Now she's 4 years old we are experiencing a new set of questions on top of the usual ones. The main one is something the parent's never ask, they are too embarrassed. But kids spot it and ask their mums...."Why is that little girl STILL wearing a nappy!?!"
We just started a swimming class and there's one big changing room where all the kids change. They are all 4 years old, Caitlin is the only child still wearing a nappy. I could ask could we change in a different area but I don't want to exclude her. She has nothing to be ashamed of and so this question can't be avoided. Kids have it drummed into them while they are being potty trained..."Only babies wear a nappy, your a big boy/girl now so you have to start using the toilet." Parents don't consider the child who may not be able to wear pants when they teach their children that only babies wear nappies. I'm not angry about that, it's the way of the world and if I'm honest I probably wouldn't have thought twice about telling Caitlin the same thing during potty training, had she not had spina bifida. Only babies wear nappies is something that rolls off the tongue for most parent's, particularly as an incentive to potty train them! But now I can see the implications of teaching this to my kids and I try to be very careful choosing my words with both my girls.
At the swimming class today one of the girls asked her mummy why Caitlin was wearing a nappy. To which the mum got flustered and told her to stop being so nosy. The little girl protested, "But Mummy, she's a big girl and big girls don't wear nappies!" The mum give her a glare and the child knew that it was time to stop talking.
A little boy in the changing rooms was staring and pointing at the scar on Caitlin's back. Another little girl saw me putting her splints on her legs and stared intently and I knew she wanted to ask why she had them.
Caitlin didn't seem to notice and said nothing about any of it. I hate to say it but I said nothing either. I just froze, not knowing what to say so smiled instead. I should have took the opportunity to explain simply to the little girl that Caitlin needs some help going to the toilet but I knew her mum was embarrassed and I couldn't find the words. I mean, how do I explain to a 4 year old that Caitlin has spina bifida which means her bowel and bladder nerves don't send messages to the brain telling Caitlin she needs to go to the toilet?? A 4 year old wouldn't understand that. The same thing happened with the scar and the splints. I need to work on explaining things to children - and to their parents. I don't want children not wanting to be friends with Caitlin because no one will answer their questions as there is then the risk they will see her as strange or odd or different. I guess in her school now, as it's a school for children with physical disabilities, Caitlin has been protected from the ignorance of the world. A part of me wants to keep her protected but I can't do that forever. She is a strong, capable and determined child and I think that will hold her in good stead when she begins mainstream school in September. But I would be lying if I said I wasn't afraid of her becoming isolated in a new school, a new class with more physically able peers. Her therapists, the educational psychologist, teachers and classroom assistants all feel she is able to go to mainstream school and that gives me confidence in knowing I'm making the right decision for her future.
Unfortunately though, over the past months I've started to have new questions. Learning disabilities have been creeping into my thoughts. Caitlin has always had a fear of noise, particularly high pitched or unexpected noises. Drilling, aeroplanes, hairdryers, party poppers, fireworks etc have always really frightened Caitlin and fear of these types of noises is quite common for children and adults with hydrocephalus. Auditory systems are affected with hydrocephalus and sometimes children/adults feel very anxious/overwhelmed when they hear particular noises and hear them much more loudly than those without hydrocephalus. Caitlin responds by covering her ears and crying hysterically, and often finds a place to hide. She doesn't cope well at birthday parties or in crowds of people. She's been doing better, even participating sometimes in loud activities but only if I am right beside her giving her constant reassurance. The noise issues seem to be escalating in that she starts panicking about a particular noise even when there is no noise but because she anticipates there will be. Like when she spots the phone and starts to panic, getting tearful and anxious, refusing to come into the room in case it rings. Or if we light a fire or mention lighting a fire she thinks the fire might make a crackling sound and becomes tearful and anxious. She's started waking in the night saying she's having nightmares about aeroplanes flying and the noise is hurting her. She won't go to sleep in any body else's house without crying about some sort of unfamiliar noise. I can't shout up the stairs to David to tell him something or even raise my voice as she just gets so annoyed or upset. She won't go out into the back garden in case there's flies or bees. She "zones out" when watching TV or playing, preferring to play alone rather than with her sister. Her teacher mentioned today they've noticed Caitlin is rocking back and forth while sitting. We have never noticed that but now I'm in a flap wondering is this something more than the effects of hydrocephalus? Autism? ADD? Non verbal learning disorder? I've looked them all up and Caitlin doesn't quite fit enough symptoms. She interacts really well with adults, is very smart and the content of what she says makes sense, and she does well with small groups of familiar children. Even if it is effects of her hydrocephalus, it's affecting day to day life. I have an appointment with her paediatrician tomorrow and I'm going to ask about possible sensory therapy or anything she could recommend. I'm going to tell her everything to see if she thinks she needs further testing. If she does, it may not be as easy to move Caitlin to a mainstream school. Although that's still the plan.
In other news, we see Caitlin's neurosurgeon next week, all being well he will give us the green light to go to Disneyland which is planned for the 9th Feb. We haven't told Caitlin yet after having to cancel in December. I really hope we do get to go, she totally deserves a amazing trip and we could all do with a holiday!
Apart from all of the health related news Caitlin had a great birthday and we all had a fantastic Christmas. It was just much needed relaxing family time!
At the end of the day, what I really hope for this year is for my girls to be happy and healthy. That's all I ever want.
Hi my friend. I'd like to start with congratulating you on your proactive head start with your daughter! You've figured out things it's taken me years longer with my son!
ReplyDeleteAnd you questions are all awesome and valid. Many you'll figure out some with help others with trial and error! If your anything like me you'll feel lonely and isolated from peers because of the differences of our children.
But keep your chin up. My son attends mainstream school, struggles with NVDL and other learning disabilities, wears braces (which we point out are no different than glasses), still remains in a nappy, and can tell his peers about his differences with confidence. So there is much hope for the future. If love to keep in touch and hear how your daughters first year goes!
With love and blessings.
Thank you Melody :) It's lovely to hear that you son is doing well at school. I really hope I can say the same for Caitlin next year! After speaking with her pediatrician she would like Caitlin to have a sensory assessment and thinks she has hyperacusis which is over sensitivity to sounds. I would definitely agree! It would be great to stay in touch, I learn a lot from other parents whose kids have the same issues as Caitlin and we all need to support one another :)
ReplyDeleteI'm glad your pediatrician listened to you and you're having an assessment. Kingsley also hates sudden and loud noises and isn't a big fan of crowds, but it's been getting better as he gets older and we can talk him through it.
ReplyDeleteAs for next year (and I can't believe our kids are heading off to school!!!!!), I was planning on doing a one-page note for all the kids to take home the first week. Just something saying 'hey, Kingsley uses a wheelchair and you're probably wondering why' and then just give basics - it's called SB, it means he has spinal cord damage, it's not contagious, it's not big deal. And tell your kids his wheelchair isn't a stroller, so hands off. ;) That way they don't have to wonder and whisper to their kids not to ask questions or whatever, just get it all out there. Well, not the personal stuff, just the obvious.