Apparently its “cruel to let them lead a pointless life of a vegetable” Those are the words of some woman who appeared on some sort of TV programme momentarily (or so I am told) and who now is seeking attention by being vile… Another Katie Hopkins in the making I guess. The sad thing is, there will be people out there who are stupid enough to believe her, or will let her words affect their choices in the future.
The reality is that nothing, NOTHING could be further from the truth.
A year to the day since my last blog, and I had meant to write anyway but Seren (and her sisters) have been so busy living life to the full that I haven’t had time!
I will keep it brief, in the hope that I can somehow find more time to actually blog but I know that probably wont happen. Life is SO BUSY!
Seren is now 5 and almost 3 months! She started back at school just over a week ago and walked in to her Year 1 classroom with no problems at all. Seren attends our mainstream infant school and for as long as she is happy and developing well, she will stay in mainstream education. She is so confident and so happy at school. She has friends and on the most part she is just accepted for being Seren. Some children take the time to try and understand her more than others do and some children seem to just have a knack and can understand her as well as I can. I think the one person who understands Seren’s attempts at speech the most is Violet. Violet is Seren’s little back up when I need a bit of help understanding her and often Violet will say “no mummy, Seren didn’t say that, she said….” It makes me smile that Violet is so close to Seren. Only 22 months younger, Violet’s speech overtook Seren’s when Violet was about 13 months old. Seren really struggles still and although she is starting to put 3 or 4 words together, they are not clear and she is unable to use any kind of linking words. So for example she would say to me “me, ‘nastics, yes!” for “am I going to gymnastics today”. She would say “orange juice” for “can I have some orange juice?”. Its like she is a mini-foreigner who only uses key words to make themselves understood and on the most part, this is an entirely effective method of communicating for Seren because she gets by that way.
What has become apparent over this last year is that the speech and language support that Seren has been getting is completely inadequate. As people hear in the press and in support groups, everything is a fight and it really has been a fight over the last 12 months to get an improved provision for Seren. Finally it has been agreed and I am hoping that the higher intensity and specific support she is going to get this year will really help her along. Seren finds nothing more exasperating than not being able to make herself understood. Her receptive language (her understanding when someone is speaking to her) is amazing and she understands loads – I remind myself all the time how utterly frustrating it must be knowing what you want to say and not being able to get it out or make those around you understand. I found out recently that adults with Down’s syndrome are at a higher risk than the typically developing population of suffering mental health disorders and depression, which is linked to their speech, language and communication difficulties. With this bit of knowledge under my belt I am more determined then ever to help Seren as much as possible. Speech remains Seren’s greatest area of delay.
In other news… we got a DOG! Red, a bullmastiff, joined us in January and Seren and Red have hit it off big time. Seren loves the dog and the dog loves Seren. Red is a big dog, but is calm, loving and very loyal to us. Red seems to know that she needs to be gentle with the kids and Seren (although now eye to eye with the dog) loves nothing more than looking in the dogs eyes and chatting to her before giving her a cuddle. Within the first few days of bringing Red home, Seren seemed to jump in her desire to describe things to us verbally “dog hungry”, “dog bite me”, “look! dog sleeping”. Seren has also completely understood that we have multiple names for Red, including Reddy Roo Roo, Woo Woo, Wuzzles and Stupid Dog.
This is my last year with a preschooler in the house. Violet will be going to school next September and is currently accessing all her funded hours at preschool so I only get her to myself on a Tuesday and a Thursday. Tuesdays are our snuggle days (her choice!) where we watch a film together and just hang out. On Thursdays we go out and have lunch with my dad.
Ava transitioned in to her junior school, going in to year 3. She loves, loves, loves her new school and is very happy there. They even have a “young carers” club which has won awards and Ava has decided to join. While the “caring” element of having Seren as a sibling is nowhere near the same as having a family member with an illness or physical disability, Ava does go above and beyond what a typical 7 year old has to with Seren as her sister. Seren’s independence means that I often cramp her style, and if we are eating out it is only Ava who is allowed to take her to the toilet – I am not allowed. Ava supports Seren and cares for Seren and her safety more than is normal – she acts as teacher, interpreter and advocate. I am proud of Ava and the way she is with Seren and I am proud that she is happy to be considered a young carer.
This year is the only year when Seren is at her infant school without one of her sisters there to keep and eye on her, but I can’t say she has even noticed, or that she cares. She is so well supported by 2 lovely t/a’s and is forging new sweet friendships with a couple of the girls in her class. I always think that the children who are drawn to Seren, and who give her a chance are the ones with the kinder spirits.
As well as doing gymnastics (which she started just before the summer holidays) she now also does ballet and Rainbows. With the negativity that some people spout (Ursula Presgrave’s “anyone born with Down’s syndrome should be put down”), I wonder how it is that anyone could think that Seren would be better off dead?! She is having a really bloody good time living her life and long may it continue. Sadly outdated stereotypes and moronic people like this Ursula person make the world a harder place for people like Seren. Luckily I have not come across many nasties like her. In fact only one old friend (now very much no-longer-a-friend) told me in no uncertain terms that people like Seren should be segregated from people like him – his higher IQ is apparently cause enough for societal segregation. He considers himself better than people with learning difficulties, and I can’t even repeat what he actually said in case Seren ever reads this blog in the future – suffice to say he was so vile that it actually made me feel sick.
This afternoon, for the first time this academic year, each of my girls has a friend over to play. I can’t lie, 5 years down the line and I can honestly say that Seren’s Down’s syndrome is such a tiny fraction of her, that I don’t think about it much at all. Seren has always just been Seren and her love of life, her enthusiasm, determination and feistiness just make her the person she is… I would not change a thing about her – she has taught me so very much and continues to teach me – she is loved and valued and unique, just the same as my other 2 daughters.