Don't Give Up On Me

Lately I feel like part of being a special needs parent means letting down everyone in my life.  I'm sure to a lot of friends, family and teachers it looks like I just don't care.  There are days when tasks don't get done well or at all.  There are mornings when socks don't match and his hair is not combed because after battling getting dressed, eating something decent and transition meltdowns, the hair was just too much.  I'm sure even to my own children it may seem like on some days I am too worn down to have much left to give.  And some days I guess I am.  But even in my exhaustion and occasional disheartenment, I hope they can see I'm always trying and I hope they don't give up on me.

To the school that sees us come in late nearly half the time and wonders why I don't volunteer or why the constant forms are never signed on time: Don't give up on me.  Please know we are always trying out new methods and new routines to make mornings easier on him.  Please know if life is ever not filled with outpatient appointments and medical forms, I would love to volunteer for my oldest son's parties.  Please know when it comes to forms sent home in the backpack, they're an afterthought, because they have to be.  And when I find them the next morning they go into a stack of papers that I swear I'm working through as quickly as I can.  

To the friends that leave voicemails that go unanswered: Don't give up on me.  Please know it is not that I don't want to talk to you.  It's not that I don't care what's going on in your life.  Knowing that you called or texted, I know that you care and in the spare moments I have when I have enough in me to give you a real conversation I will call you back.  I don't know when that will be, but please don't give up on me.

To my husband when I am often cross and the house is far from perfect: Don't give up on me.  Please know you are often seeing the climax of a trying day in which I tried to hold it all together and by the time you get home is when I usually start to fall apart.  Know that I want to have a better attitude and a better part of me to offer up at the end of the day, but right now I don't.  Please know that I would love more than anything for the house to be picked up, the laundry caught up and dinner to be made (or even prepped), but I know it's a rarity.  I hope one day things will even out a bit, and that it will be less of a rarity.  I'm not giving up on that.

To the family that wishes we could visit more:  Don't give up on me.  There is always the hope that one day traveling will not be such an ordeal.  Maybe one day our son will be able to go on a plane.  Maybe some day we won't worry about regression anytime we stay away from home.  Please don't ever think we do not want to see you, but for now, we do the best we can to do what's best for our family.  I'm not giving up on the hope that someday it will be easier.

To my neurotypical kids who want nothing more than my attention, love, and time: Don't give up on me.  There will always be moments when I say "Not right now,"  but that doesn't mean I don't care.  Please keep showing me your Minecraft worlds and the artwork you brought home from school.  Please know that even when mommy is tapped out for the day, it doesn't mean I do no love you.  It means I need to regroup and reenergize so I that I can be the best mom I can be tomorrow.  On the days your brother takes up the majority of my time and effort, know that you are just as loved and cherished, and that I do my best to take care of each of you based on your different needs.

To my son on the spectrum: Don't give up on me.  There will be days when it may look like I have thrown in the towel.  There will be days when the most recent therapy or medication seems to be helping you so little that my hopelessness will be palpable.  There will be days when I light up at progress, but there will also be days when my inner-cheerleader is not quite as loud.  There will be days when I am overcome with joy and optimistic hope, but there will also be days when the grind of accessing that hope gets to me.  There will be days I am giving you my all because you absolutely need it, but there will also be days when I have nothing left to give.  Please know that through it all, I will never give up on you.  And on the days when I'm barely holding it all together, don't give up on me.



Comments

  1. thank you, this made me cry because this mirrors my feelings so much.

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  2. This is amazing - so well said. You are not alone.

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  3. I guess you've forgotten that relationships are reciprocal -- that you don't get to take-take-take, half ass everything and ignore pretty much everything and everyone that isn't your peach of a kid on the spectrum.

    Newsflash:

    Most folks with autistic kids aren't late for school half the time.

    Returning calls and reciprocating dinner invites? Are integral parts of being there for family and friends.

    If your son was diagnosed 6+ months ago? You're no longer in crisis. This is just your life. You don't get to keep taking and expect everybody else to keep giving.

    Really.

    If you need help, ask for and get help. Because if you keep going the way you're currently going, you will alienate everybody in your life - your hubby, your other kids (who have a legitimate complain that you have no time for them because you're obsessed with your autistic son), the rest of your family and your friends.

    You will then complain that nobody but your internet autism mommy friends get you, that you're all alone and it'll be your own damn fault.

    ****

    Fwiw, i have been raising my autistic nephew for 5+ years, more than half his life. My sister (his mom) complained like you and alienated everybody like you and said it was too hard. So I took in Nephew.

    And Nephew is a total sweetheart -- not that hard to raise at all. He's my youngest's bff. Discretion is the better part of valor and I simply refuse to let everything be a power struggle. I hired a professional toilet trainer (they exist!) and the poopy Picasso phase ended 6 mos later. Raising a kid on the spectrum is nowhere near as exhausting as mommies like you make it out to be.

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    1. For that child. At this point in his life. Fingers crossed it stays that way for you, but it is unlikely to. And by the way, you didn't have 2-4 years of pure exhaustion and despair weighing you down already before you got him.

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    2. OMG seriously can't believe this Missy Manny commenter! Has she never heard of the fact that every child with autism is different? And in fact every adult is different and they're not all like her sister?! Sorry that she feels like she's been dealt a bad hand (why else would she feel the need to come on here and complain?) but really, there is no need to kick someone down because they admit that life can be a struggle at times.

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    4. What a kind, supportive, helpful, positive thing to say Missy Manny. I hope if you are ever feeling out of sorts someone offers you the same kind of wisdom. Only maybe you're just TOO GOOD to ever feel like that!

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  4. I found that this post was extremely powerful and very relevant to what we are experiencing in our lives currently. It's bloody hard and I cannot understand how anyone could respond negatively to such a heart felt piece of writing. When the above poster writes "if you need help, ask for help and get help" easier said than done! Our family support in our home was stopped due to government funding cuts this was vital support for us as a family and we are completely lost without it. I've written to people high up in the county council asking where I can now go for support. Every story is different, every situation is different .

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    1. My thoughts exactly. Hope you get the support you need back x

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  5. Wow! You need to get off that high judgemental horse of yours! When you have met one person on the spectrum, you've met one person on the spectrum. Really happy for you that your nephew is responsive to potty training. Try a walk in the authors' shoes and you may feel as exhausted as she does. She is just venting and that's ok. There but by eg Grace of God go I. Let's hope your nephew doesn't suffer depression /feel suicidal/be unable to leave the home, as many autistic children become when life is too much. Then you yourself may learn a bit of emapathy. This lady is not criticising her autistic child. She's trying her her best.

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  6. Thank you for writing this post. As a parent to a child with Aspergers and a neurotypical child I completely understand where you are coming from. There are only so many hours in a day and you cannot function unless you look after your own wellbeing. We have to work within these parameters. As a parent you quickly learn that there is always someone who thinks what you are doing is the wrong way of doing things. This is a brilliant article and I can identify with it a lot. Well done for writing this.

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  7. I am a single parent looking after a 7yo with autism and a 17yo with Aspergers. I have chronic arthritis and anxiety and very limited help. I have no social life. I hear everything you're saying. It's soul destroying when someone replies heartlessly when they really should know better than to judge and belittle.

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  8. @ Missy Manny
    If you don't have anything good to say don't say anything. She wasn't asking for your approval. And because your nephew is not so hard to look after doesn't mean you know it all.Dont you know every child is different? God she's trying here.Shame on you for your discouraging words.

    @ Mandy...
    You are such a beautiful person. Your family is lucky to have you.

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