My Wish for Autism Awareness Month…

I haven’t written for a while, and I apologise for that, life has been particularly busy.

Harry is doing really well, 14 years old, nearly six feet tall and still is as charming as ever!

But April is autism awareness month..and this gives me a pause for thought. Whilst Autism is getting more recognition than ever before, some parents still want more, and I don’t dispute that. Being in the job that I am in, I see families who have children with additional needs, all sorts of needs and they seem to struggle more and more, and my findings are, in the greater world that if you explain that your child has the autism label, the person nods, and accepts, even if they don’t fully don’t get it.

But those children with other ‘hidden’ conditions don’t seem to get the same recognition. Dyslexia for instance can affect the person’s working memory. A person without dyslexia still need time to process information, up to 7 secs to be exact, a person with Dyslexia can take up to seven times longer and their brain can be like a filing cabinet and you have to go through all the files, to find what they need. Or ADHD, do people fully get that or dyscalculia.

So my wish for autism awareness month, isn’t just autism awareness. The fact is we are in 2017 and parents are still asking for clubs that are specifically for disabled children. For me I find this infuriating. I run a fully inclusive guide group. It’s large for a guide group, 27 guides with over 50% that have additional needs. We have an understanding where the group helps one another to achieve and if one of the girls is unable to do a task, we all don’t do it, though we only choose tasks that we can all complete, even if we need help and support to achieve it. This raises awareness and confidence and self-esteem, this is what I want for everyone.

So I want awareness for everyone, those who need extra help to achieve their goals and dreams, we all have difficulties from time to time, so don’t we owe it to everyone to be kind to each other, despite a label?

Resilience-a word not used often enough…

In my work as a parent Carer representative and as a SEN TA and even as a care worker for young people in the care system, we are not using this word enough in our day to day living.

Even in my personal life I see families and children and young people who when life gets a little tough or they don’t get what they want, they collapse and breakdown. They can’t cope. 

Most of these individuals wouldn’t have anything wrong with them necessarily either, but we are not teaching them that life at times can suck. And when it does, we have to say, it’s fine to wallow for a short while, but then you need to pick yourself up, dust yourself off and choose a different route to your destination. 

Life is a journey, it forever evolves but my not teaching resilience in children and young people, we are opening the mental health can of worms. 

There is already a rise on those using mental health services and don’t get me wrong not everything is down to resilience, but I think some of it is. High expectations and undue pressure that people, parents and the young people place on themselves has to stop. Otherwise the complaints for waiting times on these services will be a lot worse than the 180 days quoted in the press. 

This is all without a mention about Social Emotional Mental Health, well just about. 

A Word nightmare or dream? 

There’s a programme being shown on the bbc at the moment called The A Word. And it’s caused mixed reactions from the autism community. 

I do understand their sometimes resentment and the excitement that this programme is bringing. 

On the one hand it’s raising awareness for the condition, but on the other hand the family in the drama got their child’s diagnosis at the drop of a hat, when in fact the average time frame for an ASC diagnosis in the UK is actually 5 years. So this fact alone is not helpful and it’s not helping those who struggle everyday. 

It took us 4 years to get a diagnosis for Harry. And we are glad that we stuck it out for the term. But there are other families who wait longer and there are some who give up under the pressure. 

So I am glad that they have produced it and even happier that they are showing it during Autism Awareness month and no matter what, it is getting people talking about autism and THAT has to be the best thing about it. 

But don’t forget, it is a BBC drama after all, not a documentary. 

So much to ask…

It’s been a while since I posted and I am sorry about that. But life has been busy and dare I say it good. 

Today seemed like a good day to share our update as tomorrow is Autism Awareness day and April is Autism Awareness month. 

Harry is doing well. Although still struggling putting pen to paper he is making good progress in school and his parents evening recently, there was not a bad word said about my lovely boy. This is more important to me as a mother than anything. 

In recent weeks, we’ve looked at colleges for my daughter, you can’t help but think about what Harry’s options will be, but one thing is for certain, I can see more options for him, than what we thought we had even a year ago. 

The world it seems is more aware of autism, and for that I am glad, but more work needs to be done. This isn’t finished. 

We need a world that is more aware of all conditions. To make those who suffer from them feel valued. Not pin everything onto academic achievement. To know that they do a good job and even support them to get a job. To give them a chance to shine. 

I love Harry. I am also a positive person and a supportive parent, but even Harry has surprised me with all of his achievements. Why can’t the world take the time to see them too. To celebrate them. 

With this autism awareness month I want the world to be aware of all people, who find life in general a struggle, to feel accepted. Autism is a combination of lots of different things amalgamated into one, that’s what makes it a spectrum condition, but that is like so many other conditions. 

I want Harry and those like him not to fear leaving the house on their own or to turn their face when they are approached by  a group of loud teenagers, in case they make comments. To not feel rushed when they are trying to pay for groceries or for people to be polite when they want to talk about something important to them, even if it wasn’t part of the original conversation. To be more accepting of mental illness and wellbeing, because this will give us better adults with more self worth. 

I know it seems I’m asking a lot but I truly believe we will make this world better. 

Here’s Dolly!

Two weeks ago we took the decision to adopt a dog called Dolly. This was something that the children and I had wanted for years and after our 18 year old cat, who had been my Husbands only excuse for not getting one, had died, the yearning and pestering had stepped up a gear!

So my Husband was visiting a dog’s home. They usually deal with just staffies or rottweilers, not what we wanted but on this particular day, they had a cute collie x jack russell called Dolly. He immediately called me to tell me he had seen her, fell in love with her and that we can go and have a look at her, which we did.

So on a Sunday afternoon, we drove to the dog’s home. The man who runs the home, warned me of the immediate love I would feel for this bounding bundle of joy and I was skeptical. But there we all were as he released her from her kennel and boy was he right! Out bounded this miniature collie who jumped into my lap and licked me on the face and did the same to every member of the family, how could we refuse her.

So it’s been two weeks since we brought her home and we can’t imagine life without her. We are grateful for her, she’s brought a light and life to this family at a time when life has been difficult for everyone in this family.

2015 has been a difficult year, but with Dolly there is hope. Harry interacts with everyone a lot more and is mindful of Dolly’s needs. He comes home from school and takes her for walks, something he would never do EVER!

I had heard that dogs have a positive impact on those with Autism and some have their pets trained by organisations such as PAWS or apply for a dog to help with specific needs click here for more info.

So if you’re toying with idea and have been doing so for a while, do it!

I never thought in a million years that a four-legged friend would ever create this much positive change in a family ever. We are fortunate in her excellent temperament but she is amazing and we extremely lucky to have found her!

dolly

So much has happened…..what a ride!

The summer seems such a distant past, time has flown so quickly, and with Harry approaching his 13th birthday.

Yep that’s right I will officially have another teenager in the house later on this week. So it has made me reflect on where we have come, and believe me, we have come further than what we could have imagined.

At the start of the summer, we had successfully negotiated his first year in secondary school, with very little problems. I almost have to pinch myself when I think at how well it’s gone and to think I was thinking that the only school for him was a specialist provision school. He really is doing ok at a mainstream secondary school.

We then were away at the children’s autism outreach camp. Meeting other like minded parents really does make a difference. Leaving Harry to chill one afternoon, in the caravan, to then for him to go ‘missing’ then panic ensued, as when I checked on him 10 minutes after I left him. A quick search of the caravan site and I found him, playing with some children that were supporting their siblings at camp. They went to school with him, he was playing football with them, how amazing was that, how could I tell him off? I didn’t, I just stood there immensely proud watching him play with other children. He was unaware of the adrenaline rush that he had must given me, he just looked up and waved.

Whilst away on camp, we heard some devastating news. Shannon’s best friend tragically died unexpectedly at the age of 14 years. Harry was superb and gave the space that Shannon needed to grieve.

We then had a whirlwind break in Cornwall, before school then started.

So year 8 has now begun and it’s going well. H sometimes struggles with the usual teenage stuff. Girls are interested, much to his horror, and boys are using that to their advantage, but keeping Harry in control and dealing with it as it happens is keeping his anxiety down. I am fortunate in that he does tell me. He acts differently and he ‘bounces’ which is often a sign, so eventually we get to the bottom of it, that we are really grateful for and the school have his best interests at heart.

So we are excited to be approaching the teenage milestone this week. My boy has come a long way, but wow what a ride!

On reflection…hindsight, is it a beautiful thing?

We so concentrate on wishing that we have hindsight. It would be a wonderous thing, to be able to foresee things that are about to happen, but where is the adventure in that!

My thoughts have been have been a little deep of late, perhaps because lots has happened, some were planned, other things evolved, but thats life. I certainly wouldn’t  want it any other way. Time hop is an amazing app that’s available through various means and it can be great to look back on.

So halfway through what has been a mad few weeks, my time hop reminded me what I had posted on Facebook 3 years ago. Three years ago this week we had our thoughts of Harry confirmed that he did have Aspergers. We hadn’t banked on his hyper-sensory disorder actually causing us the most grief at times, but it was a relief and we got a piece of paper saying what we (us as parents and the school) had thought. We were able to move forward, getting the help that Harry needed. It wasn’t an easy ride. 4 years from start to finish in all with tears being cried and huge amounts of coffee being drunk as well as lots of glasses of wine, as it’s important to get away from the whole diagnosis situation as it becomes part of your entire life if you let it.  And whilst for some, the label isn’t what some parents want, for us it worked. On first sight Harry appears to have mild aspergers, and most of the time thats true, but mix it in with his sensory difficulties and his severe dyslexia you have a child, who is described by professionals as complex.

So with this in mind, it has put me in a reflective mood. It’s made me think, how amazing he is.

When you first have your piece of paper confirming the diagnosis, there is relief. But it’s quickly replaced by grief. Sounds vey melodramatic, but you do start thinking about your childs future. Will he marry, will he be able to get through school, will he have a relationship, will he get a job. A friend who doesn’t have a child with learning difficulties, said it’s almost that you a bereft for the life that you had hoped for. Well I’m here to tell you that hindsight would never have predicted what we are going through right now. Harry’s school gets him. They are doing everything they possibly can on the shoestring of extra funding that Harry receives. It is worth the extra 20 mile round trip in the morning. He slept overnight in a forest last week, with his forest school. Next week he’s off to camp. He has never slept in a proper tent, and he is embraciing this!!

It’s been three weeks since my niece has had her hip replacement and my husband’s broken leg has almost healed and has another week off work, but Harry has handled it all very well. His new smart tv and I’ve finally got his new bedding with blackout curtains, his room now looks very grown up. As my daugher kindly told me this week, my little boy has now gone and has been replaced by a teenager, which he is in October. I’m extremely  proud of how far he has come. And even with hindsight we would have not predicted this, so sometimes you have to let life evolve. Take up opportunities of help and support and enjoy the ride!