Tag Archives: SEN siblings

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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Good News Friday #54-57

I’ve been neglecting Good News Friday for a few weeks. It’s not because we haven’t had any. Far from it. It’s just that some of it – Boo learning to sit for longer and longer each week and the final emergence of that gorgeous word ‘Mum’ – have been so awesome that frankly I have had to write them up into whole posts, and I have run out of time for GNF.

So by way of a catch-up, and from somewhere inside the cyclone of our lives, here are some of the highlights of the past few weeks:

1) Sissyboo: What an awesome monkey she is turning out to be in a I’m-fabulous-but-I-am-also-six-and-therefore-maddening-and-know-everything kind of way. Her year 1 teacher left at Easter, which made Sissyboo, who is forced to deal with lots of change in her life on a regular basis,quite sad.

But in typical Sissyboo style, after bursting into tears in assembly when the announcement was made, and then spending the evening writing up an illustrated petition from all of her classmates to persuade her teacher to stay (which made her cry) she has taken everything in her stride. Her new teacher is now the best teacher in the world and Sissyboo continues to be very happy at school.

She has also managed to completely amaze me in the last few weeks and has reduced me to tears several times. Most spectacularly, this shy little girl (under whose modest exterior a secret exhibitionist lies) took part in a dance show, doing three different routines, in three dance styles in three constumes on a proper stage earlier in the month. OK, she didn’t remember every move. But the joy in her face was absolutely infectious and the confidence she displayed is something I couldn’t have mustered at her age and that I think any of her nursery teachers would struggle to believe she could ever have gained. Like her brother, she likes to surprise people.

And she has surprised me regularly over the past few weeks. I’ve made no secret on the blog that this anniversary season (from Boo’s birthday until the date 11 weeks later when he was supposed to be born) is hard on me. I am also a bit overwhelmed at the moment by a ridiculous workload and Boo battles on every front, it seems. I am exhausted and it shows, even though I try not to let it. Sissyboo doesn’t make a fuss about it or embarrass me by showing me she knows, but every week since Boo’s birthday in early April, she has left me odd little home-made badges with little messages on, or pictures telling me what an amazing mummy I am.

Yesterday, she drew a picture of her and me in a space rocket. It was accompanied by these words: ‘Mummy, you are amazing and my hero. I love you so much it wood take us up to spase’. Spelling isn’t her strong point. Compassion and empathy most certainly are. This is one amazingly lucky Mummy.

2. Nursery has successfully transitioned into nursery room. This means that for the first time since he started at nursery, he is with kids his own age and some nearly 12 months older. Of course, he can’t access activities without support or run around with his new friends. But he can hold his own and is happy. The kids look after him, bringing him toys and books while he is in his chair or playing games with him on his standing frame. It is amazing to watch. His former keyworker in his previous room is a big loss for Boo and us, but luckily she is staying on as Boo’s SENCO and is being very hands on, which is lovely. She said to me the other day that Boo’s absence from his old room has left a crater and the kids were really sad for the first two days and kept calling for Boo! Apparently they had to take some of them down to the garden to see him as they were worried he had disappeared…

3. Kit I finally have some cutlery (after finally getting some advice in an ‘urgent’ appointment with the OT about various things that was 3 months overdue) that I think might take the fight out of mealtimes. Boo can’t feed himself without hand over hand or elbow support as his arms won’t reliably raise to his mouth and even if they do he can’t twist his wrist to get the food off. His solution is to take his head to the spoon, fork, or plate. He’s not that bothered how he gets his food as long as he gets it. He is determined to feed himself and has started to refuse food at home and nursery if we feed him. Anyway, so now we have some lovely plastic curved cutlery and some great scooping/high sided plates which I think might be just the thing. I’ll let you know.

4. Running I am in training for a half marathon in September to raise money for an organisation that has helped us a lot since Boo’s birth. I am very time poor, unfit and my back is not in a good state. But this week, so far, I have somehow managed two 5 mile runs. I can’t say they were easy or even felt that good, but it was terrific to clear that hurdle and I am determined to do this. I have also raised several hunderd pounds already in just a few days!

And finally in good news:

5. Boo just keeps going from strength to strength. Yesterday in Portage he tried, unprompted, to say ‘tiger’ and said ‘bear’, ‘up’, ‘o’ for ‘go’ and the pet name the kids give to my Dad. If he says it to my Dad this weekend I predict gallons of tears. Oh and very excitingly, we have a walker on loan to try. It’s very early days, but expect a post on that soon…

So over to you. I hope you have lots of good news in your life and would love to hear it in the comments below.

Love

Mrboosmum

Time to talk…

This weekend was bookended by two conversations that just a  couple of years ago I never imagined I would ever have to have. I was nervous as anything for both of them and I am so glad they are behind me, even though their repercussions are going to preoccupy us for a long time to come.

On Friday I took Boo to see his consultant to get his test results. Yes, these are the tests we had in June, the ones where the results were sent to the hospital in July and I found out by accident 6 weeks later. Results that I had read out to me on the phone by another consultant after breaking down uncontrollably on the phone to Boo’s consultant’s secretary, begging her to get someone to phone me to pass on the information they were sitting on, pointing out that it was immoral to withhold information about my child (information that could tell me if he’s got a life-threatening illness).

Four months after the tests, three since the results were sent to his consultant, I sat down and was talked through the full results.

I was dreading it. I wasn’t dreading being told my child has cerebral palsy. I know that. I’ve known that for much longer than I have publicly admitted. But I was dreading the scrupulous detail the report would contain and which will make no difference to Boo’s treatment. I couldn’t bear the dwelling on things that couldn’t be changed. I’ve done too  much of that. And I was feeling awkward about having to sit in a room with a consultant after making a formal complaint about the results debacle.

In the end it was fine. I was offered a box of tissues, but didn’t need them. I wasn’t being brave. It’s just I’ve cried those tears. There are plenty left. Just not for a diagnosis. I accepted that a long time ago. The consultant agreed that the small genetic imbalance they found is a red herring and that there is no point in The Grumposaur or me getting tested at this point, although Sissyboo might want to in the future if she wants kids. And the urine test that wasn’t done quickly enough (and which I hadn’t yet taken the 3-hour round drive to get done again) wasn’t worth doing, he said. ‘If Boo had what they are testing for there he’d already be dead’, I was told somewhat bluntly. Always a silver lining, right?

The MRI told us nothing we didn’t already know. Boo was born early but healthy. He was unlucky (I wish people would stop saying that to us). He got meningitis post-delivery and had a massive brain bleed. It isn’t my fault. It wasn’t any one’s fault. The words ‘severe brain damage’ aren’t my favourite three little words, but aren’t nearly as harrowing as the brain scan images I saw when he was a couple of months old. The images speak much more profoundly than any words on a page. And when I turned back to Boo after reading those words and he smiled at me and said ‘Hiya’, I was reminded of something else that I already knew. ‘Severe brain damage’ means a lot of things, but it tells you very little about our beautiful Boo and his winning personality.

The rest of the conversation went well. Lots of talk about his educational needs and so forth and I left feeling oddly relieved, positive and set for the road ahead. Not so The Grumposaur but that’s not a story for the blog.

It also gave us the resolve to have another conversation. With Sissyboo. Now was the time to tell her, we thought. Tell her that her brother not being able to sit or walk like her friends’ younger siblings is not just (or even at all, as it turns out) about the fact he arrived 11 weeks early. It has a name: cerebral palsy.

I realise some people reading this might not think we did the right thing in telling her at this tender age. She’s not quite 6. It’s a lot to put to a young child. I know.

I share those reservations but as people have said to me at least 100 times since Boo was born, there’s no manual for situations like this. There are books – wonderful books – introducing children to various disabilities or illnesses that might affect their family members. But I haven’t seen one for cerebral palsy. Maybe I’ll write one, one day.

But if people say ‘Why tell her?’ my response is ‘Why not?’ You see so many aspects of Sissyboo’s are already saturated by CP. When her I turn on the telly or sets up a craft to occupy her so I can squeeze in some exercises for Boo. When I have to take her to the school breakfast club so I can take Boo to an appointment. The books with cerebral palsy I borrowed from the library and which I have hidden, because I know she if she finds them, she will sound out the words in her best year one phonics and want to know what they mean. When he goes to hug her (he does this a lot) and he accidentally bashes her in the face because his arms don’t go where he wants them to. When her friend’s 9 month sister comes round and despite being half her brother’s age can cruise on furniture and crawl.

She is not daft. She knows her brother is not like everyone else’s. And she needs answers too.

Of course the cerebral palsy label doesn’t give them. Not to the important questions. To her. To us.

‘Will he go to my school?’ ‘Will he need a wheelchair?’

But it does provide a way of answering the one question we don’t ask but everyone else who doesn’t already know Boo does: ‘Why is he different?’  Now she can answer: ‘Cerebral palsy’. It’s a conversation stopper. And she needs the label to be able to achieve that.

Between ourselves, however, ‘cerebral palsy’ is a conversation starter, a means of opening up the host of questions I know she has about her brother. It’s a licence to ask those questions. She needs that, too.

So when we sat down to lunch yesterday, we told her. The Grumposaur started by asking her if she remembered that Boo had to go to London to have some tests done a few months ago. He explained that we’d had the results and that all the really nasty things that they might have found were found not to be there. Boo was healthy. But Boo had problems.

‘You remember when he was really ill in the hospital just after he was born? Well that illness has left Boo with some problems called cerebral palsy.’

‘What’s that?’ she said.

‘Well, you know that Boo struggles to control his muscles and move in particular ways, that’s cerebral palsy’, I said. ‘It makes things we do easily, like sitting or feeding ourselves or moving about very hard. But it doesn’t mean he won’t be able to learn these things. He might not learn them all. We just don’t know. But we can help him to do as many of those as possible, by just doing all the things we are doing – loving him, playing with him, reading to him, doing his physio.’

I can’t give you the rest of the conversation in detail. It’s too hard to recount. I can’t remember it all. But she was unfazed. She asked the questions we have asked people: ‘Will he walk?’ ‘Will it stop him doing things?’ And she asked those same questions partly because we have been partly infantilised by all of this, turned into helpless children, asking the doctors like a vulnerable infant asks their parents to assure them everything will be alright.

But as she asked these same child-like questions, I was struck by how very grown-up Sissyboo was. You see before we had time to respond, she already had answers. ‘Will he walk? Oh, [she is smiling now] he might need a wheelchair mightn’t he? Daddy, did you see the videos of wheelchair basketball on Youtube?’ ‘Will it stop him doing thing? Actually, Mummy, it won’t because we will just make things happen for him. And he’s very determined, my brother.’ (Well, he has a great sister to teach him these things, I thought…)

We talked about lots of other things. And she hugged her brother and messed about with him by pulling faces and making him giggle uncontrollably as we spoke.  Then we asked her if she had any questions. She said she didn’t, but she did have a story to tell.

The story was a fabrication. Sissyboo doesn’t lie very much by 5-year-old standards, but she does make up imaginary scenarios involving fictional people from time to time. It’s clearly a way of her asking questions she doesn’t know how to ask, or solving problems she can’t work out in other ways. I suppose it’s the 5-year-old equivalent of the teenager who tells her mum she has a friend with this problem, rather than admit the problem is her own.

She told us about a fictional couple where the Dad has CP (in the course of the conversation we’d told her that the husband of someone she knows – a dad, who can drive, has kids and is therefore the epitome of normal in her mind has CP) and the Mum then divorces him because she is worried that any kids they have might catch CP. Now, there’s a whole bunch of stuff here I’m not minded to analyse for you, but she was clearly worried that CP might be passed on genetically, or more pressingly, that it was contagious. It wasn’t that she thought it was catching, because, it turns out, she knew it wasn’t; but she was worried that others might think it was, and she wanted strategies for dealing with their ignorance.

She was also clearly worried that people would ostracise Boo as he grows up. They will, I thought, but we have to teach him not to let it bother him. That’s a conversation for another day. Because this is the first of many, of course.

I know it will take time for the words, and their slippery meanings to percolate her consciousness as they have mine. And I know that some days she will be fine about it and others she will feel confused, sad and as if the world is a hostile place that has to endured rather than lived in. I know, because she is my daughter.

But I am so proud of Sissyboo. I am so proud that while we talked through stuff no child should have to hear about a sibling, she looked at her brother and in the face of the words, she saw beyond them them to a little boy she loves more than anything else in the world. A little boy with a happy life ahead of him if she has anything to do with it.

I am proud because her question about the fictional family shows that her first thought was for Boo and his feelings not for her own (important though they are – and I don’t forget about them). In her mind, this is happening to her brother. There was no ego here. No prejudice. Just a beautiful young person’s love for her sibling.

I have two wonderful and beautiful kids. So please, consultants and medical professionals, don’t call me unlucky. That’s one label that just doesn’t stick.