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. 

Proud

Until yesterday, it had been years since Dom and I have been the cinema. I think the last time we went, Dom must have only been about 10 or 11. He found it so challenging and it wasn’t an enjoyable experience for him. 

Since finding out about Finding Dory coming out during the summer holiday, Dom has expressed interest in seeing it. A few weeks ago, he asked if we could go and see it and of course I said yes! 

Dom has been so excited about Finding Dory. When I arrived to pick him up yesterday, he couldn’t wait to go the cinema! Dom has an iPod touch which he absolutely loves. He said that he wanted to leave this in the car. This was a big step. Dom has ADHD and Autism and his iPod helps in a number of ways. It allows him something to do when he is bored and a way of coping with his anxiety. 

Dom moaned during the adverts and trailers (can’t say I blame him!) But I used humour to help distract him. I wish I could have filmed Dom’s reactions when watching the film. It was lovely to see. He had a big grin on his face and laughed countless times. He sat through the entire film and commented on how much he enjoyed it. 

One of my biggest concerns about Dom was his lack of intrinsic motivation. Since baking a cake for my birthday, Dom has asked if we can start cooking tea at my house. So next week, we are going to make our own pizza and chocolate flapjacks. This is the young man who was an extremely fussy little boy who went through a phase of only eating in McDonalds when out with me. 

Being able to see firsthand how much progress Dom has made is one of the most rewarding things for me. It seems I am guilty of underestimating Dom. I hope he continues to prove me wrong 🙂

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.

 

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. 

Wedding Success

I had mentioned in earlier posts that I would be supporting Dom at his Mum’s wedding. It was on Friday and Dom exceeded everyone’s expectations.

When I went to pick Dom up from his Dad’s house on Friday morning he was so excited about the wedding. He couldn’t wait to get changed into his suit and to wait at his Mum’s for the wedding cars. When I first saw Dom in his suit I got a lump in my throat. He has real sensory sensitivities with clothes; he hates wearing jeans and shoes with laces. Yet he managed to wear a bow tie all day, his morning suit jacket until the wedding breakfast and his shoes until the start of the evening part of the wedding. 

Dom loved talking to all his family and friends of his Mum when he arrived at the church. He was incredibly sociable for most of the day. I could tell when he was getting tired as he frequently asked me if I would sit outside the venue with him and didn’t really have the energy to talk to anyone. He was able to tell me that he was tired and wanted to go back to his Dad’s. I love how self aware he is becoming. 

During the months leading up to the wedding, Dom insisted that he would not be sitting in church for the wedding ceremony. The plan was for Dom to walk down the aisle with his niece (flower girl) and nephew (page boy) and he would then wait outside with me during the ceremony.

Dom sat in the church for the entire service and saw his Mum get married! I had a Mary Poppins-esque bag full of things to help Dom remain calm and address his sensory needs. Favourites of the day included a bendy man and a small kaleidoscope 🙂 When Dom saw his Mum outside the church before walking down the aisle he told her that she looked beautiful. He also whispered to me, “this is the best day ever!” when we were in church. 

With any wedding there is a lot of waiting round; especially when you are part of the wedding party. Dom coped so well with this. I was able to distract him with humour or talking about Katy Perry (yep, Dom is back into her music in a big way!) Dom loves his food and becomes quite irritable when hungry. My bag of tricks proved useful when waiting for the food to be brought out when we were sat down during the wedding party. My small tin of magnetic beads were a big hit!

Another thing Dom repeatedly told me during the build up to the wedding was that he would not be dancing. Well, he danced and he loved it. His Mum and Step Dad had one of those light up dance floors and Dom absolutely loved it! Combine this with him asking the DJ to play Katy Perry and it was a truly winning combination for him!

Before Dom’s Mum and Step Dad had their first dance, they got up to say thank you to particular individuals. One of them was me. Dom’s Mum told the entire room that they don’t thank me enough, that they don’t know what they would have done as a family without me and that they love me loads. I was also given this lovely bunch of flowers:

  
I was understandably emotional over this thoughtful gesture. Throughout the day a number of people came over to tell me how much progress Dom had made since I had become his personal assistant. According to his family, Dom is now more sociable, talkative and generally much more settled. I was told how much of a good job I am doing and hugged. 

Of course it is nice to be given recognition for doing something well. But I don’t work with Dom for the praise. I am his personal assistant to help him and it is a privilege. 

Autism and expectations

Recently Dominic has made so much progress. It is truly wonderful to see. 

When I heard about the accident that happened on The Smiler at Alton Towers, I instantly thought of Dominic. He is a massive thrill seeker and loves going to Alton Towers. Guess which ride is his favourite there? Yep, The Smiler. Rollercoasters are a big deal to Dominic. 

I prepared myself for 3 hours of Dominic talking and asking me questions about The Smiler. I was pleasantly surprised. The conversation went as follows:

Dominic – Did you hear about the accident on The Smiler?

Me – Yes

Dominic – I feel sorry for all those people who were hurt

This conversation astounded me for a number of reasons. Dominic loves to talk about everything and anything to do with his special interests. To show empathy towards people he does not know is a big deal. The fact he had a brief conversation and then changed the subject is also a big step for Dominic. 

As Dominic has got older he has become much more self aware. I know that he was prone to being violent towards others when he was angry as a young child. He would never talk to me about this or indeed anything to do with how he feels. 

This evening Dominic started a conversation about when he went to live with his Dad full time four years ago. At this time, Dominic was extremely volatile. I wish I could have filmed the conversation tonight. He talked about how he used to ‘kick off’ (his words) a lot for his Mum. He gave me some examples – at an aquarium and in the park. He then went on to say that because he kicked off a lot he went to live with his Dad and this was better. Dominic said that he doesn’t kick off anymore but he does get angry still. He gave me a recent example of this in school; he felt angry as another child had hit him and he wanted to hit him back. This is another example of the progress Dominic has made; he now talks to me about what has bothered him in school. 

I talked with him about how everyone gets angry. I said that I have a list on my phone of things that help me when I am angry. This is actually the list I made as a result of a CBT session to help with my anxiety and low moods. I showed Dominic this list and we talked about the things that he could do when he is angry. He then started making his own list on his iPod touch there and then!

We ended the evening seeing Walter at my house. Dominic opens up a lot when he is with Walter. He talked about how he doesn’t like getting homework. This is common with child on the autistic spectrum. School is school; home is home. Homework blurs these lines. Dominic will not even attend after school clubs that he would probably enjoy because of this. Eventually he came up with a solution to the homework problem…to do his homework at my house on Wednesdays!!! 

I love how Dominic continues to exceed my high expectations of him. He constantly gives me hope that he will achieve his full potential. I really hope that I will always be in Dominic’s life in some capacity. A lot of people have said they couldn’t work with children like Dominic. They don’t have the patience and it sounds so selfless are just some of the things I am told. I get a great deal from taking Dominic out; he makes me see the world in a completely different way and I constantly laugh and smile when I am with him.