Crying Inside

It's a skill you acquire as a special needs parent.   Keeping the smile on your face and the hurt hidden inside when you read about the lives of others.

"We spent a glorious day on the beach."

"He made the team."

"She has a game published in the game store and she's only 13."

"Thank you to everyone for making our day so special."

"I'm going to be a Granny."

"Just booked two weeks in Disney World."

"She got 9 straight 'A's."

We're absolutely delighted for our friends, really truly we are, but sometimes a little piece of us dies inside.

You can't tell by looking.  Often it's the funniest, smiliest, warmest people who are hurting the most.

Sometimes special needs parents need to stay in, need to stay off social media, need to feel sorry for themselves or comfort each other.

The knowledge that much of this is caused by poor state services and supports, makes it all the harder to bear.  And so we refocus our sadness.  We fight, and we fight, and we just keep hoping that it will be enough.  We fight for the rights of our children, we fight for their acceptance, and for the help that they need.  We fight and we hope, and then we fight some more.  Because what else can we do?

Many of us have memories of what family life was like before special needs took over, before it seeped into every crack and crevice of our lives.  We try not to remember, we hide away the photos.  We do try and embrace our new lives and focus on the positives.  But sometimes it's hard.  Sometimes we do end up crying inside.

This post is dedicated to a very good friend.






24 comments:

  1. Exactly this C xx no-one sees those tears but they are there

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  2. I can imagine. Lots of love. xxxxx

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  3. Yes. That's exactly it. I get it. xxx

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  4. Even tho Peter is 24 and I thought I was fine with things, there are still times I get a bit upset when people tell of the things that their "normal " kids do. Man, even some special needs parents make me feel guilty because Peter "looks" ok, till you get to know him.

    But then we have the good times, the triumphs that others take for granted and the world feels a bit better

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    1. Of course I see both sides of this, having one with very visible disabilities and one with invisible issues xx

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  5. I can't even imagine how hard it can be, I don't even know what to say...this is heartbreaking in its honesty and I hope someday you get the support you need and deserve xx

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    1. This was one of those posts that I didn't censor before hitting publish! I was trying to speak for more than just me xx

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  6. So get this. You know the 'family do' I mentioned on twitter, well though it went well (that is I got all of us there for some if it) I had to endure my brother and sister in law talking about how busy they were going on holidays, days out etc. Don't get me wrong, I'm glad they're having a good time but I found it a stark reminder how hard things are for us. However I smiled (as you do) and held on to the thought at how brilliantly my daughter managed the day.

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    1. Glad she coped, and hope you weren't too sad xx

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  7. I feel so much for you, and those you are writing this for, and I am so mad at constant cutbacks in the area of Special Needs. I know that I have it relatively easy but I do understand that need to withdraw and stay away from Social Media from time to time. xxxx

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  8. "We spent a glorious day on the beach."
    I wish!
    We've had one holiday since Damien was born and that was an absolute nightmare. Obviously now we know that his problems were because he's autistic. But OH wants to go on holiday. He doesn't get the concept that we can't have a 'break' from Damien's autism. It's not a case of 'same problems different location' - it's worse problems BECAUSE it's a different location. Gone are the days where I can take my pick with destinations and the only criteria is - do they accept children and dogs. Now it's a whole new ball game.Places like Butlins are out (too much stimulus) and even log cabins in the Welsh mountains are not the easy option anymore because the whole site is likely to hear his melt-downs. We're entitled to a holiday the same as anybody else but is it fair on them? I worry about that.
    Then there is the security. It needs to be like Fort Knox or he will wander off. There are specific places which cater for special needs but they are very expensive. It's a mare!
    Holidays are low down on the list of concerns with having an autistic child, I know, but it's just another way in which life is different. The word 'holiday' fills me with dread but I'm trying to balance OH's need for a 'break' with making it as good an experience as is possible for my son. I can't remember when I last felt relaxed. My life is all about him.
    Yesterday he had another melt-down on the school yard. I got stared at. I always get stared at. I am the woman with 'that child'. You have to develop a really thick skin but sometimes it gets too much and I cry with frustration and sadness that people don't see him as I do - a beautiful and special child.
    This comment has turned into a semi-rant. Apologies..
    Good post - I understand and can empathise with every word. x

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    1. "Worse problems BECAUSE it's a different location" -- I'd say every autism parent can identify with this. Thanks so much for reading and commenting, rants always appreciated :) x

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  9. Yes! It's so true! I know exactly what you're talking about! Lately , though I haven't been able to hide it so much! I'd be honored if you would consider linking up this post over at Friendship Friday at http://www.faithfulmomof9.com/friendship-friday-9/ hope to see you there!

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    1. Sometimes it can be hard to hide alright xx

      And thank you for the invitation, I have joined in now

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