The things I try not to think about…

max at the park

I’ve been trying *not* to think about this since Max’s diagnosis, but it keeps popping up where it’s not wanted, so I figure maybe writing it out might help.

The thing is.

With autism.

Although Max is progressing *really* well.

(and when I really think of how much he’s come on in the last year, it’s just *amazing*!)

I can’t help but wonder…

what will he be like when he’s legally an adult?

What about when he hits puberty, and his hormones run riot?

Will I be able to take care of him?

Will he be with me for the rest of my life?

Will I have a toddler boy forever?

What if I can’t cope?

What then?

I don’t really like to think about it, funnily enough.

But it’s there in the back of my head.

Prodding at myΒ conscious.

Reminding me of the huge uncertainty of having a child with special needs.

*****

My mum always says to remember to look at the big picture.

But I think, for this one, perhaps it’s better just to enjoy the here and now.

The little details.

 

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32 Comments

  1. July 26, 2011 / 5:42 pm

    Yep, little details until you can only ignore them no more. They have to be in the social work system somewhere if they are going to have supported life outwith the home at all, and I’ve gone down that route now as I think its too late to leave it until they are passed to the adult disability team. You’ve still got a few more years you don’t have to worry about it all.

    x

  2. July 26, 2011 / 5:42 pm

    The “what-if’s” are so goddamn scary XXX

  3. July 26, 2011 / 5:57 pm

    I can’t imagine how tough the decisions ahead of you will be, and my heart goes out to you. And though your Mum’s right, that big picture changes everyday, so for the moment, being in the here-and-now sounds pretty good, I’d say.

  4. July 26, 2011 / 6:30 pm

    I don’t think I can say what I wanted to say much better than Mrs Turk has.

    xxx

  5. July 26, 2011 / 7:08 pm

    Yeah, I’m trying to just keep with the little bits… I know I’ve got a lot more to come though.
    *hugs* x

  6. July 26, 2011 / 7:08 pm

    Yes. Yes they are. :S

  7. July 26, 2011 / 7:09 pm

    Definitely. πŸ™‚ Thanks, sweety. xx

  8. July 26, 2011 / 7:09 pm

    *hugs* thanks honey xx

  9. July 27, 2011 / 7:57 am

    Totally agree with Barbara, Mrs Turks has very wise words.
    Sending hugs XXXX

  10. July 27, 2011 / 8:00 am

    As the years pass you will know more & be able to answer those questions. In the meantime – yes – don’t think about it too much!

  11. July 27, 2011 / 8:51 am

    I honestly think, though it will of course be difficult, with all the love and support Max gets from you and Zack (because from what you’ve said there is no doubt that Zack does love his brother and will support him), he will grow up with a few difficulties BUT he’ll have a much better time of it than a lot of people with autism. Because of you. I firmly believe that πŸ™‚

    You say yourself that he progresses a little every now and then and that is so brilliant. These are the little things that will keep you going, and keep Max progressing and improving. I know you can do it! πŸ˜€

  12. July 27, 2011 / 9:27 am

    Sometimes not thinking is just easier. xx

  13. July 27, 2011 / 11:03 am

    Thanks Ali. *hugs* right back at ya. xx

  14. July 27, 2011 / 11:03 am

    I think it’s for the best! Otherwise I won’t enjoy these years for worrying! πŸ™‚ x

  15. July 27, 2011 / 11:12 am

    Thank you soo much sweety. I know you’re right. Everyone has wobbles though, eh? πŸ™‚ *hugs* xx

  16. Oh Mammy
    July 27, 2011 / 11:19 am

    The what ifs will continue beyond adulthood. There’s no point in saying don’t think about it because you have to. I find it best to think in the short term, leaving the longer time until some gin is handy. Writing about it helps, or least it helps me. We’re in hormonal tween phase and although it’s stressful, it will pass. Xxx

  17. July 27, 2011 / 11:35 am

    I didn’t want to read and run, but really don’t know what to say. I can’t imagine what you must feel like when you think of these questions, I hope that you get some answers and some peace from them soon x

  18. July 27, 2011 / 11:41 am

    Definitely. *hugs* x

  19. July 27, 2011 / 8:40 pm

    Writing about it definitely helps.
    *hugs* xx

  20. July 27, 2011 / 8:43 pm

    Thanks, sweety. Just not reading and running makes a big difference. πŸ™‚ *hugs* x

  21. July 27, 2011 / 9:02 pm

    My friend has a 13 year old son who is autistic and dyspraxic. He’s also on growth hormones. She has the same anxieties as you. He’s an intelligent boy and gets high marks at school, but it’s his social skills that she’s worried about, and can’t get any help with, and god knows she tries hard enough.
    He is now able to put his bedding on after it’s been washed, and she’s teaching him to cook basic food stuffs. He can walk into town and order from Subway, which is an amazingly wonderful feat for him.
    My friend gently pushes his comfort zone by discussing and preparing before the actual ‘task’ in hand.
    However, she still thinks that he won’t be able to hold down a job, and that she will have to look after him when he’s an adult.
    He is an angelic Peter Pan and you can’t but love him, and I do, to wee bits!
    It’s all about baby steps. Your boy will get there, baby step by baby step, with your love, help and understanding. And you will get there with the love and support of your family and friends.

  22. July 27, 2011 / 9:20 pm

    who knows what the future will bring but you will take each day as it comes, moving forward, looking after yourself and your boys, with the love and support of your family and friends. your family and friends will be your constant, they will be there for you, whatever the future may bring.

  23. July 28, 2011 / 9:21 pm

    It’s all about the here and now, yep there is a bigger picture but that can overwhelm us if we try to work it out. As you know Marylin I’m Aspie so is my son, my brother and my sister. My Daughter and my Dad are both diagnosed with Autism, my Dad’s diagnoses also says he has a low IQ. There are things I still have to do for my 10 year old *CAL, that most parents of NT kids stopped doing for their kids at the age of 3. I know to look to her strengths and encourage her to be herself. I know too well what comparison to others can do to self worth as someone with an ASD.
    My Dad can’t tell you the date or even the day of the week some days, he works to a time table, he always has. He can’t cope with any change to his life, he is non-verbal outside of the home environment. However he has held a job since he was 15, bought his own home, learnt to drive, got married, raised 3 children always provided for us. He always struggled to understand us but Mom didn’t. The biggest change of all for him was losing my Mom, he is learning how to cope, it’s hard for him but he is making progress.
    My Mom didn’t have a clue what she was doing with us, neither did my Nan with my Dad and his identical twin. I had all the same fears that you wrote about my *AJ when he was Max’s age, I was on my own too and homeless for a while.
    Your unconditional love and acceptance of your children is what always helps them to keep taking that next step.
    You’re doing great my friend.
    Love and hugs.
    Lisa. xx πŸ™‚

  24. Dizzy
    July 29, 2011 / 12:04 am

    I am doing great, 5 weeks to go and still no pains or uncomftable stuff yet, except the little-one is still sitting with his bum down and head up πŸ˜›
    I am basically enjoying the little moments now and wait and see what the upcoming few weeks will bring me πŸ™‚
    /huggles and kisses

  25. Dizzy
    July 29, 2011 / 9:50 am

    Hunny, there is one thing certain in life and that is that we don’t know what the future brings us. It’s very scary, but on the other hand it keeps the surprise act alive πŸ™‚
    Enjoy the daily little things right at this time and you know…it sure is ok to sometimes just think…what if….but never lose your moment right here right now when you do that πŸ™‚
    /hugz

  26. July 29, 2011 / 11:01 am

    Sounds like he’s doing really well!
    Thank you so much for sharing. πŸ™‚ xx

  27. July 29, 2011 / 11:01 am

    Indeed. That is the most comforting thought, ever! πŸ™‚ x

  28. July 29, 2011 / 11:02 am

    Thank you SO much for this insight to your life, sweetheart. *hugs* and lots of love. xxx

  29. July 29, 2011 / 11:19 am

    So, so true! Thanks so much sweety. How are you doing? *hugs* and love xx

  30. July 29, 2011 / 10:58 pm

    When your monkey mind starts taking over, just lead it back to What Is True Today. For today, you have the strength and grace to walk the road you’re on. I cannot imagine walking your walk, but I know that we’re not asked to shoulder more of a burden than He knows we can bear. (((((HUGS)))))

  31. July 30, 2011 / 12:19 am

    Awww I can’t wait to see photos of the little one! πŸ™‚ First baby is the most wonderful thing *ever*!
    Remember to trust in your body… it knows what it’s doing when it comes to labour. πŸ™‚ *hugs* and love xx

  32. July 30, 2011 / 12:20 am

    Thank you Trece! You are so right. I’m not religious, so much as spiritual, but I do believe that I’ve been given Max for a reason. I’ve grown so much more as a person than I possibly could have without him. I know I’m the right mama for my beautiful little boy. πŸ™‚ *hugs* and love xx

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