The hardest juggling act of all

And for my next trick…

Yep: like all parents, I spend a lot of time juggling. Heck, I spend a lot of time blogging about juggling. And guilt. Let’s not forget the guilt. And of course, these things are intimately related. A huge chunk of the knotty mass of guilt I feel on a pretty much daily basis originates in my feeling that I am a poor juggler. That I don’t get the balance right in my respective responsibilities as Mum, carer, advocate for Boo, partner, employee, and colleague. That I let people down on a regular basis, including myself, but especially my kids.

If you read this blog regularly, you would be forgive for thinking that the hardest circle to square is the working mum/parent-carer one. I wrestle with it daily and the moment it is pretty all consuming. But it’s not the hardest juggle of all. Not by a long way.

The hardest is being Mum to two children, one of whom has extreme and complex additional needs and one who does not.

Sissyboo is just about the best sister anyone could have. Boo is incredibly (there just isn’t a word hyperbolic enough to describe this) lucky to have her in his life. I watch their relationship develop with intense pride and amazement. Her life was as much turned upside down by Boo’s early arrival and all that came with it as anyone else’s and all of this happened in the year she started school.

Cerebral palsy doesn’t faze her. In fact, she is very knowledgeable about it. She has started to question the world around her, the policies and prejudices that affect her little brother’s life. She instinctively, now, notes the accessibility (of often otherwise) of places we visit and clocks lifts and accessible toilets sometimes before I do on trips out. She has the best stare for non-blue badge holders who park in disabled parking spaces because they are in a hurry that I have ever seen. She helps with Boo’s therapies. She makes him sticker charts and buys him presents with her pocket money entirely off her own bat if he hits a new inchstone. She reads to him and plays with him. She forgives him if his wayward arms whack her round the face accidentally or if he pulls her hair.

And mostly, she just loves him. Unconditionally. As I do her.

She may not realise it at the moment, but she has given up a lot for him. Time with me, days out, days without worry. And I worry so much about her missing out.

You see, Boo’s needs will always be the most immediate. He can’t do a thing (except watch TV) without adult support. And she is nearly seven. So when it comes to the two hours before bed what do I do? Shoehorn in as much therapy as possible for Boo? Goodness knows he needs it. And then what to do when Sissyboo asks me to do Hama beads with her? What about when she needs help with her homework and he is screaming because he is uncomfortable and needs stretching or otherwise stimulating because he can’t just get up and walk to the toys he wants to play with.

Sissyboo does after school clubs most days. This is partly because I work, but it is also so I can fit a bit more therapy time into Boo’s day as he doesn’t get enough 1:1 support at nursery. And I don’t feel good about paying someone else to look after my daughter so I can do therapy with my son. Not at all.

Nor do I feel totally OK with all days out having to be geared up around her brother’s needs. Of course, I want him to be as happy as possible and like to be prepared wherever we go, but I hate, for her sake, that so many days out turn out to be about what we can and can’t do with Boo. The only way to avoid this is to split our family of 4 into 2 families of 2, not always practical, and not at all what any of us wants.

We used to have a volunteer from the wonderful Homestart come and help us out for 2 hours a week. Boo was well looked after and I had 2 hours a week with my lovely girl. We used to do crafts or make cakes or watch a movie. That ended 10 months ago now and we both still miss it enormously. I try to take her swimming on my own once a week (like I take her brother on his own once a week too, although she has to come watch). I let her stay up a bit late on Fridays and Saturdays and help me make dinner and do crafts. I plan odd days out with just her. These are so much fun.

But I’m still not used to this. I wish I could get the balance right. I wish I could be sure I was doing enough to support her through school and just being nearly 7. But I can’t. When push comes to shove, Boo often has to come first. He can’t help it. It’s just the way it is. I just hope she grows up not minding. I hope she grows up knowing how amazing she is and how very, very proud I am of her.

If you have any tips on how to juggle the needs of siblings with different needs, I would love to hear from you. This one really has me stumped.

 

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5 thoughts on “The hardest juggling act of all

  1. itssmallsworld

    You’re not the only one to struggle with this. If that helps :-). We used to use the gap between school and nursery finishing to sometimes do things with Big and, here it is again, respite has helped us spend time too. I’ve recently discovered something called Somerset Supporters who come to do what home start did. I just wonder if there’s something similar near you? X

    Reply
  2. lookingforbluesky

    I’ve never tried this and working full time – I’ve always been part time since Smiley was born. But I did always make sure that Angel knew that I was going to extra mile for her: whether it was bringing the two littlies up to the gym in their PJs at 9pm to collect her or helping her enjoy all the invitations to take part in photoshoots, film premieres and other events from my work in PR. Hope you do find some volunteer help, that sounds like an ideal solution x

    Reply
  3. Complicated Gorgeousness

    It is hard isn’t it. I am desperate to do this too. My big boy is so chilled and calm that I think he will be the one easiest lost in all this if I am not careful. I have a very demanding 6 year old who gets lots of attention but perhaps not the right sort of time. Juggling and muddling through as best I can over here too so have no advice xx

    Reply
  4. aint3113

    By far one of the hardest parts of all “this” – I agree. Not only does the other sibling not get enough of our time, but it seems the rest of the world isn’t interested in them. On my personal FB I’ve noticed that if I post a picture of Owen (my mp) it normally gets 100+ likes. Kellen’s pictures get 1/2 that. I’ve heard so many people say – “Oh don’t worry about Kellen, Kids are resilient’. A PTSD and Anxiety dx at 4 and no one wants to hear it still. What works is kid and family specific, but a few things that we’ve done. 1) The older sibling goes to therapy. It’s play therapy, they don’t probe, but give him a safe environment to act out some of his thoughts with toys. 2) For as long as we could, we put Owen to bed a full hour before Kellen and we named that time hour “Kellen Hour” 3) As he’s gotten older (he’s 5.75) we talk directly about it with him. 4) Lot’s of “Dates” w/ mom and/or dad. The one on one time when Owen isn’t invited is his favorite. Again, it still doesn’t feel like enough, but those are a few of the things we’ve done to try to make Kellen feel like he’s a priority for us too.

    Reply
    1. mrboosmum Post author

      Hi Tatum. We do 2), but I’m not good at keeping it as quality time. Naming it is a great idea! And we try to do the dates, but we need more. I don’t know what to do about 1). I wish there were some play therapy here (maybe there is and I just don’t know about it) but there are young carer associations. Not sure what they’re like, though. I also hear the ‘kids bounce back’ type thing all the time and I find it hard to take sometimes. Yes, mostly she is fine, but it is also a front too. I know because she is her mother’s daughter. She just deserves so much more. Just as Kellen does. Oh and I, for one, have always loved seeing pics of Kellen and Owen on your blog FB page. Thanks so much for the comment. Hope you’re all doing well.

      Reply

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