This isn't my blog, it's Zack's. Zack arrived here seven weeks early, he had no heartbeat and wasn't breathing. He suffered catastrophic damage to his brain, he has cerebral palsy, problems with his hearing, vision and feeding. Our lives are both challenging and extraordinary. He is a gift. I hope that for whatever reason you find yourself reading this blog it can go some way to help those in the same situation and some way to remove the cloak that covers parenting a child with disabilities.
Here's a pop quiz. When does a theatre show for people with PMLD (Profound and Multiple Learning Difficulties) not allow people with PMLD to come along? When it gets it's promotion and booking system completely and utterly ballsed up, that's when!
I don't get to take Zack to anything special that's suitable just for him and his needs very often. Don't get me wrong, he still joins in with all the family fun and activities but the majority of it isn't very suited to his needs.
When I saw a little tweet about a show called Home specifically targeted at an audience for people with PMLD I had to get tickets.
The touring theatre company had shows running at the Lowry so myself and a couple of Zack's friends agreed we would go to the Saturday showing in March as I was advised that this had the most seats available to accommodate our numbers.
All booked, all sorted, and three happy mummy's looking forward to taking their children to a special show.
Four days later I get an email from the Lowry Theatre to contact them as a matter of urgency. It turns out that whoever booked our tickets had over-sold the show and in particular over-sold the seat number to those audience members in wheelchairs.
Oh yes. Despite my statement to the booking lady asking if there is enough room for three wheelchair users and she telling me yes, it turns out each performance can only accommodate six wheelchair uses.
A show that if you read the advertising blurb states it is specifically for people with PMLD but can only accommodate six wheelchair users at a time.
So lets get this straight our children are now not being allowed to go to a show catering for their needs because of their disabilities. Oh dear Lord.
No, no, no, no, no. Needless to say I strongly stated how disappointed I was and how it was unacceptable and all the rest of it. Twenty minutes later and another phone call the production company have very kindly managed to accommodate us, adapting the show so that we can come along with our wheelchairs.
Oh, thank you. That's very good of you and we are grateful, miffed off, but grateful. I'm hoping after all the fuss I caused that Zack doesn't decide it's not for him and kicks off big time during show time.
Here I am again. Quicker for you as we have been blog absent for almost a year but The Pants turns eight today.
Eight amazing years of having the divine fortune to have this boy as my son. And we are very fortunate. Even after eight years have past in the blink of an eye I still remember his birth as though it were yesterday. But that cold, hard beginning has lead to peace and happiness. That's not to say it's always glorious, no, it is very tough and relentless but it is etched with utter pure love. And so I am faced again with balloons and presents and cake for a son who is eight. A son who is eight and has never spoken one comprehensible word to me, or ran to me, or held me, or kissed me. But strangely with him I don't need all of that, his eight years represents fight and strength and presence. Look at him and you feel peace. Isn't that what we all need?
Once upon a time there was a little girl with beautiful deep blue eyes and golden hair who loved to dance. She practiced once a week until her teacher said you are ready now to take your first exam. The little girl was nervous and unsure but she tried her best. And after a long wait she received her results, 87%. A distinction. She was overjoyed. Meanwhile a little boy with beautiful green brown eyes and a mop of dark curly hair, rocked up home one day on the taxi. He had his usual look of disdain on his face, when asked how his day was the look he gave was meh. And so began the routine of unclipping him from his chair for the little boy could not walk, nor could he talk. After he was settled on the settee, his mummy set about checking his school book to see what message was being relayed back to her from his teacher. Out of his yellow school book fell a blue and red certificate. His mummy picked up the certificate and grinned, grinning and marching over to her handsome son. "What's this?" she wafted the card in from of his face. "What's this?" The boy looked at her, stuck his tongue forwarded smiled and made his duuuuuggggghhhh sound. As I said earlier in the story, the boy cannot talk so I will translate. "That? Oh that. Yeah that's just something I got awarded today from school. Just, you know, a headteachers award for good head holding and sitting up." His mummy looked at him, as proud as she had looked at her daughter. He had done something amazing and it had been recognised. And whilst the two awards were poles apart they both had meaning. Both accomplishments had taken practice, practice and more practice. Perfecting techniques, training, and trying very hard. What comes naturally to the dancer, what comes naturally to us all. To hold our head, to sit independently, is a daily grind for the boy. But he is getting better and better at it. So yes, his award too is pretty special. His mummy ruffled his head, kissed him and told him how amazingly brilliant he was. Then a little a head popped up from behind the couch, leaned over to the boy and said: "I got a distinction in my ballet exam you know. 87%. Whoohooo." Yes you did little girl. Yes you did. You both deserve a very big whoohoo.
What to do, what to do. Birthdays, they are getting harder. What do you get a little boy with cerebral palsy now that he is almost eight years old? It's not like I can pop to the toy shop and pick up the latest must have or a spot of lego. No, it takes a lot of thinking. The main toy/present buying requirements fall into several tick boxes 1. is it noisy 2. does it light up 3. does it vibrate 4. is it something he can put his hands into. I don't think these things when buying for Scarlett, I just think are there 100 little bits to this toy that are going to end up all over the floor and stuck in the hoover (that usually equates to nope not buying that). Talking of small bits I almost bought both of them that new toy called Bunchems. Looks really good. Little sticky ball things that you can shape into all sorts of creations. Oooooh yes, both kids would like that, Zack especially as it's all feely sensory kind of stuff. I thought I was on a winner until I saw this warning.......
Yep. That is the picture of some little child who got a raft of these things stuck in her hair. Given that 1. Scarlett continuously has her long hair flowing free and 2. Zack has the most incredible mop of curly hair on the planet this could only lead to disaster.
I am still tempted though.....actually, no. There are youtube videos of instructions in how to remove these things from hair.
Well, back to the drawing board. So far we have figured Zack likes Star Wars and Iron Man. Cue new Storm Trooper that makes sounds and noises whenever you move him and a Noctobat. I also have plans to purchase a bell ringing set and triangle. See above checklist.....noise.
You see it is hard especially when he can't say mum could I have a new iPhone instead of that crap bat thing you've got me. So I carry on second guessing and believing that what we buy him ticks the sensory boxes and makes the birthday boy happy. Failing all of the above I know a cuddle for about two hours would make him just as happy so who is the fool.
I am sat in the lounge looking at a pile of presents, balloons and banners with seven written on them. Seven. Seven years have gone by and I cannot fathom how fast that has happened. Nor can I understand the deep love I feel for a little boy who has never uttered one word to me. Nor ever hugged or kissed me. How can I feel such a profound connection? It goes to prove that in order to love someone deeply you don't need words it is profound. More significant than what can be shared or felt from one person to another. I only have to look into his eyes and he only has to look into mine and smile and I know. I know that he has been my most significant catalyst for change and the most significant event in my life. He is seven and he is moving forward, never backwards. Always progressing at his own pace and in his own time. In the past two years he has altered and is more engaged and aware than previous years. I am very proud of him, I am in awe of him and I am blessed to have him in my life. Happy birthday Zack. My wonderful son. My boy. My love.