Category Archives: Special Needs Parenting

Too cool for THAT school …..

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When Aine was approaching school age, it was our very strong desire that she was taught in a mainstream setting. I’ll be very honest with you, I feared the stigma of specialist settings. I imagined her growing up, meeting new people, and being judged for saying she went to a special school. I felt she would be academically ahead of the other children there. I thought that in mainstream she would be pushed to achieve, she’d have competitors, peer pressure, standards. I failed to take into account the pure stubbornness of her and the lack of interest in what others were doing, so long as she was doing what she wanted to do!

It worked initially, in a fashion. She learnt to read, to form her letters and numbers. She learnt shapes and facts. She performed in plays, I will never forget her little friend prompting her ‘Aine, it’s your turn’ in a loud whisper mastered by five year olds, and her saying ‘oh, look at those flippy floppy feet!’ We’d practised for months. Seeing her friends bring on a chair during a dance display to help her to stand up, hearing her shout ‘where is my mummy’ upon hearing my unmistakable laugh and seeing her straining away from her teacher to get to Daddy. Those are wonderful memories that I will treasure forever. But I also remember the stress of attending parent/child activities. Doing projects at home and sharing them in school with a group of other pupils and their parents. I was beyond stressed. I would worry for days that she wouldn’t cope with me being there and invariably I was right to. Mostly the other parents paid no attention, I knew a lot of them and they understood Aine’s difficulties, but I still felt under the spotlight, unable to control my child’s anxieties and outbursts. The stress of CAF meetings, review meetings, receiving reports, attempting homework, the dreaded Sports Day. I’m sweating thinking about it all.

As she entered year 3 it was apparent how far behind she was. She had missed a lot of schooling because of seizures and illness. She had been attending half days for the most of her last term of year 2 because of fatigue and now she was still really operating at year 1. We decided to ask for a placement, part time at a special school. Thankfully, after a lot of stress and begging, we were granted a place two days a week at a wonderful school. After looking around both MrM and I felt that we could see Aine fitting in well there.

Year 3 at mainstream was a bit of a non starter. By November we knew that Aine wasn’t moving forward and that mainstream schooling was no longer working for her. She knew she was being treated differently, she wasn’t doing PE, she wasn’t accessing the curriculum, she was often sitting apart from her peers. I was receiving messages that Aine was a problem to them and that broke my heart. In order to get Aine the education and support to develop she needed, we felt that the only option was to continue just with the specialist school. Thankfully she was offered a full time place there. I say that as if it was easy. None of it was, I have stories that would break your heart, but my dignity is preserved and I will keep them to myself.

Now don’t get me wrong, Aine still takes exception at having to attend school. She is still anxious about being away from Mum or Dad, she still wants to stay in her jamas all day, but the things these kids get to do is awesome.

She goes horse riding. She has sat in a helicopter and a fire engine. She’s made Chinese food and dressed in traditional Chinese dress. She’s danced the Charlston. She is about to go on her first ever residential. All things she couldn’t access before.

I would like you to know that I don’t think special school is the best option for all kids with additional needs. It just is in our case. Some mainstream settings get it right, some work really hard to include those children that need extra support and some struggle with that. I don’t regret any of the choices that we have made. I truly believe we have given her the best chances. And to prove it this week she was ‘pupil of the week’. For horse riding and working hard in PE. I love her school. Her teacher is wonderful. The kids are fantastic and the staff offer more than just education, they support our family and that is priceless.

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Mummy-0, Epilepsy-1

 

Today I took a bit of a risk. A measured risk, or so I thought.

After a week of seizure activity, how we describe brain disturbance but not actual seizures, she hadn’t succumbed to a seizure. So today, as planned, we embarked on a journey to Grandad’s house. We don’t go often as it’s a bit of a drive so the kids were mega excited.

After an early 5am wake up call Aine, (another side effect of unsettled brain pattern) I knew that there would be more seizure activity but figured that as it had been going on for over a week, with no actual seizures, it would be fine. So off we shot.

We got half way there when a full seizure took hold. Quick dash off the nearest junction, which luckily was less than a mile away and onto the nearest car park. I had the biggest one with me and thank goodness I did, because she was awesome. She did a brilliant job, stayed calm, took charge of the littlest one and let me see to Aine. Thankfully, and unusually, the seizure concluded without the need for emergency meds. Bonus! We got back into the car and headed back for home, much to the disappointment of everyone. They were all looking forward to being spoilt for the day.

Today, epilepsy won. I have to say, in a most defeatest manner, it generally does. It doesn’t play fair. It’s dirty and sneaky and downright evil!

In order to retain an element of positivity, I put on my Pollyanna hat and try to find things to be glad about….

1. I wasn’t alone. I had backup!
2. The motorway was quiet.
3. The seizure stopped without meds!
4. Aine didn’t puke in the car.
5. My bestie took the biggest and littlest in so that I could focus on Aine.
6. We had a nice run out 😳

So you won this time but you didn’t dampen our spirits. Epilepsy, we give you the finger!

Fake snow ….

A lot of Aine’s disabilities are obvious. She has a splint on her leg. Her right hand hangs limply. She uses a wheelchair. When she walks she has a very awkward gait. She talks to, hugs and kisses everyone. She has meltdowns. She has seizures.

She is also visually impaired. She wears glasses, but so do I. You wouldn’t necessarily know that that, in itself, is a disability. Today we had an appointment at the eye clinic. Aine was born with cataracts. This was picked up at her new born check; the paediatrician couldn’t see a red reflex when she checked her eyes. When she was four days old we saw a lovely doctor who confirmed cataracts. Here we met the lovely nurse specialist who has been with us since that moment on. Thank heavens for her. Anyway, age 4 weeks old, Aine had surgery to ‘remove’ the cataracts, and her natural lens, and she was fitted with contact lenses. This was followed by a traumatic few weeks when we had to give her eye drops several times a day. We set phone alarms to remind us. When I hear that sound now I still jump up!!! She has a lifetime of glaucoma risk so requires yearly pressure checks. That was today’s visit.

I’ll be honest, as lovely as the staff are, I’ve always hated this appointment. Aine gets upset, she is totally freaked out by the equipment. It’s not nice, I think most people are icky about eyes. Her worst behaviours come to the fore. Today I was bitten, scratched and kicked by a child that I know loves me and trusts me to look after her. That’s nothing different to any other appointment we’ve had since she grew past being a swaddled baby. But it’s essential. She has poor vision in one eye. We need to protect the one that’s doing all the work.

So it was decided. The next time she has it done, it will be under general anaesthetic. It has to be done. It’s the only way. We don’t like it, but it is what it is. She left happy. She blew her consultant a kiss, told her to put it in her pocket for later. She gave her nurse a huge hug and a kiss. I left happy that they saw the lovely girl in my life, not the fighty one!

We came home, had cake, played with fake snow and put our jimjams on early doors. For her, it’s all forgotten. Thank heavens for fake snow!

When the carer can’t care…..

Today I have hurt myself. I was turning around to get some cheese from the fridge and my back went into spasm. I was frozen, MrM applied pressure and helped me to the sofa. I felt utterly pathetic. Every time I moved I yelled in pain. I sat, stiff as a board, whilst the world went on around me. Of course it was a typical Sunday. And in typical I mean chaotic.

Aine has been having seizure activity today. That’s not actual seizures. She has a cough and her tolerance is lowered. She shouts a lot, her behaviour is markedly worse. She is more demanding, and her sleep is interrupted. In fact she’s lying next to me at 3.30 am watching TV after waking and having a full on 20 minute meltdown!

So my point is, as a carer, what do we do when we are sick. Well the true reality is, we suck it up and get on with it. Like most parents. However most parents don’t have to physically lift their seven year olds into the car or into the bath. They don’t have to lie motionlessly in bed with two heavy legs resting in their hips for comfort. They don’t have to push a heavy child in a wheelchair. They don’t have to maul their (non-compliant) child into their clothes every day. They don’t have to pick them up, screaming and objecting, after a fall. But I do. And how do I do that with an injured back. It’s not a day job I can ring in sick for, or ask for reasonable adjustments for. It’s not a job, it’s a life, and I won’t compromise her welfare. I can’t.

So the truth is I just have to do the best I can. Use MrM when he’s here, ask friends and family for help and just get on with it. It’s a busy week ahead so best knuckle down and throw back the painkillers.

The ‘R’ Word …

All SEN parents know it, the majority will ‘shrivel’ a little when someone uses it in their presence. Tonight, the use of the word has offended me.

A fellow SEN mummy and I were only discussing this earlier today. We started on the subject of racial hatred and switched to disability as we got more angry about it. We visited our children’s school to watch the Christmas play. We had coffee and ‘Christmas’ pies (nod to another SEN Mum) and talked about how kids still use the ‘offensive’ words, and in days gone by, we shamefully did too. (We may be ‘super’ but we are not perfect.) And then tonight it pops into my life. I have a child with learning difficulties. She’s not a ‘retard’, she’s a child. I am going to find this term unacceptable. Not one to rush into a battle, I ask myself ‘Am I being over sensitive?’. So I google ‘retard offensive’. Kind of wishing I hadn’t because it’s a bit late to be getting the soap box out and I have work in the morning. [removes soapbox from under bed anyway and hastily dusts it off.]. Said link, says its ‘not offensive’ because ‘one’ is generally using it about someone who is not ‘mentally impaired’ so therefore it’s not being derogatory. What a crock! We see someone behave in a way that, is in our opinion, ill thought out. We make a judgement about that behaviour and judge that it is akin to the actions of someone with learning disabilities. So we call them a retard. But it’s not offensive. Seriously? I have to say IT IS OFFENSIVE!!!!

Whilst we are on the subject, mong, spaz, spacker, window licker – all highly offensive.

I know that we use insults flippantly, that mostly we don’t mean to cause offence, and I know that generally people who use these words are not bad people and not really aware of the impact it may have. So please, if you must insult someone, and I might hear, or read it, find a word that’s not offensive to someone else. Eg – Dipstick, donut; offensive to dipsticks and donuts but they have no feelings. Because each time a friend uses one of these words, I die a little bit. [Repacks soapbox and stuffs hastily under the bed until next time.]

I love my girl, I can’t change the world, but if I can stop someone using that word in future, my work here is done!

Sleep is for wimps …..

My next blog was going to be about respite. I hold that in reserve because sleep has been a bit of an issue of late so I’m shoehorning this subject in. 
Aine was a great sleeper. Through the night by 11 weeks old, transitioned into her own room without a murmur, cot to bed without a fuss, two hour naps during the day and 11/12 hours a night. I was blessed! She would ask to go to bed, quick story, our little ‘ask the Angels’ ritual and a kiss goodnight and she was settled. Then we had the pleasure of introducing sodium valproate into her medication regime; the juice of the devil! Our great sleeper became an insomniac. I write this at 8.50 pm as she is wired next to me. That’s not so late you think, and you’re right. However, this is a rewrite after the original version got lost in the copy/paste nightmare at 11.50 pm a few nights back. The hazards of being a technophobe!  
I start stressing about bedtime at about 10 am. I know the nighttime battle will involve wanting to sleep in my bed. Objections to this will result in meltdowns, not tantrums, meltdowns. (Will cover those and my utter annoyance at the word tantrum another time.) I may eat my tea before 10pm, I may not eat at all. Or I may have Dominos at 10.30 pm. It’s a lucky dip! Generally if I’m doing bedtime, I fall asleep before Aine! MrM has been squeezing himself into a single bed almost nightly for about a month. Sometimes he gets to sleep in his own bed, but generally Aine and I share the marital bed these days. It’s not funny! I stress that she will be tired and grumpy the next day. I stress that it will impact on Ned. I stress that I won’t get enough sleep. I stress that I will have to deal with the meltdowns. I stress about watching Balabloodymory again! 
Once she’s asleep, she pretty much stays asleep. That’s a huge blessing. I get to sleep eventually and if Ned sleeps through its ok. But that doesn’t stop the nightly bedtime battles eating slowly away at my nerves! My poor tattered nerves! I know that there will be special needs parents reading this, nodding, smiling, frowning and thinking I have it easy compared to them and I agree but my mum had a saying ‘what you never had, you never miss’ and I miss my peaceful, quite beautiful, bedtime girl.