I was very nervous about yesterday. Very. But everyone told me it would be OK.
It wasn’t. It really wasn’t.
No one is to blame but me. I messed up. And it has me in a tailspin. I haven’t felt so sad in a long while.
The occasion for all this sadness? A party. A kid’s birthday party.
You see a few weeks ago, Boo got his first ever invite to a birthday party that wasn’t a celebration for family or a close family friend. He recently moved into the nursery room at his daycare (that could occasion about 20 separate blog posts, but I won’t go into details now). Some of those kids are turning 3 now and are about to go into preschool. Boo, of course, was 2 in April, or really 2 last month. He won’t move into preschool for at least another 9 months.
When I got the party invitation in his nursery bag, I felt so happy. He had made friends. A child wanted him to go to their party. They had included him. It was another milestone in his life. It would be fun.
And then I got real. Hang on. This is a nursery invite. This is an invite from parents who, like me, work. All of us pick up and drop off at different times. Boo is dropped off after many other kids are and picked up before lots so we can do his therapies and spend time with him. I realised that the parents probably invited every child in the room. They might not know what Boo looked like and least of all that he has cerebral palsy. They might not know they were inviting a child to their son’s party who could only sit for short periods in one position, who couldn’t walk and who was speech delayed.
Did that matter, I wondered? Boo had been to parties before. We had always just adapted things. Like at the party of one of Sissyboo’s friend’s siblings, who also turned 3 recently. Boo danced, played musical bumps with me helping, played pass the parcel, with some assistance and decorated his party bag with the help of his big sister and some other big girls who wanted to help him. He had a great time.
I looked hard at the invite. Maybe I shouldn’t take him. Maybe I should make an excuse to avoid any awkwardness.
Wait, hang on. Was I actively excluding my child? Crikey, if I exclude Boo from activities what hope does the rest of life hold? No, he’d been invited and the little boy whose party it was told me one morning at drop off how pleased he was his friend Boo could come.
And it was at a sports centre. I knew there was a soft play there. Sissyboo had been to parties there. It was a nice soft play, much nicer during parties than in the general free for all. Not so busy, better for Boo. This could be fun. I could get to meet the other parents in the new room. Tell them about Boo, if they wanted to know. (I know people talk about him. I know they think silly things, rumours I could good-humouredly dispel.)
But I should probably tell the Mum he has CP, right, when I texted (the modern way to do parties) to say he could come? I mentioned my worries to nursery. They said not to be silly. Everyone knew Boo had CP.
And when I thought about telling her some more I started to worry that if I did so, she might think I was asking her to do something about it. I know it’s your son’s party but have you thought enough about mine? Have you ensured your party is fully accessible? Of course, I didn’t think that or want her to think I thought that.
I didn’t want to give her anything else to worry about or make her feel she needed to do anything to accommodate Boo. Parties are stressful enough, I know. I asked some friends. They said not to say. Nursery said the other parents knew anyway (the standing frame and Bee chair that have been in the nursery room for the past 2 months are a pretty big clue a non-typical child has moved in). And Boo loves soft play. We’d join in as we could and not make a fuss.
And so we went.
When we got there, I was directed to a room in the opposite direction from the soft play. I started to worry. Crikey what sort of party was this going to be? I pushed Boo through the door in his adapted buggy as others ran past him and breathed sigh of relief when I saw a bouncy castle and small inflatable soft play area. Boo would love this. Great.
And then we approached the Mum. She couldn’t conceal the look of surprise and confusion when she saw me push Boo in. She clearly had no idea he had CP. Her eyes showed clearly that she wondered what was wrong with him. Trust me, I’ve seen that look before. Quite often. I decided not to say anything and just get on with the party.
Lots of kids called Boo’s name and waved at him and talked to him, in between running between the two inflatables. I bounced him up and down and he was having fun.
For the first 5 minutes. And then the two 16-year-old party hosts called all the kids over and asked them to sit on a crash mat. Um no. Not for us. OK, what’s coming I thought? Boo looked at me wondering what was going on.
And then we learned we were at a sports party. There were going to be running races, obstacle courses, relays etc for 90 minutes. Children would have to jump onto vaults, walk on up-turned benches, balance on beams, jump and run. Everything Boo can’t do. The children were told to march to the door and go outside (great I hadn’t bought sun cream or a hat either – neither had any parents, it turned out). Oh crap, I thought, what do I do?
I had to explain to the Mum. I went over and her look of concern was now grave. She had obviously asked another parent why that child was bouncing on the bouncy castle on his back next to his mum and not running around with the rest of the kids. Evidently, she had been told the reason.
I said that I was sorry, I thought she knew and I had misunderstood the nature of the party. I’d wrongly assumed it was a soft play party. I said with my best inane smile and stiff upper lip (yes: I know that’s a contradiction in terms) that Boo wouldn’t be able to join in the activities, but no matter. Sadly, the bouncy castle and indoor inflatables had been turned off so we couldn’t use those. I said he would go and watch his friends for a bit but we might leave early.
She said she wished I’d told her. She felt awful that I hadn’t. If only I’d told her, she added.
And so I felt awful. Not only did I have to confront (again) the extent of what my lovely, amazing little boy can’t do, but I had to feel bad for ruining a kid’s party by taking a child who couldn’t participate.
But if I had told her, how could that have changed things? I can’t imagine she would have said he’s no longer invited don’t bring him. It would have created stress and hassle for her. This was a totally inaccessible, unadaptable party. I can’t see what accommodations could have been made.
The 16-year-old girls running it looked at Boo like he was an alien from another planet when they dared to make eye contact with him at all. They wouldn’t have known how to involve him and if I had tried to drag him round the obstacle course, and my back had held up, then the party would have turned out to be all about Boo. That wouldn’t have been right.
The mum begged me not to take Boo home from the party early as it would make her feel bad. I fought back the tears.
Honestly, I say this without a shred of self pity. I am the least important person in my life. My feelings are always at the bottom of my list. But yesterday something inside me was screaming that I wanted to look after my feelings for once. Not hers. I wanted to go. It was all so awful. To confront his difference so painfully.
But I did what I always did and made some woman I don’t know feel alright by sitting on the floor next to Boo in his buggy in horrible humidity while he watched his friends do things he will likely never be able to do. All I wanted to do was come home,
I tried to make small talk with other parents. We never got past a sentence. Some made cringingly obvious excuses. It was awful.
I have never felt like such a pariah before. They didn’t know what to do with us. But what hurt more was that with one exception, a lovely Mum who has invited Boo to her son’s party at a farm next month, none of them even said hi to Boo. The kids love him. That was clear. The parents don’t know what to do with him. That was clearer still.
That 90 minutes felt like many hours. Boo was OK. If he had been distressed or upset I would have brought him home in a heartbeat. But I can’t honestly say he had fun.
When I collected Boo’s party bag we were thanked for coming, but the look of discomfort on the Mum’s face was palpable. I think we messed up her big day. Just by showing up. That hurts. Let me tell you. It really, physically hurts in the pit of my stomach.
Please don’t get me wrong. I mean what I say. I feel that I messed up. No one else. I will think twice about accepting party invites for Boo again and will try to talk to parents beforehand in a way that doesn’t make it feel like I am asking for special consideration for Boo. I don’t want to spoil other people’s big days, but as Boo gets older and more aware I want to protect him from such experiences. I don’t want him to feel sad or unwelcome or a pain.
It was so hard. In the cold light of day, I can see that this was a party that was tough on lots of children. It was too hot to be running around outside without hats and suncream (we had been told it was an indoor party). Some kids (as Sissyboo would have been at that age) were very shy and didn’t join in with this mini-Olympics at all. Others were a bit too tottery on their feet and one hurt himself. (It turned out the party organisers thought the birthday boy and most of his friends were 4!) Boo wasn’t the only one who found joining in hard.
But he couldn’t join in at all. That’s an important difference.
This is the first time I have ever hit the inaccessibility wall. I have never been in a place or situation where we couldn’t adapt things so that Boo got lots out of the experience. This is the first time I have seen absolute exclusion in operation. And it frightened me. Really frightened me.
Is this what being in mainstream school would be like for him? Is this what his life will be like?
No: I am not having it. I am NOT. Boo was not born to sit and watch other people do things. He is a bright, sociable, funny and talented human being. He is born to do things, great things even. I know it. I just know it.
Sad as I am today, and I think I have wept more typing this post than any I have every written for this blog, I will never forget that. Never.