A world without Down’s Syndrome? No thanks!

This post is in relation to the recent documentary of the above title that was shown on the BBC last week. 

Is it really 2016? Do I really live in a country that sees difference as less? Apparently so…

Instead of seeing those with Down’s Syndrome as a burden, I wish the world could see the many positives and benefits. It is important to bear in mind that the physical health problems that can affect those with Down’s Syndrome can also be present in anyone of us. 

The information given to expectant mothers in this country does not help them make truly informed decisions. It appears that it is all doom and gloom if you have a child with Down’s Syndrome. How can any medical professional categorically say that a newborn baby with Down’s Syndrome will not meet particular milestones? We are living in a society that sees people in terms of how much they will cost, not their strengths or what they can offer their communities. 

I have worked with the most amazing teenager with Down’s Syndrome for a little over a year. It is not an exaggeration that she has helped me as much as I have helped her. 

September 2015 saw me at a low; I was under the crisis team and rarely leaving the house. My anxiety and depression had complete control of me. I started working with Faith mid September. She was like a ray of sunshine. She gave me a reason to leave the house. Faith genuinely misses me when I am unable to work with her. She cares about me so much and this was very much needed at my lowest. 

In the space of a year, Faith has developed her own self help skills. She can now fasten buttons, organise her belongings for school and tidy up after herself. Faith is an active member of her local guides group. She has friends there. When we first started going, Faith would be practically glued to me. Now, she will go over and sit with her friends and initiate conversations. She is so much more confident. Faith completed the summer reading challenge in her local library. She has gone up an entire level in her reading! Faith’s sense of humour has come on leaps and bounds. Her emotional understanding is always improving. She apologises when she is in the wrong and can explain why she is sorry. Faith is lovely with animals. She loves nothing more than walking round the park with Walter and Bella. Faith wants to learn new skills and to be as independent as possible. She just needs more help to show her how. 

I am fully aware that a child with Down’s Syndrome brings its own challenges. Faith can be incredible stubborn, easily distracted, bossy and can choose to do things how and when she wants. Not everyone feels they are able to have a child with Down’s Syndrome which is completely understandable. 

This post isn’t intended to shame those who feel unable to have a child with Down’s Syndrome. I am all for pro choice. But bear in mind that a diagnosis of Down’s Syndrome is not necessarily a bad one. Working with a child with Down’s Syndrome has made me more patient, empathetic, caring, tolerant and understanding. I get to laugh, smile and enjoy life in so many ways thanks to Down’s Syndrome. 

I dread to think what my life would be like without the wonder that is Down’s Syndrome. 

In the summer time

During the school holidays, I work more. As a result, I have been slacking in regards to my blog. Thankfully, I have been feeling a lot better since I posted last. But if I feel like it again I will be going to see my GP. 

I have thoroughly enjoyed working with Dom and Faith more than usual. The days fly by and we have been up to lots of things. I have shared a number of photos on my Instagram account (@originalgemskibob) if you would like to see them. 

Dom has enjoyed spending time with Walter. We have taken him for walks and all enjoyed some lovely ice cream. Dom, Walter and I visited my sister at work. Walter was fussed over and Dom made sure everyone was working! Tomorrow he wants to bake a cake for my birthday at the weekend. This is the first time Dom has asked to do anything like this for my birthday. 

Faith and I have done loads this summer; colouring in, played board games, dog walks in the park, watched DVDs, been the cinema, shopped, workshops at Pets At Home and started a reading challenge at the library. 

As I mentioned earlier, this weekend it will be my 31st birthday. Dave and I are having time off work and having some much needed time together. We are seeing a mortgage broker on as we are desperate to have our own house. We are also spending time with our friend and her two little girls and having a meal with family. 

In terms of my mental health, I am doing well. I still experience a dip in my mood and anxiety but I am able to deal with it. It helps that I have a really good support network around me. 

One way I know that I am in a good place is that I am really broody. Dave and I have talked about having children. Once we are settled in our own home, we are going to start trying for a baby. As excited as I am, I am also terrified about having a baby. A huge concern I have is my medication. I would not be able to take the anti depressant I am currently taking. I have had a long struggle to find the right medication for me so the thought of having to talk to my GP about this fills me with dread. 

The Future for our Disabled Children

For those that don’t know, I am a carer for two very different teenagers. For five years I have been working with Dom, a 13 year old with Autism and ADHD. Since September I have been working with Faith, a 13 year old with Down’s Syndrome and suspected Autism.

My jobs are rewarding and challenging. I care a lot about Dom and Faith. As they get older, it is hard not to think about their future. 

The reason I decided to write this post came about as a result of going to the park with Faith and my dog Walter and her dog Bella last week. It is obvious to people that Faith is disabled. The vast majority of the people that come into contact with Faith are understanding of this. 

When walking the dogs, Faith and I came across a group of girls who looked around the same age as Faith. They were sat talking on a bench. As we walked past, Faith said, “hi girls!” All the girls said hi back and smiled at Faith. 

It got me thinking; would the same happen to Dom? Like Faith, Dom loves talking to people when we are out. But would a group of teenage boys of a similar age be as friendly with him? What would they make of him jumping up and down, flapping his hands and asking the most random and bizarre questions?

Faith wants to do things herself. She loves nothing more than being given a job to do. She really wants to develop her independence. The same cannot be said for Dom. He is not as intrinsically motivated as Faith. Dom operates on the mindset of ‘what’s in it for me?’ 

Dom’s autism has changed as he has grown up. It seems to his parents and I that each week there is a new challenge. Dom can display challenging behaviour at home. I am talking full on, violent outbursts. In the five years I have worked with Dom, he has never been violent towards me or in my company. It has taken him years to actually talk openly with me about these outbursts. 

At 13, Dom currently stands at 5’8″. He is going to easily clear 6ft. For the most part, Dom contains his upset and anger when in school. There have been the odd incidents where he has muttered under his breath but there has been no aggression towards himself or others. He is like a coke bottle; there’s only so much pressure and stress he can withstand until it becomes too much. The lid of the bottle flies off. 

Will there come a time when Dom will struggle to deal with his annoyance and frustration in public? I hope not. Dom would be mortified. 

Another difference between Dom and Faith; Faith isn’t aggressive. Instead, Faith goes on a ‘go slow’ as a way of showing her displeasure. She never has a sense of urgency but everything takes ten times longer to do. 

Members of the public react so differently when I am telling Dom or Faith off. With Faith, I get looks of disapproval when I tell her off. It’s as if she should have a get out of jail free card so to speak regarding her behaviour. Like it’s ok for her to be cheeky or ignore me because she has Down’s Syndrome. Yet with Dom I will hear people tut, see them roll their eyes or look happy when I am asking him to use his indoor voice or remain in a queue. 

So my biggest worries for Dom and Faith’s futures are very different. 

If you are not firm with Faith from the get go she will know that she can get away with sarcastic comments, ignoring requests and getting others to do things she is capable of. My biggest worry is that she will not reach her full potential. 

Dom needs to be around people who get him and that he responds well to. There are no grey areas with Dom; he either likes you or he doesn’t. My biggest worry is that he will be completely misunderstood and so he will end up just being contained rather than being an active member of society. 

Let’s hope my worries for Dom and Faith never come to fruition. If I don’t continue working with them as adults, I really hope that they have the opportunities to live fulfilling and happy lives.

 

Snow in Spring

Today we woke up to heavy snowfall. It has stuck and continues to fall. So it’s another lazy day in. This gives me another day to try and get better. I’m still not 100% better. I really wanted to keep working but on Tuesday night I was so unwell. I was exhausted and had managed to sleep for only a few hours. I haven’t worked since Tuesday night. I feel so bad on Dom and Faith. But just getting a shower leaves me so drained My cough is still just as annoying but my voice is coming back. My entire face and head constantly hurt. I am full of cold and it is so painful when I blow my nose. I am not getting enough sleep. My cough wakes me up at about 7.30am and then I end up getting up. 

I am the worst when I am ill. But Dave has been looking after me. He has been doing jobs around the house and refusing to let me help as he wants me to rest. Walter has been super cuddly too and comes over when I have a coughing fit. 

I was notified earlier that I now have 500 followers to this blog. This is incredible. Thank you so much to each and every one of you. I appreciate you all reading, liking and commenting on my posts. I am fortunate enough to have made friends as a result of this blog too 🙂

  

Another Happy 13th Birthday!!!

Happy 13th Birthday to Faith!!! 

Although I have only been working with Faith for four months, she has made huge progress with me. When I first met her, Faith would instantly say, “I can’t do it” when faced with something she found difficult. Now, Faith’s confidence is growing. She wants to do things herself and is incredibly proud when she masters a new skill. 

Because Faith has Down’s Syndrome (and suspected autism) her muscle tone is low and she struggles with coordination. This makes tasks that you and I may take for granted a challenge. Faith is now able to put socks on without any help. She is able to use a knife and fork much more effectively when eating too. 

So a huge Happy Birthday to Faith; a cheeky, funny and loving young lady who continues to help me with my anxiety and depression as much as I strive to help her reach her full potential x

Walter, work and working out

Walter was fine at the vets on Saturday. He was going up to lots of dogs and people to say human. The vet was pleased with him. His weight is fine and he had his ears cleaned. Walter continues to come to work with me when I am working with Faith (the girl I work with). He loves getting to see Bella and it is lovely seeing them play together. Dave and I took full advantage of a rain free day on Sunday and took Walter to a nearby country park. He had a great time sniffing out all the different smells and meeting some dogs including a 3 year old miniature dachshund called Bella!!!

  
I am now working more hours with Faith. Her other carer has decided to quit as a result of Faith’s behaviour with her. There have been countless times that Faith has gone into what her Mum and I call ‘shutdown’ with the other carer. This is when Faith ignores and doesn’t respond when spoken to. I now work each morning before school and all the evenings after school except Wednesday. She continues to respond well with me. So much so that she completed two pieces of school work with me last night that she refused to do in school. 

Yesterday I had my first CBT with my new therapist. It went so much better than I anticipated. My therapist is lovely and I feel completely comfortable talking to her. It was an emotional experience as she acknowledged that I had experienced some difficult situations over the last few years. But it was good to feel emotional as I know I am in the right place to deal with the difficulties I experience. 

I am really enjoying the gym at the moment. Currently, I go to the gym five days a week and have the weekend off. It is perfect for me. I am already up early for work anyway and the gym helps me wake up properly. 

End of Year Musings

The end of the year normally results in people making resolutions for the year ahead. I’ve never been one to do this. If you want to achieve something, I don’t think you need to resolve to do it at the beginning of the year. 

I do think the end of the year is a good opportunity to reflect on the previous year. As much as I experienced some pretty extreme lows, I want to focus on things I have achieved and the good experiences from 2015.  

So in no particular order:

  • Honeymoon in Australia – being able to spend time in a place I have always wanted to visit was incredible. It was made even more special by Dave’s auntie, uncle and cousins. From taking us to Steve Irwin’s zoo, treating us to a 3 day trip to Sydney and the countless meals out we have some unforgettable memories. 
  • Getting Walter – our amazing little dachshund!!! He has brought so much to my life. My little therapy dog has been a constant companion at  my side since we got him in May. Nothing beats cuddles, walks and playing with Walter. 
  • My 30th birthday/surprise visitor – turning 30 was made extra special by a surprise three week visit from Dave’s cousin from Brisbane. It made me realise that I have some truly amazing people in my life. 
  • Work – Dom has made loads of progress this year. Getting work with Little Miss helped to rebuild my confidence as well as being incredibly rewarding. 
  • Family/Friends – 2015 helped reaffirm to me how I have an amazing family. Dave, my parents and siblings have been so supportive. I have also had quite a few days/evenings filled with laughter with them. I am also lucky to have some fantastic friends who have been understanding and caring when I have told them about my anxiety and depression. 
  • This blog – I started this blog as a way with dealing with my anxiety and depression. I never thought I would be part of such a wonderful and supportive community that has over 400 followers. So thank you to all those who have read, liked and commented on my blog. I appreciate each and every one of you. I talk with some people from here on a regular basis who I consider friends (Vicky and Matt). I’m hoping that this year that Dave, Walter and I get to meet up with Vicky and her partner John. 

Happy New Year!!! I hope 2016 is a great year for you all. I have some potentially exciting blogging news to share with you soon. 

Gemma x

Christmas concert and dog playdates

On Tuesday I went to watch Little Miss and Dom’s Christmas concert at school. As they came into their school hall, they both looked round to see where we (their mum’s and Little Miss’ other carer) were sat. It was lovely to see them waving their hands frantically with beaming smiles on their faces. Little Miss was in her element being able to perform. Dom was a bit more reserved and self conscious but got into it eventually. I was so proud of them as they both did amazingly well!

Little Miss has been so well behaved. Her Mum and I agreed that if she carried on I would bring Walter round to hers on Tuesday after school. It went so well! Little Miss has an 8 year old Jack Russell called Bella. Walter and Bella hit it off straight away. Little Miss adores Bella and Walter and she loved having them both at her house. 

  

Little Miss’ Mum said that I can bring Walter with me whenever I am working. This is great all round. I am conscious of leaving Walter on his own at home for too long. So much so that I had passed up on extra work with Little Miss in the past. Now, I can work more and Walter gets to spend time with a dog he gets on with. So a win win situation. 

Dave and I have to get some last minute bits in for Christmas today. We are spending Christmas day with my family. We introduced my lot to our tradition of cheese and biscuits last year and they loved it. So we are going to get the cheese we bought last year. 

Tomorrow I am getting my haircut. I wouldn’t be surprised if my hair ends up even shorter this time. It also gives me an excuse (not that I need one) to spend time with my family as they live near my hairdresser. I am planning on taking Walter to a lovely park near my parents house. 

This time last year things were very different for me. I was in the grip of severe anxiety and depression. Days were spent crying in my pyjamas, unable to leave the house. Christmas Day was awful. I can remember lying in bed crying, telling Dave that I couldn’t face the day. 

It’s easy to forget how far I have come when I am struggling. So here’s to Christmas 2015. I can guarantee that it will be better than Christmas 2014. 

Still moving forward

Yesterday I had an appointment with the crisis team. It went well. Dave came with me to help avoid any further upset since my assessment appointment was a dreadful experience. 

I expressed my reluctance to change my medication and that I overall felt more stable as a result of reducing my dosage of citalopram. My appointment was with the woman who carried out my assessment. She really needs to learn to not talk over me. It’s incredibly difficult to speak so openly and candidly about how I feel emotionally and mentally. It makes it ten times worse when you have a supposed medical professional repeatedly talking over you. 

The plan now is for me to do some work around my anxiety. Thankfully this will be with a different member of staff within the crisis team. At the moment there is a two – three week waiting list. After this work, I will be fast tracked back into the system to restart CBT. 

Work has been good. I have been going back to sleep for an hour or two when I get home from helping little miss get ready for school. This has helped massively. Yesterday evening little miss met Walter. She absolutely loves him! This morning little miss got upset. She wanted me to be working again tonight. In a short space of time she seems to be responding really well to me. 

I have Dom later which I am looking forward to. He loves taking Walter for a walk so I am hoping we will get to take him to the woods near where I live. He turns 13 in a few weeks and is extremely excited about it. 

Sense of achievement

Yesterday went really well. So much so that I ended up working again this morning. I am also working later on when the little miss gets home from school. 

It’s always a worry if you will get on with a child you’ll be supporting, especially when it’s a child with special needs. But little miss is fab. She tried to see how much she could get away with but it was nothing I couldn’t deal with. Today she got ready for school much quicker than yesterday. 

I am really tired from the early get ups. I am up for 5.50am as little miss has to be ready for 7.45am for the bus to pick her up for school. But once I get to little miss’s house the time flies by. 

I haven’t felt anxious or low in a few days. I am continuing on the lower 20mg dosage of Citalopram. Tomorrow morning I’m going to the gym. Dave and I are taking Walter out for the afternoon. On Sunday we are going to my parents for tea. 

I am so glad I took a chance with this job. It is really helping me feel a sense of achievement. I am not naive to think that my anxiety and depression are magically cured. But it does feel great that right now it doesn’t have so much of a hold on me.