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.

 

Square One

I had planned to try and go back to the gym tomorrow. The plan was to just go and do some weights with my friend. Yet, the thought of it has left me in a right state. I have decided that if I am still like this on Monday then I will make an appointment with my GP. 

I feel like I am going downhill at a rapid pace. I have told Dave that I don’t want to go out and do anything this weekend. I am only leaving the house for work. After helping Faith in the morning, I come home and go back to bed. 

It’s a vicious cycle. I find it overwhelming being around people, but deep down I know that isolating myself from the world is fuelling my anxiety and depression. 

I can’t wait for this darkness to lift. 

It’s still here

I haven’t been to the gym for nearly a week. The paranoid, self conscious part in my head is overwhelming. It gives me so many reasons to not bother going the gym. I know that retreating from the world makes my anxiety and depression worse. But it is so hard to find the strength to just get changed for the gym, let alone to actually go there. 

Being around people is draining. Yet I am not sleeping properly at night. My diet has gone to shit. My appetite isn’t great and I just eat whatever is easy rather than cook something nutritious. 

Coming to the end of my CBT has brought some horrible things that happened to me to come to the surface. Something I had repressed many years ago is in the forefront of my mind. I can’t think of anything that has happened for me to remember this event. But I do wonder if this is the root to a lot of the issues I have. 

I feel like an incredibly selfish person for being like this. Especially as my grandad is so ill. 

Dogfest, Arley Hall, 18.6.16

As a proud owner of a black and tan dachshund, my husband and I were more than happy to spend £28 on two tickets to Dogfest. What is dogfest you ask? It is exactly what it says – a festival for dogs. Set up by Noel Fitzpatrick, the guy known as the Supervet, it is a festival to celebrate all that is wonderful about dogs. 
We live a mere 30 minutes away from Arley Hall. We expected traffic due to the nature of the event. But we didn’t expect that it would take 3 hours to arrive at the event! Luckily, our dachshund Walter (named after Walter White from Breaking Bad) is so laidback. Apart from a few whines, he coped so well. It turns out that a steward directed us along with a load of other cars in the completely wrong direction! What followed was nothing short of chaos; complete standstill of traffic, cars making u-turns in narrow country roads and absolute no direction from staff from the event. 
We eventually arrived at the event at 12.30pm. We had missed the morning dog walk which annoyed my husband and I. We tried to get Walter to see a dog massager as they were offering a free assessment of your dog’s joints and muscles. But the queue didn’t move for a good 20 minutes. We went and got food and queued for ages. 
Walter loved meeting lots of dogs big and small; from Great Danes to fellow dachshunds. We got lots of lovely comments about him from loads of people. Staff at the stalls were friendly and happy to answer questions. We bought Walter some dog treats including some doggy brownie and scone. Being a little dog, we felt Walter would have been completely overtired if we had taken part in the 3pm Great Dog Walk. 


We are unsure if we would attend Dogfest again. The farce at the beginning of the day had us question a number of times whether or not to just go home. When we did arrive, we were unable to get anywhere near some stands we had planned to go to due to arriving much later than we anticipated. Although Walter really loved being round all the dogs, we could have had the same experience for him with our local dachshund group without the stress, expense and waste of time. 

I have set up an instagram account for Walter if any of you would like to follow it. Yes, I am one of those people who has an instagram account for their dog. But I take that many photos of it that it makes sense. 

Follow Walter @walterthesausagedog

It’s back

It has made a brief appearance over the past few months. I was able to deal with it. But this time, it feels like it has a tight hold of me. As the week has gone by, the black cloud of depression has grown bigger. 

I couldn’t face the gym today. The self concious, paranoid thoughts about the way I look are constantly there. Plus, I feel that the antidepressants I take have caused me to gain weight. I have been making a massive effort to eat well alongside the gym and it is not doing anything to help. 

I am tired all the time. I don’t want to be around people. I cried before work and after work yesterday. If I didn’t have to go to work later I wouldn’t. 

We are supposed to be going round to my mate’s for tea tomorrow. I really don’t want to go. But my anxiety tells me that I am letting people down and I will lose another friend. 

I don’t know what to do. 

Reality Check

For the past month or so I have been experiencing chest pains. I’m not one to go the doctors over the slightest thing. I hate to think that I am wasting time of an already stretched NHS. 

But this week it became even worse. The pain has been more intense and more frequent. I am stopping more during classes at the gym which is massively frustrating. It is a struggle to get enough oxygen into my lungs and my chest feels so sore. The past few days I have had intense heartburn and it hurts to swallow food. 

I managed to get a doctors appointment this morning. The GP I saw was lovely. He listened to me and checked my lungs, blood pressure and heart. He said that I The doctor said I have costochondritis which is inflammation of the cartilage that joins my ribs to my sternum. All I can do is take it easy at the gym and take ibuprofen. 

The main reason I ended up going the doctors is that my grandad has Oesophageal cancer. He had been experiencing the symptoms for around two years. On finding this out yesterday, it gave me a kick up the arse to get myself checked out. I am so grateful and relieved that it is nothing as life changing as what my grandad will have to go through. 

My lovely grandad will have to put on weight as he is malnourished from not being able to eat. He has to have a bit of chemo and then have an operation to remove the tumour. He will be in hospital for two weeks and will have more chemo after that. 

It breaks my heart to know what my grandad will go through. He is such a lovely, kind and caring man.  My grandad has been so positive about it all though and has accepted what lies ahead. So if he can accept it then I can too. 

Let people in

If there was one thing I would tell anyone who has anxiety or depression it is the three words above. 

I had such a good day with my friend yesterday. We shopped, we had coffee, we ate good food and we talked. Conversations were about everything and anything from the mundane to the serious.  At one point I briefly mentioned how ill I have been; not working, struggling to get out of bed each morning, being under the crisis team etc. 

My friend said she would never let me get to that point again. She used the phrase, “I would kick your arse if that happened again”.  This is exactly what I need. A friend who won’t let me stay at rock bottom but instead will listen and encourage me to keep going. 

It has taken me a long time to see the importance of letting people in. I was a firm believer in shutting myself off and not allowing others to know I was struggling. It was a sign of weakness to tell others that I wasn’t coping. But this doesn’t help. It just prolongs my mental suffering.

It’s important to know who you can let in. Mental illness can bring out the best and worst in those around you. I was convinced that I would never have good friends again. But I have some amazing friends. All because I opened up and let them in.