sometimes …


Brooke had a hard morning. The kind of hard morning that left me tempted to write a four word post reading SOMETIMES AUTISM JUST SUCKS and leave it at that. That kind of hard. The kind if hard where there are simply no reserves. Where nerves are frayed even before their limits are tested. The kind of hard where the simplest questions feel like impossible demands. Where each step of the morning routine is more taxing and less tolerable than the last.

The kind where school feels like the promised land. Where I have high hopes that the routine, predictability and familiarity of her school day can bring my girl back to center.

The locker routine is harder than usual. Library books always throw a monkey wrench into the process, but this morning they’re insurmountable. She cries out in frustration when she drops a book, picks it up and drops it again. I hear a kid down the hall say, ‘Brooke’s crying.’

I help more than I ‘should’. I shut the locker for her and help her open the door to the classroom.

She drops her entire load of books on the floor – her communication binder, her homework folder, her library books – all scatter in a chaotic heap. She seems not to notice as she stretches a finger toward the woman greeting the children just inside the door. ‘Good morning, Ms L,’ she says without looking at her.

The woman – who is decidedly NOT Ms L – checks for something on her clipboard.

I search the room. There’s not a single familiar adult face there. Not one. How is that possible? There are three adults assigned to Brooke’s room – a teacher and two individual aides. How are they ALL not there at the same time?

There’s a second young woman sitting at a far table. The woman with the clipboard tells me both of their names, neither of which I remember twelve seconds later. She explains that both Ms N (Brooke’s aide) and Atlas (her aide from last year who works with another child in the room) are both absent, as is Ms L.

I momentarily consider turning around – taking my girl the hell out of Dodge and coming up with a plan B. I don’t.

Instead of running for the hills, I call her back to pick up her books. She puts the folder in its bin, the binder in its box and the library books into their crate. Then she wanders out into the mix.

I watch her following her morning path throughout the room. She stops to confer with a group of kids at the calendar. ‘Amorial day,’ she says to a boy next to her. She must have asked him which holidays are coming up. It’s a comforting script, naming the holidays in order throughout the year. ‘And what comes after that?’ she likes to ask, again and again until she’s sure we’ve covered them all.

I explain to the substitute that she’s had an anxious morning. That she’s had trouble with transitions. She very sweetly asks if there’s anything she can do. In two minutes or less, I offer suggestions. I ask her to make sure that Brooke always knows what’s coming next. That she keep her apprised of the next three or four things to expect. I ask her not to be too wordy with her, to keep her instructions as clear and concise as possible.

I repeat what I’ve said to the substitute aide. She assures me that she’s already spoken with Ms N. I wonder why she has yet to say a word to Brooke.

I kiss my girl and walk out of the room. I wonder if I should have talked to someone – firmly told the administration that she needs to be a priority. But I’m pretty sure they know that. I hope they know that. Yes, I’m sure they do. I trust that they’re doing what they can to effectively shuffle the day’s ridiculously limited resources. Right?

I worry about my girl. I carry her angst with me as I leave. I wish by sharing it I could take it away, but I know I can’t. I want to wrench the ‘real world’ and all its unsettling unpredictability into submission. I want to make it better.

I sit in the car outside the school and I write. I’m torturing myself, wondering if she’s OK in there. I look at my watch, shocked to realize that nearly an hour has passed since drop-off.

I guess I could have stuck with the original plan and saved a lot of time.


52 thoughts on “sometimes …

  1. I have walked in your shoes. Too many mornings to count! I still walk in your shoes and my son is in 7th Grade now. Sometimes Autism Sucks! That about says it all! I can tell you it does get easier. Hard to believe I know! But it does. My son has Asperger’s and is turning 13 in the Spring. We still have our days and nights too. Example, I recently cleaned out and rearranged (with his permission) the room he shares with his brother. That was about 10 days ago, Jared is still trying to adjust. He needs to feel closed in, nested. He created a little “nest” with the sleeping bag he still sleeps in, on the top bunk. But, the good news is he did it himself! He recognized that he was having some trouble with the transition.

    It does get easier!

  2. Love & Hugs! I have actually bailed in the past and said “too much” we’re having a Mommy-day. Then I take her to work with me and make up ‘homework’ for her to do. That’s only when she can’t physically move herself into the room because of the sub/fear. It’s not often, but occasionally necessary.

  3. Sending positive thoughts your way.

    And not that it’s fair for this to happen on your and Brooke’s backs, but for those three professionals to have the experience of sharing her day with her without her having the reassurance her usual relied upon routines, that experience is one that will pay off when they have to serve another child someday for whom the safety net has disappeared unexpectedly.

    But yes sometimes it does just suck.

  4. I too want to sometimes write Sometimes autism just sucks and leave it at that. I love my son. I despise autism.

  5. This morning my 4 year old son sat in the chair and told me about how he has no friends, no one at school will play with him and no one likes him.
    He’s in a class with 7 other autistic children ranging from 5 years old to 8 years old.
    He doesn’t understand yet that he’s “different” or that they are too. He just knows that they do their own things and won’t play with him.
    He’s 4 and he’s depressed already… and I had to put him on the bus telling him he’ll be ok, and that a lot of people love him… even though I know it’s only going to get harder.

    I know all too well just how much autism can suck.

  6. There are days, when just for a moment (maybe two or three), that I yearn for her to be back in public school. Not for the normal, loving mom-thoughts for her education, well being, and adjustment. Nope. *Those days* bring about a purely selfish longing for just an hour without a struggle, without a two hour debate on which pencil to use or 3 hours of tears and pleading not to do *work*. To skip reading and science and bed making and teeth brushing. In fact, today, I’d be happy with a peaceful 5 minutes alone in the bathroom. 🙂 At least I know I’m not alone.

  7. I understand the agony of “not knowing” what actually occurs after you leave the classroom. I feel that way constantly with my son. He has had several rough mornings, and I find myself geting frustrated and helpless all at the same time. Believe me I wish I could just figure him out and why he has rough mornings sometimes and not others. I find myself going through my mental list of possibilities as to “why” he’s so upset. I’m like you… I pray that by him going to school that it sort of “snaps” him out of his funk. I worry that his teachers won’t understand or that his aide won’t be there that day… what would happen? Will he be okay? My mind goes through all the “what if’s” and then I remind myself that each day for him is a journey, an adventure. He may do well and he may not, but at the end of the day his smile reassures me that he will be and is okay. So don’t fret, your precious gift will do fine. Our autistic children are tougher and more courageous than we , as their parents, could ever fathom.

  8. Autism does suck. But what doesn’t suck is the community of kind and generous people who share your experience and support you. We have met so many wonderful people in this journey – none of us wanted to be here, but we recognize the need to be there for one another. Take care, and know that you are not alone.

  9. Sending you hugs! You did the right thing, let’s try it and see how she does..if you never try, you will never know.. she knows the children, she knows the environment, and hopefully she can generalize her feelings for teachers to these teachers! Nothing ventured nothing gained, we have to push, we have to try.. even though we feel our need to “fix everything”.. we can’t, but hopefully she will find her way today.. let us know how it turns out 🙂

  10. You said it all!

    I remember when my son was young, sitting in the car outside his school crying; Feeling sad that he was having such a hard day, but also guilty about being glad that I had a moment to myself to catch my breath. It is easier now. He can regulate his emotions a bit now, and can handle his routine being messed up, just a bit. Praying for you!

  11. I’ve been where you’re at. I’m not his mom, but I’m his nanny. I’ve been with the family for almost 12 years now. He was 9 1/2{and his sister just turned 3} when I started. All you can do is keep going. Try to hold it together and move on. Some days are better than others. Remember that. KEEP remembering that. He’s at a school for special needs adults now and is doing pretty well.

  12. Must be something in the air – My 10 yo PDD-NOS daughter went through the same things this morning, from anger and frustration to tears of pain at being left at school, after a morning of not wanting to get dressed, and running for every escape routine possible. But its lunch time, and no call from school to come pick her up, like last Friday. (Twice!) Even the challenges can turn out ok in the end, and the struggles are worth it when we continue in love.

  13. There were a few times in April when everything was all “Awareness Awareness” and I just like just saying, “Autism can suck it.” That’s why there were no autism awareness posts from me. Just didn’t have it in me.

  14. Well, it’s hours later now…I’m hoping it got better. For BOTH of you. And, you know, if you’d simply posted what you originally thought of posting? We would’ve gotten it. We’ve all had those moments. Heck, those days/weeks/months! xoxo

  15. I so know what you are saying here. I have mornings where I just say “Sometimes Autism Just Sucks!” I see that a lot of people know how you feel as well. So you are not alone, but I know that them days we sure can feel alone very much. I hope that everything is going better for you and your daughter.. It is hard to raise a child with autism, but we are doing it and we will all make it. :o)

  16. I know, those days just suck. I hope your next one is better. Thanks for referring the “rooster” blog to your readers, it’s great too. Hang in there!

    Kim McCafferty

  17. I’m a new reader, but I offer you my hugs. As a mom of a 13 year old son with Asperger’s and a 7 year old daughter that is mildy autistic, I agree that “SOMETIMES AUTISM JUST SUCKS.” And I offer sympathy to your daughter. We’ve been there.

  18. Good for you letting her stick it out. I can relate. My kindergartner had 3 subs in one week when his teacher’s child had a biking accident a few weeks ago. The break in routine is tough, but they do power through. God Bless!

  19. Yes – Some days it does just suck — maybe it is the weather the time of year or it just was a full moon – but i agree AUTISM JUST SUCKS TODAY

  20. I’ve found that on those days, it either is as bad as I feared, but most of the time, they end up just fine. That their natural resilience comes out after they have used up everything they’ve got. I’ve found that most of the angst and worry comes from me and they move on to the next thing. Drives me crazy, but makes me happy too…

  21. I can say that I have also had the very same kind of morning. I have a son 11. I won’t go into a long story, but I agree with you today as much as ever. AUTISM SUCKS!!!!!
    But we are not alone. Love and Hugs 🙂

  22. I know how you feel! Have been feeling this same way about school for the last 2 weeks!
    Big hug to you!!

  23. I have those mornings everyday. My son seems to go at his on doesn’t matter if we have to get there in 10 mins or 2 hours. We fuss every morning…I fuss and he laughs so then I have to laugh to keep from crying. Gotta love them!

  24. completely inspired by you, knowing that at times we are going through the same things. You’ve put my thoughts into words. Thank you:)

  25. I have a five year old son who has had days like this. I have had days like this. Every morning (or it seems like every morning)
    its a struggle..somedays are better than others..I know exactly how you feel and you wrote in this diary exactly how I feel!
    Thanks for sharing your story ..some days Autism does suck!

  26. You are so strong Jess, I would have faltered and taken D right home….but we can’t do that, in the long run it isn’t whats best for our babies. You continue to be such a inspiration and I’m send a huge hug all the way to the east coast

  27. I can’t speak from a mom’s point of view on this one as I am the one with AS. I CAN say that I wish my mom had been as caring, loving and insightful as you. Even on your worst day you are an outstanding mom and that is going to make all the differnce for Brooke. I CAN speak from a mom’s point of view as in I KNOW how sick and tired you can get. I hate my kid’s CF with a passion sometimes. Feel like kicking trashcans and tearing doors off cars. It DOES suck. But we just keep on going and loving and doing the best we can. We’re moms.

  28. Beautiful post. It broke my heart,
    You captured EXACTLY how I feel whenever my son’s teacher is away.
    You’re amazing for leaving your daughter there. I would have caved!

  29. i posted a picture from pick-up on diary’s facebook page. she was no worse for the wear, the trauma of the morning all but forgotten. she needed some extra downtime – we stayed at school and wandered the grounds (and climbed a tree!) but my girl shows me time and time (and time!) again that she is nothing if not resilient. thanks to all who commented here today. this life is nothing if not a roller coaster! *sigh*

  30. You are so right sometimes Autism does suck. Today was def. one of those days… i dropped the ball or should I say my car did. On the way to school the car began to overheat as did the children in the car as I had to pull over and wait. Of course this made my 10 year old son with Autism made as he would be late and I had morning duty throwing everything out of wack. As he cried and got upset everyone including mom did too, yes sometimes Autism sucks.

  31. bigs hugs for you. I’ve ‘been there, done that’ and it’s absolutely exhausting. some days that ‘roller coaster’ is just so out of control I wonder if I’ll make it through the day. ….

    you are a fabulous mom and your writing more often than not expresses what I can’t seem to put into words. I’ve passed on your blog to several people who just don’t seem to ‘get’ what life with a precious little one with autism is like.

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  33. I am an Special Education aide at an elementary school. I just want you to know that we love your children, too. Yes, sometimes we have to re-arrange schedules to fill unexpected gaps, and sometimes it may seem to you that your child is not a priority, but believe me, they are. None of us are in this job for the money. Your kids are loved and given the best of what we have, everyday.

    • Oh Angie – I ADORE Brooke’s aides and teachers and support staff. I’ve written a lot about how incredibly grateful we are for their dedication and their love for our child. Please, please don’t read this as an indictment of the aides or the staff. It was in no way meant to be read as such. They are fabulous.

  34. I feel you…I have had more than my share of personal adversity and trauma recently. Yet, I can still say that absolutely nothing in my universe sucks more right now than autism! It has been one of those days in our household too. Guess I’ll just polish up the armor for tomorrow.

  35. i am so tardy to this party – i read this before running out the door early in the a.m. – but i’ve been thinking about this all day.

    you are so awesome for trusting in the teachers, in brooke, in the whole process.

    it could have been so easy to take her home, plop her in front of the computer, turn on a movie –

    but hell or high water, you both stuck it out.

    and she did it.

    proud of you.

  36. Oh, you are so right on the money.
    I had the same day as you last week. I’m still recovering.
    Hang in there. Sometimes it doesn’t suck, and those days are headed your way.

  37. I know exactly where you are coming from. My son had autism. I also tried to fix everything for him. And as hard as it is, that is not how to make things better. My son would get upset at the least little thing, I always jumped in to save him. As he got older I realized that , that is not the way to help them. Let them spread their wings. The best thing you can do is be patient, when your child is upset sit down, wrap your arms around them, tell them it is OK , everyone has a bad day. That is all that is required. I could always calm him, it worked every time. I would make him sit down, I would wrap my arms around him and snuggle him. I didn’t talk about what was bothering him until he was completely calm. Then when his mind was not so jumbled, he could tell me exactly how he felt. As my son got older, I realized that jumping in to save him from everything was not the right thing to do. It makes them feel like they can’t do anything. Let your child see that they can do anything they want it just may have to be done a little differently. My son made it clear to me that I was smothering him. He would say mom, I’m ok. Don’t worry. And he was right. I can honestly say that my son Daniel was the best thing that ever happened to me. He taught me more in his 18 years than I have learned in a lifetime. He taught me what is important. Patience , differences, understanding, unconditional love, the important things. You have to see your child as a blessing not a burden. What a gift you have. You have been handed an Angel.

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