Riding the Rollercoaster: Being a parent of a High Functioning Autistic child, the unexpected emotions 

Meet Zachary.

 He is three years and nine months old. He has Autism Spectrum Disorder and he is Awesome. 

Look at that cheeky face 

When Zachary received his diagnosis we were not told if he was high or low functioning. The peadiatrian explained he could be high in one area and low in another so they don’t like to label. Now whether that is her personal preference I do not know as I know people who have been told High or low functioning. 

Anyway, we tend to refer to Zachary as ‘High Functioning’ or HF.  This is mainly for two reasons. One for me to remember that he does have autism, but it doesn’t mean he can’t fly high. The other reason is I believe it allows others to have higher expectations of him, whilst still understanding his difficulties. Now I am not writing this to cause offence to anyone who’s child may be considered low functioning. We just have different things to cope with. We are all still able to help bring awareness to autism. 

Now what I wanted to talk about is the emotional rollercoaster that many parents go through after a diagnosis. This is my story, but I know there are many others who can relate. I have known there was something a little different about Zachary since he was 10 months old. He had random behaviours, strange relationships and started suffering with night terrors. As I mentioned in a previous post Katie Hopkins #bornnaughty? I fought really hard to get Zachary’s Diagnosis, because I wanted him to have as much support as was possible to ensure we could get the best results and know we had done everything we could to help him. 

Even though I knew something was different and by age two I was almost certain it was autism this was my reaction. 

 
I cried. 

I also laughed, hysterically. 

You can read a little about our journey and my reaction in My FIRST ever blog post. Now even though I ‘knew’ Zachary was on the spectrum, it was still a shock. It’s something you are never really ready to hear. I had heard people talk about mourning the child they had lost. Even though their child was still here. They weren’t the child they had planned for. There were more problems and barriers that they hadn’t prepared for. It sounds a little dramatic we haven’t actually lost our child, but it can sometimes feel like that. 

My friend Featured a great Poem on her blog Nedintheclouds called Welcome to Holland. This poem often helps parents and others involved in a child’s life. It can help us come to terms with what we planned and where we are. It can help us feel less alone whether it’s due to Autism or another condition. It’s not for everyone but I definitely recommend that you read it. Also great for people who don’t have experience of it to read to try and gage how parents might be feeling. 

As I have said previously it can be like we have to go through a mourning process. Below I am going to show you how I feel I have/am going through this process. 

Shock and Denial

It wasn’t a shock really, deep, deep, deep, deep down in the pit of my stomach I knew. I had known for a long time. The denial kicks in at different intervals. 

“He made eye contact”

“He eats all foods and has a great diet” 

“He doesn’t mind if we change our routine”

“He can count to thirty and knows all his colours” 

I have said all of these sentences and they have all ended with “maybe he isn’t autistic, maybe he just has a language delay and a social delay, maybe he has the wrong diagnosis. It might be different things presenting as Autism Spectrum Disorder”

Anger

Anger comes in different forms. Anger at yourself, anger at autism, anger at society and even anger at the system. 

I remember feeling so angry at myself and telling myself that maybe it was my fault because…

  • I had a procedure on my kidney whilst pregnant
  • I had the flu shot whilst pregnant
  • I had antibiotics for 20 weeks of my pregnancy
  • I only Breastfed him for seven weeks
  • My husband and  trial separated for 6 months whilst he was a baby
  • I didn’t talk to him enough
  • I didn’t play with him enough

Those are all genuine reasons I told myself that I had caused Zachary to have the difficulties he does. I know it probably doesn’t seem logical, but when no one can tell you why. You try and find the answers yourself and the finger always point at yourself. 

Anger at autism is normally that you feel it has robbed your child and in turn yourself and your family of a ‘normal’ childhood experience. When it robs them of the ability to communicate and engage in ways we often take for granted. You feel angry and rightly so. 

Anger at society. You feel anger at the people who stare at you when your child has a meltdown. When people question why your almost 4 year old is still in nappies, when they get rude because the can’t answer the question “what’s your name?”. You get angry at the lack of understanding, the judgement and the lack of compassion. 

Anger at the system. I get angry that it’s not a fair system. It’s all about who you know and what they know. It angers my that there aren’t enough resources, that if you don’t ask the right questions you don’t get the right answers. That the bare minimum is all you receive. That early intervention is the buzz word, but funding is often cut or non existent. I feel angry that we are an exception who has managed to have a pretty good experience of the services available, but I feel angry I often feel guilty discussing it with other parents as they aren’t receiving the help that we are. I feel angry that the different departments don’t always communicate well.

If you have guessed I carry/carried a lot of anger. 

Depression and Detachment

The depression and the detachment comes when you think, it’s your fault. That your child would be better if they had someone else looking after them, someone more proactive, someone better with words. Someone who is confident in what they are asking for. Someone confident in the diagnosis. 

Sometimes you just say “screw it” and you decide to have a day where you aren’t going to treat them any different. Where you will just do what you want, when you want. That’s the day you makes excuses for them. 

“It’s common for children his age to still be in nappies and have absolutely no awareness of when he is going and to throw a paddy every time he needs a nappy change”

“It’s normal for children to mouth things, to be crouched down biting into his play kitchen whilst watching telly”

“It’s normal not to be able to have a conversation yet”

“It’s normal to dribble, to tiptoe walk, to tilt your head and walk in circles, to flex your fingers and jump and flap when excited”

You make excuses for their behaviours,  “Oh, he is tired” even though he napped an hour ago and has thrown himself on the floor screaming again. You make excuses, anything so you don’t have to admit it’s the Autism.

Dialogue and Bargaining

If I can just get him to stop this behaviour or teach him how to overcome this problem, maybe it won’t be autism. Maybe he will get better. 

•It will be better when he can talk•  it’s easier not better

•It will be better when he can follow simple instructions• it’s easier not better

It will be better when he has more understanding• it’s easier not better

It will be better when he knows social cues• it’s easier not better 

It’s a LIFELONG condition, it will get easier but it will never get better, it will never go away. Different individuals will have more or less needs in different areas, but even in the most High functioning people there will be traces, those tale-tale signs that this NEVER goes away. 

Now it’s the hard part.

Acceptance

Zachary has Autism Spectrum Disorder. I’ve said it and written it enough times that I have accepted it. Right?

Bullshit.

I keep saying it and writing it thinking it will make it an easier pill to swallow. Every time I think, this is it. I know it, I accept it, I fall back into one of the other stages, BUT I will get there some day. 

This picture shows the roller coaster of emotions I feel I have/am feeling. 

you often mourn the loss of the child you thought you were having

I feel I am slowly ready to begin exploring the things that aren’t so bad, to see the silver linings so to speak. I love how hard he loves, how excited he gets to see his favourite people. How intensely and passionately he feels. That he gets so excited he can not physically contain it. He has to jump and flap. His innocence. He isn’t bogged down with trying to fit the mould society had pre made for him. He is free to spread his wings and fly and be the angel he was meant to be. He is free, freer than most of us will ever be. This rollercoaster isn’t always fun, sometimes it makes you sick to your stomach, but when it is good it’s exhilarating

Thank you for reading

Cherrysnotmyname 🍒

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