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Sunday, December 30, 2018

The Show Must Go On.

"The Show Must Go On. 
The Show Must Go On. 
Inside my heart is breaking
My makeup may be flaking
But my smile, still stays on." 
Queen

Kiddo had his IEP the other day. I'll get right to the point. I didn't want to go. I didn't want to deal with it. I didn't want to prep for it. I didn't want to hear about goals or benchmarks. It's not that I don't care, it's just that I am so tired.

Couple with this with a yearly review from the state agency, "Perform Care". Which if you are a resident in New Jersey, you will speak to quite a lot under the guise of getting help and services for your kid but only if you are willing to be a giant pain the ass to follow through to get it.  "Perform Care. We barely care or perform." might as well be it's slogan.  I spend an hour on the phone with them to once again answer a slew of questions of what he can't do milestone wise and what damage he can do behavior wise.   I listen to an employee tell me all the stuff they can provide if only he was "more severe" or "less severe".  It seems if your child is middle of the road autistic like mine is, don't hold your breath that you'll get actually help.

Gee Kiddo, it seems you have the wrong kind of autism.  Who knew that would be a thing?

It's not just a physical tired that I am talking about here. I haven't had a full night of sleep since the doctor said "It's a boy!" at the Kiddo's birth. All parents walk around in a bit of fog, especially those of us in #TeamQuirky.  It's not fun but your body gets use to it.

What I am talking about and trying to come to terms with is how emotionally tired I am of all this.  I'll say it. Autism is tough task master and it often makes me it's bitch.  Kiddo is fourteen. He's been in school since the day after he turned three.  So we're talking a decade's worth of IEPs and special meetings with the team.  Plus the year and half before school with Early Intervention and all the service plan review business. At this rate we could wall paper our entire house ten times over with all the paperwork involved.

And I'm just done and the worst part is I know I can't be.  There is no end to this. Not till the day I die and even that I can't really do because, well, autism.  The show must go on. There is no understudy.

Also, to be perfectly honest, I am hitting a wall with Autism in general. Not just my Kiddo's special brand of it.  I know this is an issue of my own making.  Becoming a blogger that writes about one subject was eventually going to bite me in the arse.  I just had no idea how utterly steeped in autism I would become.  Seriously, I cannot escape the stuff.  The majority of my life even outside of my Kiddo is just autism related stuff.  Other families that I know, teachers and therapists that I have become friends with, sites that I follow, podcasts that I listen to, writers that I read, stuff on social media just has a crap ton of autism and puzzle pieces slapped all over it.

I have observed a common theme for most of what I see too.  Struggle. There is just so much hustling to make things work for our rapidly growing kids.  With this IEP in particular, the theme of rapidly growing was forefront.  Job training, independent life skills, improving social skills, and working on coping skills are all being thrown at us.  I mean, we're ready. I think. This is what my professional background is in.  I've been playing the part of "job coach" long before the Kiddo.  I know my lines.

But can I find it in me to sell the scene? Because I am struggling to get to that part of me that makes me believe that we can do this.  That he can do this.  That I can be both his duet partner or his background chorus girl.  Whatever he needs, I will try my best but I am so damn tired and so scared because the older he gets, the more I see how the world just seems to forget our kids grow up.

Because every day lately has felt like I am in a play that never ends. Even as I was getting dressed to go into the school because the dress code is not "pajama casual", it was really hard for me.  I caught myself thinking "Why can't we just be shitty parents and blow this off?" Of course, as soon as I thought it I realized how stupid it was.  Blowing this off won't make it go away. The audience have bought their tickets. The curtain is going up. "Places" will be called and you can bet your arse I will be in mine. (Back to the wall, middle of the table, face to the door to greet any sudden cameo appearances like special guest stars "Speech or Occupational Therapist")

But good gravy, this was the year I struggled to pull off this performance of "Involved and Active Parent".  It kind of freaks me out that I felt this way to but I am hoping that by acknowledging these feelings I can get over the hump of "meh" I have been feeling about autism as of late.

After all, there is still more story to tell.  On with the show!

"I'll top the bill
I'll overkill 
I have to find the will to carry on.
On with the show. 
The Show Must Go On." 

Thanks Kiddo. I've been feeling a bit Autism with a side of "meh" lately.  This helped. 




19 comments:

  1. Thank You Eileen for putting my feeling so succinctly into words.

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  2. Its like a prayer from my soul.
    A tatto that I see on my skin(love it or hate it)
    Dont know!
    Your words as inspirational as they are, they hurt as the same time love them because its all true.
    Beautiful and bitter.
    Thank you! We love you and are we all are in this together. For a Cure!!!

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  3. We have all been there...exhausted and done. SO done. I really have no words of encouragement that won't sound like false platitudes, but sometimes just knowing you are in the same place as others can be half of the Battle.

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  4. my heart breaks for you, hitting the wall is brutal :( Please don't take this the wrong way but you mentioned previously that you were taking medication (prozac if I remember correctly), please speak to your doctor about this, you could need your medication adjusted (I'm a pharmacy assistant). Thank you for your honesty, I'm sending strength from Toronto xo

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  5. Beautifuly written and so painfully true. Struggle is what a lot of us parents deal with on a daily basis. Our son has taught us so much though..We've acquired more patience but also are very persistent when it comes to what is needed for him. He has given us more determination,faith and resilience as well.We look at things a lot differently and appreciate the little things in life more than ever before. A little goal that some would see as little is a big achievement we celebrate with our son. Our other kids have learned a lot from their brother as well. Patience,respect,kindness,humor,honesty,not to judge people ie.. that kids a brat. when really that kid is having a meltdown he cannot control.And so much more. They are wise beyond their years. As a family and as a parent yes we struggle and our little man struggles daily too. But, we continue to fight and we continue to educate those that don't understand our amazing kids. We meaning all of parents with autism struggle but this struggle has made each of us a better human being with our eyes open wider our voice louder, our motivation more driven, our perseverance and determination in constant overdrive, our faith stronger than ever and our love unconditional.All of this because of our one awesome child. Blessings to you and all our families out their. Know that we are in this together. Thank you for sharing your words.

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  6. You are not alone, and you are so loved. Always do what you need to do, you don't need to explain because people who understand are the ones who get it when words fail ♡♡♡ sending all my love and strength to you and yours, from me and mine who have been following and living parallel lives from the beginning ♡♡♡ https://nottheformerthings.com/depression-mothering-child-special-needs/

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  7. Thank you. Yes we are tired. Now 16, my son apparently is ready to start talking about “being an adult” at the next IEP meeting. This is a child who cannot brush his own teeth, make a meal, or operate a phone to call for help. The time I put into taking him to weekly therapies and
    coordinating his caregivers is exhausting. Oh and I also work as a teacher. Thank you so much for sharing. I will remember your words. There is no understudy for me❤️ .

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    1. They can be so stupid sounding as professionals.

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  8. I feel you, sister! My son’s annual IEP time, like yours, is followed by winter “break” too, which is just not cool. I’m in a big-time slump right now too. Your brain is Mamma FRIED!

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  9. My 6 year old grandson is autistic. I watch him after school. I try to stay in the moment, and not think too far ahead, but that is not a natural tendency of mine. ��. My grandson is still not potty trained, although progress is being made. I know he is smart, and it makes me sad that autism prevents him from studying about the planets and reading books right now like typical first graders. It’s my son and his wife who are on the front lines, and they are just amazing. But I know they are tired. I also know that as a grandparent, I will never truly understand what they go through on a daily basis, as they balance the needs of their autistic son with their older, typical son 24/7. All I know is that I appreciate blogs like yours for the humor, yes, for the success stories, yes—but also for the honesty about the tough times. It is important for those of us who have the luxury of stepping away from autism’s constant presence to realize what the parents go through, both physically and emotionally.

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  10. As the mother of a 14-year-old daughter on the spectrum who is also on the spectrum, I have met this wall more than once. I have had to learn to be open and honest with what I experience with all of my caregivers (doctor, therapist, psychiatrist, spouse, parents, grandparents, etc.), because no one truly knows what each of us experience as each of our journeys are unique. It's by being open and honest that we get the help we need. There have been times where I have wanted to throw my hands in the air, stuff my head under a pillow, and just quit. But I know that my daughter relies on me to make sure her needs get met. While I have been teaching her to advocate for herself, this (like so many other things) is pretty much out of her reach at this time. I have hope today that this may come in time. I know that I have had to teach others to advocate for her as well (my husband, her grandparents, certain select family friends, and even certain support people) because my mental health issues sometimes can prevent me from doing what is required of me as her parent. I have had to learn that self-care is vitally important and can come in very simple forms. I had to figure out how to integrate this into our world while managing the spectrum. Because the spectrum diagnoses are not the only diagnoses either of us have. There are so many more issues, some of which are connected to this diagnosis, and some that are not. Yet everyone tells me self-care MUST occur. This challenge is something that I still struggle with occasionally, especially if I forget or when I get overwhelmed. Please know that I identify with where you are at in your journey, and I empathize. Know that you are definitely not alone, and that I send my thoughts, a cyber hug, and the warmest wishes that you will find your own way to manage these walls in a way that works best for you.

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  11. I know those feelings so well. I wish I could make them disappear for you. My heart is reaching out for yours with a huge hug and some hope that there is less of this "autism management" in your future. My son on the spactrum is 23 now. We certainly aren't at the end of the journey, but we aren't struggling up a steep cliff anymore. Life will change when he finds his life's work, whatever that may be. Maturity comes late; but as it comes you will see changes, and most likely he will take on the responsibilities you have managed for so many years. You're almost there, Mama! You got this! (((hugs)))

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  12. So so true....thanks for your honesty.....it helps just to know I am not alone in my struggles with my 15 yr old.....actually the struggles are more with all the young "professionals" (most of whom are childless) that I have to constantly deal with and get almost no help from.....

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    1. I've just started with this bunch of so-called professionals...very disappointing

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  14. mine is 25. the way these systems state and local pretend to care, continues..."when the school bus stops" please be of a ready mind...4 years my young man has been w/o services. 4 years of juggling his hardships and changes that i may not have understood at that present...4 years of getting to know my son, which was a little put off by my dependency on the school system, on a more personal adult level (that is a major PLUS)...4 years of a different type of tears, the sick to my stomach ones that told every one "what the hell is wrong with this place?"...4 years of suffering for the 3 younger ones (home schooled) who did not know how to handle outbursts and episodes and mommy trying to calm down this big guy who could( if he wanted to) hurt her.
    Not to ramble... but I know 'your' tired. I love the statement of sudden cameo appearances like special guest stars "Speech or Occupational Therapist"... and after the show... you're left with a false sense of hope because of great performances by cast members. but this is your life. And I know in mine and with mine the happy is real and so is the anger. I don't have the cast anymore and its most liberating. now, like Ann, I get to stare down incompetent young professionals who haven't a clue... not only about the situation but also about their own jobs..

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  15. You are fabulous. Never forget that.

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  16. There are so many things that go into taking care of a child with autism and it can be exhausting and never ending. I'm so glad you posted here about your experiences. I have a child with autism as well and sometimes at the IEP meetings it can be the same thing over and over again and well exhausting. There are so many great things as well and I guess that's why it's all apart of the journey. I have recently started my own blog https://developingintentionally.com/ talking about my experiences with my daughter and I'm glad to read others experiences to give me encouragement and help me keep going.

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