The month of April is best known for
the explosion of Easter Bunnies, obscene amounts of chocolate as gifts for
children and a magnificent feast to celebrate the resurrection of Christ. To
many people April is Easter, They plan, they organise, many months in advance
sometimes, Children have the time of their lives, gorging on chocolate,
receiving gifts from extended family members, but to me, April is Autism
Awareness month.
So to celebrate this, I am going to
dedicate my blog for a whole month to families who wish to share their Autism
Journey with you. Some of these people have autism themselves, some are
autistic parents to autistic children. We have teachers with autistic students
and even Bloggers who want share their journey with me, which I am very
grateful for.
This heart felt account was written by an
anonymous mum, struggling with her thoughts and feelings and battling the urge
to want to join in and be normal whilst knowing that it will never work out the
way she imagines in her head, wrote this heartfelt account. That all too
familiar feeling of being ignored by professionals and the gap between her and
her friends widening as her son struggles with social situations and becoming
reliant on the safety of home.
Autism or just naughty?
I have gone through today
with this massive headache and thinking am I just imagining all of this. Is my
boy ‘normal’ or are there actual issues?
I read an email from a
support worker who is obviously writing from a textbook.
I just think at the minute
it’s me, my parenting, as all I seem to hear from people is to just allow
natural consequences - but what they are not hearing is I’m not on about the - let him
get his feet wet he will eventually learn - I’m on about the more serious
stuff, like –“I want to run on the road’ - I can’t allow that and I can’t allow
a natural consequence – ‘oh sorry you
were hit by a car you must now learn not to run in the road’
I’m totally confused at how
these support workers talk to you like hello I’m not totally stupid! But
where do you draw a line and say
“Hang on my child is not text
book.”
I’m reaching out here but
none of them are listening. Its such a lonely world.
I let him run on the beaten
track with his friends but then he starts playing in the water (wet feet I can
accept) but then the water is deep and he can’t swim and he doesn’t realise.
'Oh you carry on its a natural
consequence'
It all sounds a bit
patronising to be honest, and I feel totally fed up with people thinking they know
your child better than yourself.
Totally lost at the minute
and so confused through all of this
That blindness to the extent
of what he has been through, the pillar that has kept us together he is the
strength, that willingness to accept how he is, grow into his own person, face
demons I know nothing about, face obstacles we never thought existed, facing
that judgemental opinionated person who has absolutely no idea of how hard it
is just to get dressed or as simple as eating a meal.
Well done to all the amazing people out there
that do have an understanding, you’re my friends and will always have a place
in my heart as you make my days so much easier.
I’m starting to really let
this affect my mind and how I see things.
Regular hospital visits,
poorly child all taking its toll.
When your child doesn’t want
to go out or do anything, half term and holidays can seem so drawn out and
mentally hard.
I watch him interacting with
his computer games and enjoying being in the safe surroundings of his home.
While wondering lets get outside lets go to the park or the beach.
“NO that’s not what I want to
do mummy I just want to stay here.”
REALLY!!
I cannot get around the fact
he doesn’t want to go anywhere or do anything, my home has become a prison in
itself. The days are long the nights even longer and they all merge into one.
“Lets go swimming” “no I hate that” “lets go watch a film” “NO”
The lists are endless.
So we stay in doors surrounded by these four
walls which offer nothing more than yesterday. I watch and as my friends go to
the woods and meet up with other mums to do fun things with their children and
it breaks my heart, we become forgotten friends for a while, and the distance
is getting bigger between us as they know not to even invite any more, and I
wonder if only we could get out he would love it.
Giving him a choice is wrong, some people say “just
take him out” but then I’m faced with heart wrenching battle where ever we go,
he runs and fights and screams at me. Refuses to move or walk any where, So
what’s the better option.
I would do
anything to enjoy the simple things in life of going for a walk, going to the
park but they seem like they will never come.
Thank you so much to this wonderful mum for sharing such an honest account of the thoughts and feelings that many parents of autistic children feel. I know that I once felt like this too, and i know that there are probably thousands of parents out there still feeling like this, but you're not alone, and you will gain strength and get stronger, and things will get easier. I hope this mum and her son are in a much better, calmer and organised place now.
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