Tuesday, March 27, 2012

The hardest thing !

Being a mum is the hardest thing but harder much harder still is being a mum to someone on the Autism spectrum,I don't say a lot on my blog about it even though its the hugest most complicated part of my life. I don't say much because i am always aware of the feelings of my son Alex who has Aspergers and anxiety issues
He is 18 now and as in a lot of cases where there is a child with a problem i am a single mum.
Sometimes i would like to walk away but I am his mum and i Love him.
 He thinks (like a lot of teenagers and i should know i had 3 other sons before Alex) that i am the enemy and doesn't realize how easy it would be for me to let him roll himself into a cocoon and never come out.

We lead a complicated life that to others looks simple.We balance on a fine thread between my life in the real world and his life with its many many rules It is hard to explain to people who do not have a child on the Autism Spectrum.
Your  life is so totally taken up with it,
yes its been a roller coaster of epic proportions.It has contained sweetness and so many times laughter at unexpected things but it has contained pain and grief and an overwhelming sense of being on a runaway train.
To make sense of their world often people with Autism will make up rules to govern their lives.As in Alex's case this means if he went out yesterday nothing barring a national disaster will make him go out today.
His tastes in food are very bland but then he may take a shine to chilli chicken or something spicy. Don't ask him to eat potato- mashed baked boiled he cannot stand it, (or most fruits and vegetables) Don't put sauce on his food .Don't cook your food near his food.Don't use the vacumn cleaner too long the noise is too loud, Don't sing in the car ! Don't spring anything impromptu on him. Don't stop at the petrol station if it wasn't on the list when you left home. Don't tell him you want to leave at 12 and then try to go out at 11.45. Don't ,don't don't. Don't buy him new clothes and expect that he will try them on today  (or tomorrow or the next day). Don't promise something then get sick (getting sick is not an excuse to break any promise).And for goodness sake don't expect that he will respect your rules just because you follow his. There are many many rules .His rules may also change at anytime without warning yours may not.

Here is my rule Don't judge a parent who has a child on the spectrum. Don't think because you know a child on the spectrum that you know every child they are all different. Yes some will become Nasa scientists and some will never leave their room. Alex falls somewhere in between. And PLEASE , please don't tell me that god sends children like Alex to mothers like me cause we can take it because we are strong ( Or i just may have an Aspergers meltdown myself !)
We have been waiting for funding for him (6 months so far) to begin a transition to work program,3 days a week-it will be good for him and for me. It's been almost 2 years since he left school and my marriage broke up. In that two years i have been alone at home approximately 8 hours,I am really tired and i haven't had a holiday in long long time maybe 20 years,

Its a fine line we walk he and i and increasingly we are falling off the line and life is full of his anger and sadness.Look well to the future Alex you are more than the sum of your rules ,you are intelligent and funny and you just need to let people in to know you !  The hardest hardest thing is i cannot Hug my son on the spectrum ,He doesn't even like me to reach out and stroke his arm.The hardest thing is loving my son Alex but i do it every minute of every day and one day i hope he will know it in his heart and see that it is true !


vivian said...

so difficult. but You love him regardless. I dont know why God lets some children be so different and how he decides who gets who.. its all a mystery. Even if there seems to be no rewards for you here in this life time, there surely will be very special rewards for you and all the parents like you,in heaven. Parents who have persevered,loved, cried over,cared for and never given up on these children he created with these special needs will surely be honored in heaven for doing so.
Hang in there! I'm glad you shared this part of your life with us. Does your ex husband spend any time with Alex so that you can get some breaks?

Anonymous said...

I wish there was something wise & wonderful I could say but I can't. All I can say is this.... I am in awe that you are able to cope.
My prayers for your strength!!

Peace said...

I am sending you some virtual hugs and I hope Alex feels yours as well. Life is hard and unfair. I hope some good moments happen in your day to make up for that. <3

Laura said...

I get much the same reaction at having twins. When pregnant I received more condolances than congrats. It's maddening. I don't think we get these challenges because we're so strong. I think we're strong because of the challenges. What else can we (the mothers) do? They're our kids! We love them, so we do what it takes!
Hopefully his funding will come through soon to give you both a break - and to open his next life chapter!