So ….

April Awareness has moved over into May also.

So, as I have shared, I have two official diagnoses, my sons, and one unofficial diagnoses, my husband.

And I prefer to focus on the good side of this. The quirks, the funny stories. Very few peeps get to hear about the tears I have cried, the fears I have, the loneliness I feel at times.

So…. I want to talk about the harder side of living with those on the Spectrum through the eyes of me a nuero ~typical. (non~autistic)

I live in a household that is intellectually stimulating, where facts and figures are discussed at length. I have a son who loves formulae, languages, music. Anything with order, method. I have another son who is all about building structure, doing… in a particular way.

When you talk about order and routine, think about having to do things EXACTLY the same EVERYDAY, or else it ends in a meltdown. Not a tantrum, a meltdown. The scary, OMG, I am really freaked out right now kind of melt down. Not the ‘Give me my own way you cow of a mother’ tantrum. The ‘I can’t cope coz you changed things’ meltdown. OK, so it’s not like that so frequently, we have moved forward. But imagine having to make sure things are the same, and that when change is needed having to work out how you can introduce this without fuss.

Imagine walking on eggshells. Imagine being a really touchy feelie person and having a little one SCREAM ‘You are hurting me’ when ever you touch them. In the street. Where people can see.

Imagine asking for help, and being told you needed to have routine and consistency in your child’s life. (um hello)

The path we have walked when the boys were little was a very lonely one. We reached out to people and found no support, emotional or physical. Just twisted spiritual principles. It was all very tiring and draining.

I did not expect special treatment, just acceptance and understanding. And when we did not receive it, we closed off. We became very insular.

Now it is different. We have a small but special group of people we call friends. We have found caring, understanding and acceptance. That helps.

I currently do not have too many concerns for Celtic Lad’s future. He is teachable, He learns and adapts quickly. As long as her gets his quiet time on the trampoline, he is fine.

I still worry for Celtic Dingo. I walk a tightrope with him. Yet, all of a sudden, we get a breakthrough and it will be like 180 degree turnaround.

This week, I had four days where he didn’t yell at me once !!!! It was amazing. He is one frustrated child. And it manifests in that he has a constant sore stomach. On those four days where he didn’t yell, he did not complain ONCE of a sore tummy. I know he yells because he suffers a lot of anxiety. I have spent 8.5 years of him screaming/yelling. I remember when I was first told I needed to be FIRMER. A quiet voice would say to me ‘A gentle word turns away wrath.’ Being firmer didn’t work, made it worse. Being gentle helped the situation, but did not change the behaviour. But then he was not in a position to be reasoned with either. And I am aware that developmentally, he may have moved on and then the behaviour becomes habit. I think my son is in a place where if we reason long enough and hard enough with him, he will get it. It just takes time. But to be honest, all the yelling and frustration leaves me feeling like a battered mother. And sometimes I have yelled back, which really helps…NOT !!!! I no longer beat myself up about that. It is what it is, and I just keep hoping for the day it changes.

Statisically, I am told, my boys are high risk. High risk for getting into the wrong crowd, taking drugs, depression and even suicide. I have read all the frightening stuff. So I consider what I am doing as fighting for their lives. While, I see we have much more awareness of autism, I do not see we have more support or acceptance.

This thought drives me and inspires me. I am the little Hen who could.

Being the partner of someone on the spectrum brings an interesting dynamic to the relationship. I call Mr Shamrock my biggest kid. lol. Because he is !!!!! But the thing I like most about him, as with the boys, is their ‘pure’ view on life. Very simple, very basic, black and white. There is a belief system which regards autistics as the crystal children, a level which is more spiritually sensitive that those who aren’t. While this doesn’t fully connect with my spirituality and I see holes in some of the thinking, I agree with the basic principle.

When living with autism, it consumes the whole household. To function effectively, we need to function ALL as autistics. This is what can be tiring and draining for me. I am not on the Spectrum. So I kind of function on 2 levels, it is like constantly speaking two different languages and having to translate. In the same way, those on the Spectrum are expected to behave and think like those who are not in their everyday living, so I regard our home as their sanctuary or safe place, where they do not have to pretend. ANYONE who has not got it, laughed, or commented do not get invited back.

I have shared before that I have burned out and am currently medicated. I am slowly regaining my energy levels and feeling holistically balanced for longer than 1/2 hour at a time. In fact, I am at the point where I have 2 or 3 good days before I crash.

It has been a long road. It is by no means over. But if given the chance to start over, I would do it all again. The positives far outweigh the negatives.