A moment of honestly

As with so many other mummy’s who blog, I am torn whether to share this.  But I’m having a little bit of a low moment and I know I am not alone feeling like this, so I am going to spill from the heart for just a few minutes.

I truly love my boys, all three of them, so very much.  T and I met on day one of university and we have kind of been together ever since.  Uni friends may slightly disagree with this but that’s a whole different story and defiantly not one for this blog!

As everyone does, we had our dreams and plans.  We wanted a house of our own, successful careers that we both loved, a family of our own and a dog.  I defiantly wanted a family and sooner than T.  I certainly put the pressure on him and in the end he caved and we has C.  We both new life would change and that it never be the same again but neither of us had a clue quite how much things would change.

C was not an easy baby.  I am not even sure I could tell you why he was so hard.  As although only 5 years ago, after not having a full nights sleep since being about 7 months pregnant, my brain seems not to process quite as well as it once did.  Over the past few years during numerous appointments with doctors I have been asked about C’s development.  Was he late at doing this, did he do that, when did he starting doing this.  I have no idea.  This is not helpful in the assessment process.  But as a parent you learn to survive and just get on with things.  You get up, do what needs doing, remember, well sometimes remember what needs remembering and then you go to bed, and then do it all again tomorrow.  Fighting the many battles that get thrown your direction on the way.  Neither T and I planned this, no one dreams of this.  I think most people will think maybe the first 6 months of being a parent will be tough, even the first year but then it starts getting easier.  This is why we ended up having G two and half years after C as I new that if we didn’t, we might never have another baby.  I am so, so glad that we made that decision because I was right.  If we had left it another 6 months we would not have had another one!  This would have been a dreadful mistake!! It was a hard decision to make but absolutely the right one.  Although G is a little whirlwind we wouldn’t change that.  G is amazing with C. He still doesn’t always get when to get out the way, but he’s only 2.  I know he will always protect his big brother and be there keeping a close eye on him, and that is something ever parent wants for their children.

I look at other parents and I do have that horrid feeling of jealousy.  I hate that I do, and I get so cross at myself about it but I would be lying if I said I didn’t.  I would love to all be able to go out for lunch and get a pizza.  I would love to be able to take both boys swimming at the weekend, I would love to be able to have a day out at somewhere like Legoland.  I’d love to have friends over for lunch, even have C’s friends over to play.  But we can’t, it just does not work for this family.  This weekend we have not even managed to leave the house as a family and go to my parents, which is a whole 10 minutes down the road and C’s favourite place.  T and G have gone on their own, cross and sad that we aren’t all together, and I am at home with C who is watching the same programme over and over again on the Ipad.  I am feeling close to tears worrying about how everyone is coping or rather not coping with the day to day life of living with autism.  This family stuff is a whole lot harder than I ever imagined!

I often wonder if I would change anything.  Its a really hard question to answer.  I have read time and time again, parents saying they wouldn’t change a thing because that would mean changing their child.  This is why its such a hard question.  I completely love C but i don’t love autism.  We do have some amazing moments and I never take anything for granted.  I am still learning to live in the moment as I think it would help me stop worrying about what is waiting to jump out at me around the next corner, and to be honest I am not sure I will ever learn this, but I do keep trying.  Without question my marriage is stronger than it ever has been, and I know this because of the untold pressure T and I have been put under and yet we are still together.  We do still really struggle with things but we do a pretty good job of regrouping each evening when we are aloud.  This is something we have learnt is a must.  Having a child who still insists on sleeping in your bed the moment they wake up, which is any time from midnight and neither of us having managed a night away together without the children since C was born; trying to make time for each other is essential.  So back to that controversial question; would I change anything, the honest truth is yes.

I see on a daily basis how much C is affected.  I see him wanting to play with friends but needing to be so in control that people don’t really want to play with him.  I hate how he is judged by his behaviour that he cannot control.  I hate how its not safe to take your eyes off him for a second the minute we leave the house, so we end up limiting what we do do.  I hate how hard he finds life at times.  I hate how we as a family are affected and his little brother doesn’t get to do the things he would love to do.  Personally I would love to be able to go away for a night with T and just be able to be us again, but we can’t leave the boys with anyone.  I miss my friends who I never get to really see anymore.  I hate seeing how T gets so frustrated by the fact that he can’t play the sport he would love to because I can’t face him being away every Saturday.  And I hate the feeling of guilt that this gives me, I should be able to manage so he can have a life away from work and the four walls of our house.  I also hate how guilty I feel when I do meet a friend, even if only for an hour, because I end up leaving T to deal with everything.

Its horrid knowing your child could be happier if autism didn’t exist.  But saying all this, we can’t change anything.  There is no cure for autism; just acceptance and awareness.  Something to be honest this world has along way to go but with so many people fighting for better acceptance and awareness things can only get better.  We do manage.  We get up everyday and deal with whatever is thrown at us.  We both drink far to much coffee and wine, but we manage.  We have some amazing friends and family around us that do get it and support us.  However tough things get, we and them, will always be here for C and G so maybe life isn’t so shit.  Seriously tough and heartbreaking at times but we do have some awesome moments that would never happen without autism.

I am never out for people to feel sorry for us, I certainly do not want pity.  All I really ever ask is that people learn a little more about autism and be more accepting of it.  With 1 in every 68 children being autistic, and as these children grow up they will still be autistic; its something we need to embrace and all get our heads round.  As a mummy of a child with autism I am still getting my head around it, I am learning more about it each day; so its not an easy thing to do.  But its not like children and adults with autism aren’t all bloody amazing people; so it really shouldn’t be so hard.  We just need to stop trying to put everyone into the same box, stop trying to bang square pegs into round holes, accept everyone is different and it would really help everybody have a better life, autistic or not!!

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