Yesterday, our beautiful Enfys celebrated her third birthday. She has had one heck of a journey to get where she-is today and I am So proud of everything that she is.
This time last year we were beginning to feel like she would never walk. She had recently been given a little freedom with the use of a walking frame.
I still remember the day Enfys started walking.
I wasn’t even looking at her until I saw that she hadn’t stood up from a crawling position. It was the 9th September. She was 25 months old. She surpassed all our expectations when she started walking.
There are things that haven’t changed for the better over the last 12 months. Her communication Skills are one. Last year she was saying “mam”. This year she doesn’t say a single word however she is more vocal than she was. In fact, Enfys’ favourite pastime is humming the tune of Twinkle Twinkle little star. Its cute to be honest.
Over the last 12 months her personality has really started to Shine through. She’s mischievous] Loving and funny. Her bond with her Siblings is second to none. She shares with Anwen and loves to clutch her. She annoys Macsen by running away with his toys. She will happily sit and brush Seren’s hair, but she looks to Garreth for rough play.
Health wise we have had a fantastic year. We had one ride in an ambulance last November When She had what seemed to be a febrile convulsion when she had a chest infection. Fair play, she was poorly with it.
In a few weeks time Enfys will be starting the next big adventure. Nursery. I’m still not 100% certain whether she will have 1 to 1 support for the start date but I’m hopeful that the LEA will pull their socks up.
Well, the last three years have been an adventure with our Rainbow, I’m pretty certain the next year will be too.
And suddenly you just know it’s time to start something new and trust the magic of beginnings.
It’s been a long 14 months, but tomorrow marks the start of the rest of Macsen’s life. He has had such a tough year. Struggles with speech, communication, school, and people have pretty much been the theme of the year. He hasn’t been a happy child. As much as I hate to say it he’s been unhappy, lonely, and destructive.
Macsen, my lovely little boy, the boy who brings me so much happiness and joy, has felt completely lost.
Tomorrow, he starts at a Speech and Language unit. This process has been an easy one. That in itself is something no one expected. Everyone has told me how unlikely it was that Macsen would even be considered, let alone get the place.
Being honest, the school he was attending didn’t think he would get in on the grounds that his behaviour is disruptive, and he can often have aggressive outbursts, moments of general disruptiveness, and just generally not being very nice. I think the staff at the school had already written him off as a disruptive child, who wasn’t going to get anywhere. As much as it hurts to say it, I believe that is the case.
Two people saw through his behaviour. They were the two people who mattered most, whose influence meant the difference between Macsen having a chance and Macsen being labelled as a child with no prospects.
Macsen proved to them what a star pupil he can be. He proved that all he needs is the right guidance; the nurturing of a classroom focused more on his wellbeing than his attainment levels. He proved that he needs more than any other school could offer, and that the right setting will give him a chance.
The emotions I’m experiencing over my new change keep changing. One minute I’m ecstatic and the next my anxiety shoots through the roof. Normal feelings, I am sure.
Tomorrow, my little man starts ‘big school’. Tomorrow, I will kiss my boy goodbye in a taxi outside my house. Tomorrow, I won’t be taking him to the school gates.
When the Reception allocation announcement for September arrived on my doorstep the other week, I had no doubt. Macsen had been offered a place at our first choice. The school is never oversubscribed. There are no issues with class sizes.
Despite the offer from the school of my choice, I still had that sinking feeling in the pit of my stomach. I still felt that there was something missing. There was still a part of me that worried I wasn’t making the right decision for Macsen.
A few days later, another letter came through the letterbox. From the LEA, advising us that Macsen was being considered for admission to the Speech and Language Unit at an out of county school. I knew the application was happening, but I didn’t really think anything would come of it. I know how valuable places at these units are and this September there are just two places available.
The teachers at the unit have met Macsen and in just that short time, she actually got our boy. She could understand him. She managed to sign with him. She communicated with him. He responded well to her. He enjoyed the time spent with him. It was such a positive experience. Hearing her feedback on Macsen and his abilities caused me to cry. I sobbed down the phone to her and told her how much of a difference it makes to hear something positive about him. The phrase that most sticks out is: “he will benefit from a smaller class. He’s a bright boy and he needs the chance to progress and he needs to make friends’.
I agree wholeheartedly with her. He does need friends. Macsen’s world away from his family must be so lonely. He must feel so shut off from the rest of the world. He WILL benefit from being in a classroom with peers who face the same difficulties he does. He WILL grow in confidence communicating with adults who have the time to understand him. He WANTS to learn and attending a specialist speech and language unit will help him to reach his full potential.
Irrespective of my worries about his journey to school and back, I have to do what is best for Macsen. If one of those two spaces is offered to Macsen, then I am grabbing it with both hands. I will sign on the dotted line before anyone can rescind the offer. Being perfectly honest, if bribes were considered legal then I’d certainly be offering one right about now.
Macsen is not a naughty boy. He is a bright, intelligent boy who feels shut off from the big wide world. He is isolated and frustrated by this. I hope we can help him ease this frustration.
When I spoke to the Key Stage 2 teacher at the unit, she explained the application and admission process in more detail. I have included a brief summary below.
- The first stage, which had already happened by the time I spoke to her, is a panel meeting. Members of the panel meet and discuss all the children who have been put forward as potential suitable candidates. The unit receives admissions from 4 local authorities. `
- Stage 2 involves the staff meeting the children who appear to be suitable candidates. They do this in the child’s current educational setting. During the session they interact with the child and assess the child’s abilities – the children who attend the unit are all of average or above average intelligence but have severe speech, language and communication difficulties. If the child isn’t suitable, parents are informed, and the application does not continue.
- Stage 3 is to speak to local authorities and update them on the progress. Invitations are offered to parents of the suitable children to visit the unit.
- Stage 4 involves going back to panel and discussing which of the candidates are more suitable. The 2 most suitable will be offered a place while any other’s will be placed on a waiting list.
It’s a long winded and complicated process and I feel privileged that Macsen is being considered.
A few weeks ago, I told you about 5 appointments you could expect with 22q. There were 5 appointments that Enfys has attended in the last 2 years. I also said that those appointments were only the tip of the iceberg. Today, I’m giving you 5 more appointments you can expect to attend for 22q.
You can expect:
Speech and Language Therapy
Speech and Language difficulties are common with 22q11.2 Deletion Syndrome. For some children the difficulty could be physical, due to a cleft palate or other malformation. In other cases, like Enfys, the speech delay is a developmental issue.
Enfys hasn’t started to say any words yet. She is beginning to make sounds. It’s only really been the last 4 months she has made eye contact and attempted interaction with us.
Enfys hasn’t needed to see the Dietician for over a year now. She’s still small and considered underweight (25% for weight 75% for height) but she’s doing well.
Children with Di George Syndrome are very often on the smaller side of the centiles. This difference has meant that an entirely different centile chart exists for babies & children with the condition.
Dietetics first became involved with Enfys when she was admitted to Noah’s Ark. She hadn’t gained any weight for weeks. They made the decision to put her onto high calorie formula. She remained on the formula until she was 18 months.
There are many different things that affect 22quties, hypermobility is a common complaint. Enfys has it. As a result, children often have bendy joints that can’t support themselves well. Enfys’ biggest problem is her ankles. Her left is worse than the right but it does make walking difficult. We regularly see a member of the Orthotics team to monitor her progress with her pretty little ankle supports (or splints).
No, I’m not mentioning the same appointment again… this one has a ‘P’. Problems with vision are also common and regular eye health and sight tests play a crucial role in managing this. Enfys’ last appointment was almost 2 years ago now, so we are due any time now.
As it stands, Enfys’ eyes are currently fine but that’s not to say they will stay fine.
As with every other appointment I have mentioned Audiology is another common appointment for people with 22q. Hearing problems are often due to malformations of the ear components, however, as things stand at the moment, Enfys’ hearing is a.ok. We don’t have to attend another audiology appointment unless we request one.
There we have it, 5 more appointments you could expect with 22q.
Share and be aware!
Raising children with additional needs is often a hair-raising task with many, many challenges. From the day-to-day living right through to the boring, mundane application forms.
I’ve had to fill in Enfys’ nursery application recently and how hard it was. It left me feeling more than a little annoyed and frustrated. In fact, it made me realise that, for the first time, Enfys’ differences will cause her a problem. Not that I think that’s actually the case, but that’s how I feel about it. There is so much more to consider.
Why did I hate filling in Enfys’ nursery application?
Three lines? Really?
The application form had this much space:
To fill in Enfys’ medical history. 3 lines. 3 blinking lines to detail all of Enfys’ medical information. To start with she has Di George Syndrome, a compromised immune system, global development delay, hypermobility. That’s without going into the finer details of her condition and what it means. She has no sense of fear, danger or safety. There’s so much from the medical side to the social side.
One size most certainly doesn’t fit all
A lot of the medical and development information has simple check boxes for yes and no. There’s no opportunity to explain what’s going on but there’s also no opportunity to say it is still early for bladder control.
It may well be that she does have awareness by September but right now she doesn’t seem to have a clue (and finds it rather amusing to sit and play if she does have a wee while her nappy is off).
There’s so little awareness of her condition
This is a big one. I mean, I don’t expect everyone to know exactly what it is but I am fully aware that not many people have heard of Di George Syndrome – I certainly hadn’t until Enfys was diagnosed. It is this that makes filling in forms so difficult. I want to provide enough information without overloading it. I ended up printing off a copy of the 22q Consensus Document from MaxAppeal and handing it to the school, Not sure how much they appreciated all 63 pages though. Haha!
This week is not the same as next week will be
With 22q, things can crop up unexpectedly. They can deteriorate rapidly or massive developmental leaps can be made in a short time. I go into any form automatically thinking about our worst times. Times when Enfys goes from a well child to being hit with some sort of bug in a matter of hours. Times when she really has no idea of the danger she’s putting herself in. It’s not good having to think negatively about your child’s life.
With each day Enfys grows up
Filling in more forms means that Enfys is getting older. School applications means that she is reaching school age. It reminds me that she will not be the cute and sweet toddler she currently is. She will be cute and sweet still, but she will be older… more independent. And to be frank, that thought is a little more than scary.
Filling in application forms is a bit of a pain at the best of times but I really hate filling in forms for my special child.