Aspergers and how it really affects us as a family

Some people comment “It must be so difficult for you as a parent” My answer is always the same… “We’ll, I don’t really know any different”

You see, your born with Aspergers Syndrome and given little man is my first child it means I’ve been parenting a child on the autism spectrum for some 12 years now. It’s not like he suddenly got it and as a result everything had to change! You adjust from child free young women to mum and you adjust in the way that works for you and your child regardless of any condition or disability.

Ok, that doesn’t mean we don’t have difficult days… God only knows we do! But we have good days too.

The thing is, little man isn’t sick, his not got a disease but a condition. His a child that is very able he just struggles within certain areas of life but is able to learn skills to make these areas more comfortable.

There are some very difficult challenges that come from parenting my little man, the lack of sleep is most probably one of the hardest. But then so is watching him become extremely anxious and upset and being powerless to fix it.

I’ve mentioned before that for us the “label” isn’t an issue. It’s my opinion that many families need to acquire a formal diagnosis to open doors to services (that even then you have to battle to obtain them). Autism is a spectrum and although some families don’t feel the need to seek an official diagnosis, many others do.

A younger Little man with a younger Alice just before diagnosis

However, there are some downfalls of that diagnosis and that’s the way others suddenly treat your child. We found ourselves fighting a discrimination case that we brought against Little man’s old primary school as he was forever excluded, bullied, isolated and more. The good thing the label did do, was give us the grounds to bring a case and ultimately win it.

The truth is the official diagnosis helped us get little man the education and treatment programmes he needed! It didn’t change Little man, he was still the same little boy he was the day before diagnosis… Yes he had Aspergers he just didn’t have Aspergers on paper!

Little man with baby brother Harley now 2

In all honestly, life is much harder when your child has Aspergers but mainly because the system… It’s the system that needs fixing not the child.

Early intervention is extremely important as we all know. Nonetheless 18m to 2-year waiting lists to even see a child paediatrician is just diabolical! It’s in this space of time your child starts experiencing certain difficulties but has no access to the appropriate services! By the time he has the diagnosis the difficulties are now boarding on extreme yet your waiting another 18 months for an assessment for recommended treatment of appropriate programmes.

Little man’s siblings do often find things difficult especially Alice-Sara who has often experienced violence at the hands of her brother and his unpredictable behaviour. Yet, she has always been a sister to a brother with Aspergers and although this doesn’t make things different its still all she knows.

Another sibling war

We get on with things… We are presented with problems such as that above we tackle them and we keep on tacking them in till improvements are made. Sometimes these are made quicker than others.

I’d be lying If I said little man’s Aspergers didn’t affect us as a family… Of course it does! But life isn’t unbearable, it isn’t a total display of darkness. Days spent full of meltdowns and distress. Sometimes Aspergers doesn’t come into it! Not everything he does is down to an Aspergers trait, sometimes his just having an almost teenage moment and although behaviour can seem challenging its just that of being a child growing up and having a moment of hot headedness.

Aspergers is apart of little man but it doesn’t define every aspect of his personality and even when it does it doesn’t have to be in that of a bad way.

Aspergers makes little man more goal orientated and rule bound which can be an extremely beneficial trait for a young boy. He is passionate and honest (most of the time) and very intelligent in many areas.

Parenting little man has also made me change as a person. It’s introduced me to a whole new way of thinking. It’s given me drive and passion, opening my eyes to what it is I’m good at and what I want to do with my life.

It’s brought me here to this very blog, its got me writing, sharing something that’s important!

We’re happy and although somedays we may seem as though we are not! We are… We are happy!

I Just Want A Hug

I reach out my hand but you pull away, I open my arms and you flinch as if in pain, I open my heart up but you ignore to see the inner core of a heart that’s full of love for you.

Your first day at school you clung to me, arms wrapped so tightly around my neck I felt as though I couldn’t fully catch my breath… You did this for weeks, they blamed it on a detachment problem.

Then one day they just took you from my arms, carried you away while you kicked and punched as you screamed the word “Mummy” through your tears. Your tiny arm was stretched right out before me, your hand flapping up and down crying out for me to take a hold of it (something you never normally wanted). You wanted me to save you and I couldn’t. I cried but was told to toughen up, the tears wouldn’t help you.

“It will get easier” they kept on telling me, yet it didn’t every morning was the same as the one before.

I’d come to collect you, be stood in the playground waiting for you. Other mothers chatted and looked in my direction, some even made comments out loud that referred to me in some horrible way. I didn’t fit in but neither did you.

The bell rang out and as the doors swung open children darted out in all directions into the open arms of their parents. They stand staring as you appear from the doors, look at my open arms and ran the other way. Some could be heard whispering to one another, many laughed as I set chase running like some manic mother fearing her child may make it to the dangerous road outside.

By the time we reached home you were unstoppable, like a bull in a china shop you trashed about as you shouted and cried about everything and anything. I didn’t no what I should be doing to make things better for you, I wasn’t even sure of the issues you were upset about. I know now it was nothing precise, it wasn’t the fact we only had one biscuit, nor the fact I’d made pizza for dinner even though these were triggers, it was the underlying cause that was needing to be fixed. No… Not your Aspergers Syndrome, But your schooling.

We didn’t have an Aspergers diagnosis then… We had nothing but a load of court letters threatening court action for your school attendance that had now started to decrease. I’d try to get you there in the mornings but given you had not slept till 4am you’d wake with such anger. I was tired… You were tired! We didn’t need scare tactics what we needed was support.

Some almost 3 years and 2 court cases later you were diagnosed. I felt both relief and pain. You had been through so much and I’d failed to make them listen. I felt guilt for getting depression when the school just looked at me like some overprotective mother but at the same time some kind of shit one. I was screaming but no one could hear me, I now know that no one wanted to!

I felt resentful to a system that had failed to help me get the support we craved, to our british justice system who fined me what little pennies I had for your lack of school attendance… I felt guilty every Friday I saw my therapist and told him I felt like giving up.

There is a point to this post and for me a very important one…

Labelling isn’t always a bad thing it gives us answers, it gives a platform to start building on.

It wasn’t that my son refused to hug me because he disliked or loved me! It is because he is tactile defensive. Knowing that has helped, OT has helped and cuddles are now given once in a while (even if they are quick they are special all the same).

Without that label that many describe as wrong to give, my son wouldn’t have been able to attend the special school he does today. It’s pretty obvious now that my son’s autism traits such as hating change, poor social interaction and sensory processing were only part of the reason he feared the place he was expected by law to spend 6 and 1/2 hours of his day, 5 day a week attending. Bullying made up part of the fear which consequently, everything combined lead to what I now believe to be school phobia.

Without the label I’m scared at how life may have been today. Could I have found myself sectioned in a Psychiatric ward, I think quite possibly… Yes I could have! Where would that have left little man… Where would it have left his siblings?

Instead I started to get stronger and it was a bloody good job too. We had a lot of battles to come and I needed to be well enough to take them on.

I’m extremely passionate about advocating for families dealing with autism! It should always be understood that its not the diagnosis that is the problem but the carp that often comes with it! We do have to fight harder for what our children actually deserve, what is overly best for them. But to try and get any of these things without a label… Is like a dog chasing its tail in circles.

If your worried your child is on the autism spectrum, don’t let others make you feel bad for seeking your diagnosis. A label doesn’t have to be a bad move it can actually be a really positive one!

Where will you be in ten years time?

Where do you see yourself in ten years time? What is it you want from life? What are you aiming for?

What did you answer?

I remember being asked this question (a good few times in-fact) the one time that really stands out though, was being asked the above as part of a job interview. I was just eighteen at the time and pregnant with little man. Was I scared at the prospect of becoming a young mum? “I don’t really think I actually considered myself to be one at the time” , Though yes eighteen is very young and I would soon become a teenage mum, I felt excited for what lay ahead.

I knew what the interviewer was thinking, you could see it from the moment I walked in the door! I knew it was a waste of time, and though it wasn’t the best job in the world “Being a bingo assistant” It was a job, and when your on such a low-income with a baby on the way, you grab anything you can get.

So where did I see myself in ten years time & what was it I was aiming for?

*Giggle* “Mmm… a successful career woman, who was also a mummy to a few beautiful kiddies, a house covered in ivy that was picture perfect, my prince in toll and a few horses to make up the numbers!”

Of course I didn’t say this! No…. I rambled on about this & that, all the normal interview talk about climbing the ladder.… Blah-blah-blah.

Well, needless to say I didn’t get the job! Who wants to employ a young lady and her bump, who would be wanting maternity leave a few months down the line!

I’m now 28 years old and yep, its ten years later (I have the bags under my eyes to prove it) I may not have the complete picture perfect house in the country. I certainly don’t have the career! But I do have three beautiful children & do you know what? “I’ve discovered my passion! Raising awareness for autism spectrum disorders, campaigning for change! ” Who gives a horses *beep* about the ivy covered cottage with the high-flying career?

When I discovered little man had Aspergers I knew I had to search for every bit of info I could (No matter how small or insufficient it may seem) It was like stepping into a whole new world that was both amazing, yet heartbreaking. “What the hell is wrong with him” or another common one… “How can my own son act so emotionless towards his own mother?” How many parents of children on the spectrum have asked themselves that very question I wonder? Now I was beginning to understand why!!!

So many times I questioned things, so… many things: “Why would he ask for padlocks for his birthday? What’s with the tiptoe walking & the refusal to wear certain clothing? Does he really need to get naked as soon as we step through the door???? The thing is when a child is on the more “low functioning” end of the spectrum, it’s that bit clearer to the outside world that, “Yes this child doesn’t seem to be developing as they should be” With the child that is on the opposite end of that spectrum, the child who meets or even exceeds many of their developmental milestones, will not likely encounter such views!  I’m not saying those children who are said to be “Classic Autistic” have it easy, Hell no! These children are often seen as little toe-rags by many despite how profoundly autistic they maybe. There is no way of getting away from the ignorance of society. I’m merely saying that when your child has Aspergers, it can be hard to get those you need to listen to do so!

So… My point is ten years on, things are a lot different then I ever imagined! If you had asked me how I felt about having a child on the spectrum a few years back, you would have been greeted with a blubbering woman who couldn’t see a light at the end of the tunnel. A primary school who reported no problems, a mother & a father who endlessly thought up tactics & strategies to get our child into his bed of a night (Sleep is another matter all together) The need to give the never-ending reassurance little man required to lessen his anxieties… “Yes, daddy is fine, his not going to get hurt when his not with you” or “of course mummy will cross at the lights” Yet enduring his inappropriate use of language and insensitive remarks when he tells you, “GET OUT MY FACE MUM, YOU SPY, YOU BITCH!” The heartbreak you feel every time your child looks at you and tells you in the most serious of faces, “I DON’T CARE ABOUT YOU, I DON’T EVEN LIKE YOU”, worse still “I DON’T LOVE YOU” All the time there’s this little boy in there and something is making him feel so angry that his screaming inside, his sat on a step hands together asking.… “god, why is she doing this to me?” when you’re trying to be consistent in dealing with challenging behaviour. He goes into full meltdown, resulting in you “the parent” asking god that very same question that he did.. “GOD, WHY IS HE DOING THIS TO ME?” some six hours later, while sat in a crying heap on the floor.

No denying it! It’s one road that’s long and full of road works a long the way. But having that, “Label” somehow makes it so…. much easier. I’m not talking about public services (though this help) I’m talking about the change in yourself! Your now able to read, read, read.… because you have a focus, something to go on! With every page or website, new friend,  fellow parent you meet, you find an answer for one of them many questions you’ve asks yourself! Like most things in life the answer to a problem, ultimately gives you the solution needed to “mend it” & others well you turn them into positives… “Obsessive interest can become tools to engage the child in learning or used as a meaning full reward..e.g.” It’s no easy ride, and though I’m more confident in parenting my son, “more than I was before & in the early months following his diagnosis” I still find myself having one of them “Low” days, when ignorance bloody makes my blood boil & one more stupid, insensitive, dam right judgemental comments will push me off the edge of the cliff I’ve been stood on the entire day, week, or even month. “I’m used to it” I mean “ignorance” I spent too much time worrying about the probability that the shop assistant, teacher, parent…. would think his a “Brat” or “Devil child” (Yes his called this, comments referring to the three sixes on his head et.…) The worry about your parental skills being looked upon. I become sick of the worry and self loathing. Now I smile a cheesy smile. If I feel the need to explain a behaviour I will, but only because.… “I FEEL IT NEEDS TO BE ADDRESSED!”  Though things are so, so tough at present, with part-time schooling due to his complex needs in school, leading to constant exclusions, and the ongoing statutory assessments, I’m sane!! (Just about) and extremely happy and proud in broadcasting to the world that… I HAVE A CHILD WITH ASPERGERS & A LONG WITH HIS SISTER AND BABY BROTHER, I THINK HIS AMAZING & MY GOD I LOVE THAT LITTLE ASPIE MAN OF MINE!

This post has been linked to the awareness campaign:”All bloggers unite for Autism” created by Tammy over at Autism Learning Felt. Instead of  participating in the Autism communication shutdown that also takes place today, Tammy decided it was better to be heard then be silenced and therefore went about uniting all mum bloggers to blog about autism and contact the blogs together to form a chain of great articles and better autism awareness.

LOOK AT US NOW!

When i first heard that G was going to be assessed for ASD. I was both shocked and relived. If this is something you have just heard you maybe too. Once i had sorted everything out in my head the next step for me was to get educated on the subject and that’s what i did. I would advise anybody who has a newly diagnosed child of ASD or  those that think there  child could be on the spectrum should do this.

I found a great deal of information on the net. I also reed many books and spoke to other parents going though the same as me, my son and whole family. Once i started to research ASD i saw that things within the spectrum could be seen as gifts. There are many forms of autism some more high functioning then others. Aspergers is a condition on the higher end of the spectrum and Aspergers is the label given to G.

Once you know where your child is within the spectrum and you look at the reasons behind certain types of hard or unwanted behaviour you can then begin to avoid the upsets making your child’s life that little bit more easier. Ok not everything can be avoided certain sensory issues are hard to avoid but knowing what they are is a starting point. Lets not forget anybody within the spectrumof Autism sees the world some what differently from us.

There have been many times i have sat and cried but there are far more that i have smiled. When I’m on the net and i read forum post by parents of children with ASD and there so stressed angry and tired i think to myself that was me. Ok i’m not saying i never have them days anymore! I’m just saying it’s very rare i do. There is no cure for ASD i really don’t care what anybody has to say about that it’s just a fact’ But why would we want one anyway?

My point is before hearing your child had the condition they were the same child’ you loved them the same way you do now. The way i see it is your born with the condition the condition is what makes that child and your child is what makes the condition. If i asked for G not to have Aspergers that’s like me asking for a different child altogether. If you looked at us before and looked at us now! You would see how a understanding in Aspergers has helped in bringing me and my child so much closer. Don’t get me wrong we have always been close I’m close to both my children but G being close to me is different as it’s on his terms. Today it’s still on Giovanni’s terms but look and you will see he has opened up a little more as i understand him so much better.

My child is wonderful and yes my child has difficult times and yes he has at times got bad behaviour’ some non related to ASD as he is still human. But my child is who he is and i tell him never to be ashamed of that person.

Life doesn’t always have to be this hard there are many ways that we can make it easier for ourselves and children.