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 🙂

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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.

 

Happy 13th Birthday

A big Happy 13th Birthday to Dominic, one of my favourite people. 

For the past four years I have been lucky enough to be your “support worker” as you refer to me. It is an honour and privilege that I get to help you reach your full potential. You have shown that those with Autism and ADHD can make progress. It’s hard to believe you are now a teenager. It feels like just yesterday that you were 8 years old; when you were terrified of dogs and fireworks, struggled with changes and resistant to trying new things. 

Love your hugely proud support worker x

Faith in humanity restored

As Dom’s school was closed for teacher training today I took him out today rather than Wednesday. We had planned beforehand that we would go to Pizza Hut for lunch. 

Dom and I spend a lot of time eating in a variety of restaurants. I have come across a range of staff working in these places; from staff that are unsure how to take Dom or are just plain rude to staff that go the extra mile for him. 

Today we had the nicest waitress named Holly. For a start, she actually interacted with Dom directly instead of doing so through me. She tried really hard to play Birthday by Katy Perry when Dominic asked. During a visit to Pizza Hut in the summer holidays this song came on. Holly even tried to get it played on her phone on youtube and hook it up to the speakers in Pizza Hut. Unfortunately, her manager told her she couldn’t. 

I thanked Holly before we left. I said that Dom has autism and ADHD and that most people aren’t as patient or considerate with him. 

So if I were to email or send a letter to Holly I would send the following:

Dear Holly,

Today you were our waitress in Pizza Hut. The restaurant became increasingly busy during our time there. Yet you made Dom and I feel welcome. 

I really appreciate you trying to play Katy Perry’s Birthday at Dom’s request. Thank you so much for taking the time to explain to Dom the reason why the song couldn’t be played. 

Even when the restaurant was busy you took the time to show Dom where the icecream factory was. I encourage Dom to make requests himself in restaurants. Yet staff frequently talk to me rather than Dom. 

Finally, thank you for engaging in conversation with about his interests. He talked about you for the rest of our time together. This is a sure sign that you had made such a good impression with him. Dom wants to return to Pizza Hut during the October half term in the hopes of seeing you again. 

From Gemma, Dom’s personal assistant for the past four years. 

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.