Wednesday, August 21, 2013

Frustrated and Needing to Vent

Confession: Taking Addison outside of our natural environment of home has accented her disability to me.

You know how I often say that I don't notice Down syndrome in her much anymore? How we have just fallen into our normal, and I don't think about it as much as I did in those early days?

Well imagine if you will having to unload two toddlers out of your double umbrella stroller to get through airport security. Imagine having no way to tie them to your side for those seconds, and knowing for a fact that you couldn't trust your 3 1/2 year old to stay by your side for thirty seconds while you fold up the stroller. Imagine knowing that your only hope was in your 23 month old, who DID stay right next to you while your oldest child immediately took off into the crowds of surrounding people. Imagine having to trust a complete stranger in line behind you to hold her (after chasing her down for you) because she refused to obey and pretended like she didn't understand your very simple instructions of STOP and STAY.

Imagine having to wrestle down that same 3 1/2 year old on the plane. Who refused to leave her headphones on to watch her movie because she didn't like the sensation of something on her head. Who easily worked her way out of her special harness due to her double jointedness. Who wouldn't be reasoned with- or bribed. Who couldn't talk to you- but loudly yelled gibberish that you couldn't understand (but no doubt annoyed those on the plane around you) while she fought and screamed to get down and run the aisles.

Imagine feeling completely frustrated and thinking "Why won't she just act her age?" I was tired. I was juggling Carter too. I needed my big girl to act like a big girl. And she wouldn't. She couldn't?

Sure, she's not an adult- and I don't expect her to behave like one. But honestly Carter acted more maturely than she did- and he's not even 2...and he's a rather rambunctious child.

Imagine for the next few weeks her constantly running, bolting, escaping toward danger every time she isn't contained in some way. Imagine every bit of obedience training you have worked so hard on flying out the window.

Sure- every child can be stubborn. Every child can show regression in behavior on trips. But this is different. This has been noticeably- Down syndrome.

I am exhausted. I am freaking out at the thought of this new baby now because her behavior has been so unreliable that how in the world am I to juggle a third when my oldest won't even STAY when her safety depends on it? How can I take care of all my children when my oldest child isn't growing past the behavior pattern of an 18 month old? Will she ever? Do I have to put it on Carter to be the big brother? So I will have a 2 year old, a newborn- and a little girl somewhere in between who is supposed to be my big girl, 4 year old helper? Will I just never leave my house again?

So many times I wish that Addison had been my youngest. So many times I wish I had my two big boys- and then my baby girl that they could help me with. Am I being ridiculous to still want a big family after Addison? Should she have halted my plans to have any more kids for at least ten years while I try to get her semi independent? While I get older and our childbearing window gets smaller and smaller?

This trip has been extremely frustrating with her.  Yes, Carter being so close in age to her has done WONDERS for her development, and I can't help but think that this baby will too (especially as Carter starts to really pass her up). But at what cost? Having a 4 year old, 2 year old, and a newborn is not an unheard of combination. Is it so unreasonable to think that Down syndrome in that equation makes it impossible to carry on? I still say that parenting a child with Down syndrome IS just like parenting any other child...but then you have these random moments where it isn't- at all. It is harder. And takes more work. But still somehow the same. (Carter has held his own frustrations this trip. And when Addison acts out? Chances he's not too far behind her because they so easily influence each other's every move.)

I will say this- my siblings have been amazing to help me in these single parenting weeks far away from home- each taking charge of one toddler when we go out on outings together. My older sister (and husband) has been very understanding with us tearing about her house.

I love Addison dearly, and of course I don't regret having her in our family. This is just a vent. A frustrated, tired Mama who is tired of almost losing the $1,000 orthotics for the hundredth time because Addison takes them off and randomly discards them while we're out and about. A tired mama who is dreading the flight back in a few days (but at least Aaron is coming to help with it.) A tired mama who still winces at Addison's escape into the big hotel last weekend. A tired mama who has almost given up on the new/old eating struggles. A tired mama who can't chase down a bolting child one. more. time.

When I sit back and choose not to fight certain battles because I just can't do it all right now, I see the I looks I get that suggest that I'm being a slacker mom. Maybe I am. But I am just trying to survive. If slacking in certain areas is necessary for this? I'm on board. (i.e. my children wearing only their diapers except when we go out in public. I know. SLACKER.)

I have been hard on Addison this trip. I know I have. I feel like I should be surrounding her with only love and cuddles because surely she is feeling out of her element to be so far from home. But I can't stop there. I need her to learn. I know she can. I just don't know what it will take (or how long) for us to get there.

I am looking forward to heading back to our normal space early next week. Not because we haven't enjoyed being with family- or because the visit has been bad. We've had a wonderful time with family- and I look forward to even sweeter visits this weekend (as Aaron will be joining us.) Also, it has been so helpful for Addison to play so closely with her almost 3 year old cousin. (She has been slowly improving in certain areas as she models her behavior.) It's just that it's easier to do all of this at home. It's easier to do all of this when Addison has the structure of school...and the house that she is used to....and the simple home procedures like having a set path to show her which direction to walk from the car to the house.

The comforting thing is- 3 1/2 years into this journey, I know that this comes in stages. The frustration, the pain, the wondering- it all fades away eventually and a happy, contented, joyful normal resumes. I think it would be unfair to expect the happy normal to be our only normal. Or even the frustrating normal to be the only normal. It makes sense to me that parenting a child with a disability includes both. And even though today I am venting...I know that even in a few days it will be better. This I have learned on this journey. My job? Is just to hold on for the ride.

I finally put her in her brother's shoes (which are too big lol) to keep orthotics safely packed away
Running away so much is exhausting too
And refusing to eat certain foods takes a certain look
One thing always guaranteed to bring good behavior and good eating? Why chocolate chip pancakes...of course
more pictures on IG (eanfe)

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