christmas morning can be hectic – the unwrapping of presents, our child this year even mentioned that he was looking forward to watching everyone open their presents. This seemed a huge step when normally life seems to only consist of himself, it made me happy that he seemed to want to share the happiness of someone else’s feelings when he struggles daily with his own. His older brother has learnt to keep it calm and he apologised for knocking his arm. He has had to grow an old head on his young 17-year shoulders although I can tell it can be hard for him. Just before our guests were arriving I had our child running around the house screaming that it wasn’t his fault. I look out of the window, see the car pull up and panic, they were about to enter a house full of uproar and chaos. We speak to our son in a calm singing tone to bring him back to reality – no one is angry or upset, as fast as that he tells me he is ok, let’s forget that happened mummy! Phew … we nailed it just in time! Christmas this year was the best so far, I believe it’s because we’ve learnt more and understand more. We appreciate that every day is never a normal day and something, anything could happen so our expectations of how a Christmas should be is completely different to others. But as long as it works for us then that’s all that counts.

The bit for us that has been the hardest is the “now” bit. Everything is over, Christmas and the build up, our child has been expecting the change and bracing himself, but now its time to go back to school.

We’ve been facing a few issues at his placement which has been causing our child discomfort and raising his anxiety. I fear for this term, I feel it, I have a gut feeling that it’s going to be hard. I’m wondering if my child can feel my anxiety building up, but I’m trying my best to put my happy face on and reassure him that all will work out in the end. I feel another battle coming on.

Boxing day is when the questions started to be asked: “Mummy when do I go back to school?” Not for a little while longer, we look at the calendar and count how many days. “Another 13 days sweetheart lots of time still at home, stop worrying.” Each day that has passed I can feel my body tense. It’s like there is a storm ahead for us. Time will tell.



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