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Tuesday, February 5, 2013

My autism house

Do not judge where I come from for I am a proud member of this autism house.  Unless you live in one, you simply do not know.

If it means hiding my dish soap that he's recently become fixated on dumping into my sink, so be it.

It means a bed he loves to mess up the covers and yet never sleeps in. Couldn't ya leave it alone kid?  Save me that chore?  Well, that's how it will be.

My autism house is loud.  So very loud.  To the point several therapists and myself are now worried that voice we worked so hard on finding is in danger of permanent vocal cord damage.  Constant prompting for a talking voice.  Heck a singing voice is even better than the blood curdling brain melting screams.  I will sing along with him in a show tune style if it means protecting his voice.

Then there is the irony of being loud versus avoiding places that are to loud.  Sorry,we will be avoiding these places.  I know you mean well when you say you understand but you don't. Not when you have to deal with the two hour meltdown aftermath. Thanks for including us but respect my desire to stay home. Sometimes I just don't have it in me to deal with certain places and situations.  At the end of the day, he comes home with me to this autism house.  So when I want to leave a place early, it's because I know what could happen if I stay.  If you don't live in this autism house, even if you live in one of your own, respect the reason why we got to go.

This is the house where I try to keep a schedule for security in a routine but know no two days will be alike.   Any tweaks to the schedule will require some military operation like planning.  Sometimes it will go well.  Sometimes we will just go all in and ride out the rage.  That's what we have to do in this autism house.  

In this house I will go through a range of emotions toward autism on any given day.  I will marvel at it.  Rage.  Contemplate.  Delight and sometimes even want to avoid it altogether.  Those are the hardest days.  When I no longer have the energy to either attack or accept it.  I have to remind myself this is the house I live in and go forward. I will dust off my jeans, slap on some lip gloss and go about my business like I have before. 

We will celebrate each milestone in a grand style in this autism house.   For my kiddo has certainly earned every parade of praise we give him.  I will smile and hide the tears at the same time.  Savor each victory even if it's just that I got him to finally eat meat balls and meat loaf in the same week. 

I will know when to step back.  It may look to others like I am hiding in this autism house.   I'm not.  I'm recharging and reflecting.  It's the only thing for sure I can do to keep going.  Even when the well meaning cliche cheer of "I don't know how you do it" is uttered.  Well guess what Buttercup, I don't how I do either.  Care to trade? It's easy to get angry but it's more fun in this house to go with the flow and order another side of fries.  So I'll tell that kiddo to hop in my car so we can hit the drive thru.   We'll try again tomorrow if we're having a rough time today.  It's all I can do.  Then we'll drive back to our autism house. 






14 comments:

  1. I feel you! That is how I feel everyday. I have three kiddos with Autism and a husband who was never diagnosed, but certainly on the spectrum. It can be so hard to smile and be positive some days. Good luck to you! I love reading your posts!

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  2. I feel you! That is how I feel everyday. I have three kiddos with Autism and a husband who was never diagnosed, but certainly on the spectrum. It can be so hard to smile and be positive some days. Good luck to you! I love reading your posts!

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  3. Oh, Yes Sister! But I would like to add don't judge my house cleaning either as sometimes the routine, training, or daily stuff just requires too much to get to the details of life like that.

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  4. From my Autism House to yours <3

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  5. Love this! Our Autism x 2 house is a fortress of deadbolts, child locks and gates, destroyed carpet and furniture. Its a chaotic but clean and delicate balance to keep my boys happy and meltdown free. I laugh when people ask why I don't "entertain" or have overnight "guests"...ah no, lets just meet up at a restaurant eh? I don't want you to see my house...you wouldn't understand. ;)

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  6. Bless you! You put into words what I felt for years. In addition to the severely impaired son (now 39 years old) and NT daughter who is 10 years younger, there was the undiagnosed Aspie (ex-)husband who also suffered from chronic depression for which he declined treatment. As my daughter like to say as a teen, "what doesn't kill you makes you stronger." I think we can all lift cars with single finger because parenting an autistic child makes us all Wonder Woman or Superman!

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  7. I am so glad I discovered your blog! You put into words what I feel and experience everyday. It helps to know I'm not alone. Thank you!!

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  8. Completely understand! Well from parents perspective and the child’s. ;D I use all the means I can! That means you might find pictures on the walls reminding the kids to brush teeth and clean hands. You will see a Reward Board with Stars underneath each Child’s Picture. Then we have the Service Pups who help us with transitions and interrupt behaviors. We may have to put sharp things on high shelves or locked cabinets and hide a few things because of fixation. Toys are constantly being traded out so not fixated on one toy. You change the knob of your child’s door because he always likes to lock himself in the room.

    My husband and I work as team with the kids. It is a lot of work but we make sure we get a chance to take a break. I could be in the spectrum, I never doubted it. But, in order for me to handle the “amusement park” I have to rock! I go to a quiet room and rock 30 mins to an hour. If I miss this “rock time” well I will be joining the kids with the screaming and running and so forth. ;D Music helps too! Even though I understand from the parents view , it is hard on the kid too! My husband & I have had the kids and the dogs pile on our bed, each kid with an iPod & headphones listening to their favorite Album. Just relaxing and enjoying each other’s company without saying a word. This brings the “amusement park” to a “resort”. ;D

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  9. I hear you, sista! I actually do! It amazes me to think other parents live in their own Autism House, too. When I'm here, I feel like we are the only ones. Thank you for sharing the truth. I will try to remember the other Autism houses when that blood curling scream is scaring the heck out of the neighborhood.
    And since I'm actually commenting (something I don't often do) is anyone out there dealing with a male child exploding into puberty? So many unbelievably inappropriate, jaw dropping, don't know what to say or do, can't believe this is my son situations throughout the day... Can anyone help this Autism House?

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  10. Appliance locks (that require keys!) on the fridge and freezer. Bolts on every door. The boy's door sawed in half so we can see what he's doing. A trampoline in the living room. The bathroom decorated like a party so he'll be motivated to use it.

    Many empty wine bottles in the recycling...

    I can go on and on. So grateful to have found your blog.

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  11. I LOVE this! And completely understand this line especially - "We will celebrate each milestone in a grand style in this autism house. For my kiddo has certainly earned every parade of praise we give him."

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