Party blues

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.

 

 

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23 thoughts on “Party blues

  1. bloggermummylauren

    Don’t be too hard on yourself about this, you really are not at fault here at all. For a start, the invitation should have made it clear this was a sports party, because like you say not all children are in to that, and the whole thing could have been avoided.
    It’s awful that no one even said hello to your wee man, I just don’t understand people at all, how is it acceptable, and to be so reluctant to talk to you… I don’t see why boo having cf should change the way people treat you, they don’t sound like very nice people.

    This post has really touched me, i don’t really know how to reply but I couldn’t leave without saying something xx

    Reply
    1. mrboosmum Post author

      Thank you for reading and leaving such a lovely comment. I keep thinking my totally typocal 6 going on 16 year old would have hated this party at that age too. I can see it was great fun for some kids but not all. I don’t think parents meant to be unkind. I think they just didn’t know what to say to us… Thanks again xx

      Reply
  2. Kim

    I hurt for you reading this. And you fully sum up why I’m not so keen on parties either. Nothing is more painful than seeing a room full of your childs peers and the reality of their differences hitting you in the face.
    But please don’t forget how amazing Boo is, those children did not fight for their place on this earth. If only we could all get together and have a party for those who did!

    Reply
    1. mrboosmum Post author

      What a lovely comment. Thank you so much. I love that phrase about our kids fighting for their place on this earth. Boy did they? And I love even more the idea of a party for them. Thanks so much.

      Reply
  3. mummyshambles

    Oh lovely 😦
    I’m in tears for you!
    My son is autistic and his problems are sensory and socially.
    I have had no choice but to knock back every party invitation up to now because I know he isn’t able to tolerate the stimulus that comes with parties. But it’s not been an easy decision to make. One one hand, I don’t want him to miss out on things like that. On the other, the result of giving him such stimulus for even the shortest time, ends in aggression and meltdown and when he does attend his first party, (which will happen one day), I want it to be a positive experience for him.
    As you’ve pointed out – children are far more accepting of differences than adults. One mother stopped talking to me on finding out that S had been diagnosed with autism – she doesn’t want her daughter to play with him. It hurts but that’s life. People are ignorant of the facts.
    I started off by making excuses for every invitation but now I tell them the truth.
    We can’t expect everybody to understand our children like we do.
    That said, we need to be fair.
    I would tell them if my child had food allergies.
    I would tell them if my child had other special requirements.
    So I would definitely make them aware of his autism.
    As a parent, I would prefer to know in advance so that I could adapt the party. Maybe she felt bad because she didn’t have that opportunity?
    Maybe it would have been the case that she couldn’t have changed things but at least you would have known in advance what the party entailed and been able to make your decision based on that.
    I do understand where you are coming from and I do feel for you.
    Big hugs lovely X

    Reply
    1. mrboosmum Post author

      Thank you for such a lovely comment. I totally understand what you are saying. I should have let her know. I thought she did, as nursery said she did, but also didn’t want to make her feel awkward. But of course, you would say. My kids are vegetarian. I always mention that. I so hope your son gets to his first party soon and that it is a great experience for you all. xx

      Reply
  4. Annabelle

    I feel hugely for you. I have CP and work with children with CP professionally and all I can say is that I am shocked and appalled by the the way that you and Boo were treated. So shocked I don’t really know what to say other than sending you a big virtual hug and try to assure you that you did the right thing. x

    Reply
  5. Lucas James

    Oh sweetie – I would hug you (if I lived near you and knew who you were!).
    Sounds to me like that mum really wasn’t very prepared for any kids, not just Boo. I know how much that hurts, and I’ve had those same thoughts about including and excluding and do I need to flag him up or not. It may not be the same for Boo but at Smiler’s (special) school they have a birthday party in school in the afternoon when it is any child (or staff’s) birthday. Music, games, dancing, parachute games – whatever will be an enjoyable celebration for that child and their friends. It’s not the same, I know, but better than nothing, and as he got bigger I found less and less other parents were prepared to bring their child to a parent organised party. Space is an issue too – we’re in a bungalow and there’s really not many child plus wheelchair plus parent groupings we can fit in our living room!
    I hope a bit of a cry and maybe some sleep has helped you feel better, and I wish I could assure you that it will never happen again but you and I both live in the real world. The o only advice I have is to not take responsibility for that mums awkwardness – it’s not up to you to make her feel better. I don’t mean be all out rude, but don’t feel you have to stay and feel crap just to make her feel better – I know you said Boo had fun but you have to put your own needs a little higher on the list sometimes – you shouldn’t be at the bottom!
    We hit that accessibility wall a long time ago with Smiler, and I’ll never forget being asked not to come back to a baby/toddler group because Smiler was making the other parents uncomfortable – he was ten months old and lay on the floor, and I joined him in with songs etc – very upsetting for the other parents I’m sure. You’ll never forget this experience but I hope it gets dulled a bit by other happier parties – the farm party sounds promising!
    Hope you know that you’re not alone with this – I for one am usually around on twitter if you need to blow off some steam, and I’ve always found it helps to let it out to people who really have been there before themselves. Hope you’re feeling a bit better now.
    Take care
    Lucas

    Reply
  6. skemperoony

    Wish I could meet up wth you sooner than it looks like we will.
    So much I want to say to you, but it’s probably better face to face.
    Never forget that there are others (like me) sharing (in part – we are all unique) this ‘different reality’ with our fab children. I have drawn huge comfort from parents of children with SEN, who ‘get’ the frustrations and the (occasional/frequent) sense of isolation.
    Let’s get a date to meet, am away for a week from Friday.
    Sent with love, Sarah x

    Reply
  7. Stacie Lewis (@MamaLewisBlog)

    Sounds awful. I completely avoid these situations, um, always. You tried it out and managed it the best you could. Don’t blame yourself! I wish people were more accommodating but clearly many people do not know what to do when someone disabled arrives and they have planned everything down to its smallest detail. But surely, she could have come up with something that he could have joined in. Some game? Some relay where you could have pushed him in his buggy? She was the host, not you.

    Reply
  8. laura

    Omg, how awful for both of you. I’m so sorry. I hope this is not a sign of things to come 😦 I would be heartbroken as well.

    Agree the mom should have been more clear in the description of the party, and should have attempted to include him in some way (having the kids run by to give him high fives?). Ugh.

    If you were in the US you guys would be so invited to our 1yo/3yo party! I was thinking of hiring one of those mobile petting zoo things…

    Reply
    1. mrboosmum Post author

      No – I’m sure it won’t be. Partly I wrote the post so others wouldn’t be as dumb as me! A mobile petting zoo sounds fabulous. The other party invite we accepted (before we went to this one) was to a local farm where you can pet animals and there’s a soft play area. I think that’s perfect for Boo. Thanks so much for commenting.

      Reply
  9. lydiaunicorn

    My daughter is still a baby but this exact party and your story is the scenario that keeps me awake at night. I have this dementedly un-integrative dream where I gather a bunch of other families with special needs kids and we all live in a fully accessible yet secluded neighborhood where we go to each other’s bday parties and every house has a ramp and you just don’t even have to think about it you know? It is just so darn easy and everyone gets where you are coming from. Sometimes I don’t want to be different or to fight to prove that we belong. I just want to live my life with my beautiful family and not worry about it all the time. If one more person comments on how ‘sleepy’ my daughter is I’m going to explode! Sorry, you got me venting. I love your writing and I love your blog. At least I have you in my community ‘out there.’ Thank you.

    Reply
    1. mrboosmum Post author

      Goodness. I know just what you mean. Part of me wanted to say after this party, never again. No more non-special needs parties for us. I just want us to live our lives without Boo’s disability being an issue (for other people, that is).

      And I love your dream party. Wouldn’t that be great? But it’s sadly so unreal, isn’t it? I want to keep Boo from pain and hurt, but I know that he and we have to live in the big wide world, where inclusivity is often more buzzword than reality.

      Honestly, I think that blogging and chatting to readers and other blogger like yourself here or Twitter or Facebook is the only thing that keeps me sane. Our community may be a virtual one, but it’s no less real for that. Thank you, too.

      Reply
  10. Leigh Kendall

    I’m so sorry this happened. Please don’t be hard on yourself, you do such an amazing job and it’s not your fault at all. Those parents who wouldn’t talk to you and Boo are rude – there’s simply no excuse. I’ve experienced similar behaviour, but for a different reason – people often don’t know how to react when I say my baby died – I try to excuse it, saying that surely they didn’t mean to be mean and they didn’t know what to say – but it’s difficult when you’re on the receiving end, and the one made to feel awkward when nothing you have done is wrong. Sending hugs xxx

    Reply
    1. mrboosmum Post author

      It is. I honestly try very hard to try to understand where people are coming from when they say things that upset me. And I know many people would be mortified if they knew how upset their comments have made me but I also am losing patience with trying to make other people feel better about our life. I don’t want people’s pity. There is nothing to pity us for. But understanding is priceless. Thank you. xx

      Reply
  11. Victoria Welton

    This must have been so truly awful for you, I really do feel for you. Whenever my sister has had, or been to a party with Elliott I am always impressed with how she takes it in her stride, protects her son and makes sure that the people accept him as he is or it is their problem. Believe me, this is THEIR problem and not yours. I am shocked at how narrow-minded people still are in this day and age, You can do this, and so can Boo. Thank you for linking to PoCoLo 🙂 xx

    Reply
  12. Deb Whittemore

    I am so sorry this happened. My heart was breaking reading your post…I have a son with autism and while today he can somewhat “blend in” (he’s 6), when he was younger, it was really hard. There were times we avoided parties…other times I did tell people upfront. I think it’s always best to do, just as an FYI, not because you are demanding any kind of special treatment. It is so sad the kids just see the person, and it’s the parents who see the disability. Hugs and prayers to you that your next experience is a better one and that people are more knowledgeable, caring, and compassionate.

    Reply
    1. mrboosmum Post author

      Thank you for such a lovely comment. I will definitely say next time. The kids’ attitudes towards Boo was lovely to see. I am holding on to that.

      Reply
  13. ht

    Wow – a very moving post. I’m sure this day is in our future too, but somehow reading about someone else going through it makes it a little less scary.

    Reply

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