Thursday, January 13, 2011

things aren't perfect....

and they are almost never what they seem. am i right?

i have to remind myself of that often. do you?

*i'm imagining you all nodding your head yes right now. :)*

you see....my blog is a place where i can share and inspire and paint a (mostly) happy picture of what goes on in my crazy-busy chaotic life. where i try to find the positive in every situation. i love that part of blogging. that's why we all read blogs right? to be inspired.

that's why i hop around, anyway, to look & read & be inspired--gives me time to escape my reality for a while.

but, lately, i've been feeling like something's missing in my blog readings. i find myself wondering what life is really like for all these women who seem to have achieved perfection in everything they do. i'm craving for people to be more raw and transparent. and am reminded that i promised to do the same just a year ago.

since i don't keep a hand-written journal, blogging is my way of recording life for my children. and i feel like i'd be doing my girls a disservice to not share the hard stuff.

so today, i'm gonna practice some transparency. are you ready for this?

lately, there's something at war inside of me. something that i keep stuffing down. i know everyone struggles with something...but no one ever talks about it. why is that?

when i don't read (or hear) about anyone struggling i get this distorted perception and feel like maybe i'm the only one--even though i know the truth. but, somehow not being able to relate makes me struggle even more. it's a vicious circle, ya know.

i find myself playing victim to the chaos that surrounds me--the hand of cards that i've been dealt. oh how easy it is to play victim. am i right?

thinking things like...
it's not fair to have medically fragile children.
it's not fair that i have to live in this kind of pain every day with my back.
it's not fair that......(fill in the blank)

when those thoughts start going through my head that's when i know i'm in over my head and i better hold on for the emotional ride that's to follow.

i'm old enough to know that life just isn't fair. and i'm also wise enough to know that the circumstances we deal with could be SO much worse than they are. i try my absolute hardest to turn every negative into a positive---those who have read here for any length of time know that.

i also try not to let on as to how desperately i'm crying "MERCY". (on a daily basis. oy!)

why? i don't really know exactly.

not because i'm trying to hide anything that's for sure. but, maybe just maybe, because no one else ever talks about the hard stuff. i suppose it feels sorta 'taboo'.

but today, i just feel like it needs to be said.

when every little obstacle in front of me seems like a gigantic mountain to overcome, and seems nearly impossible to climb i have to make a conscious effort to remember that everyone struggles. sure it does seem like some struggle more than others.

but i have to admit, i get a little angry and resentful when i have to ask myself "why does no one ever talk about their struggles?"

angry at whom? i don't know.
the world, i suppose.

here's my point....twenty-ten was all over the place. there was lots of excitement, but lots of bumps along the way. bumps that feel like they'll never be smoothed out.

ashlyn's anxiety and sensory issues have hit an all-time high. when she was younger her little quirky ways were more easily overlooked and dare i say, some of these quirks were even a little 'cute.'

she was diagnosed with sensory defensiveness at the age of 3 1/2. for those of you not familiar, wikipedia defines sensory defensiveness as:

a condition defined as having "a tendency to react negatively or with alarm to sensory input which is generally considered harmless or non-irritating"
she's intolerant to quite a list of things. some she's become more tolerable to, other's she's learned to remove herself from the intolerant stimuli, and lots of other things she still doesn't know how to handle so she's developed anxiety.

anywho. she's getting older now and the anxiety that has a grip on her is causing an uncomfortable friction in our house. her anxiety makes her moody and irritable. difficult to reason with. difficult to get along with. makes her unable to be in a room by herself. unable to fall asleep in her own bed. and, about twice a week leaves her with debilitating headaches---recently diagnosed as pediatric migraines.

she's starting to realize that something about her is different than her peers.

i'm finding myself thinking....'she is SO not pleasant to be around'--most of the time. i love her, love her, love her, love her.......gosh, she can't even fathom how much i love her. but, i don't always like being around her.

and, i'm just now to a point where i don't feel guilty saying something like that.

for years i've buried guilt over feeling this way, deep inside. it's like the old saying 'hate the sin, not the sinner.' i don't not like her, i just don't like the hold that anxiety has on her life and as a result makes us all on edge and miserable.

i can literally feel a surge of adrenaline rush through my body the second i step out of my car coming home from work and walk into the house.

it's like i don a cloak of stress instantaneously.

add to that the moderately severe daily pain i'm in with my back, of which doctors can't find a suitable way to manage until surgery, and you have one crazy cocktail. :(

last week, i was down to my last nerve and felt all sorts of crazy when the stress of it all seemed to nearly boil over.

i wanted to run away. :(

have you ever felt so beyond stressed that you felt numb? that's how i felt. i've decided that it's a scary way to feel.

the stress of all this has been building and building over the past 6 months and as a result---i call it a survival/defense mechanism---doug and i have been bickering and arguing more than ever.

in reality we aren't fighting with each other, we're just taking out frustrations on each other.
it's mostly me being moody (from all the pain meds) and frustrated (dealing (not so well) with ashlyn).

i'm a problem solver and i don't have the answers to fix it and make it all better. i feel weak and out of control. depression is trying tighten it's grip on me and i'm fighting it harder than ever.

if you haven't guessed by now, i'm scared.

and feeling really vulnerable right now. replaceable even.

here's the truth of it all:
  • i love her. (if there was ever a question)
  • i want only the best for her.
  • every day i walk into my house i want it to feel like my safe place, instead it feels like a warzone. ashlyn's reaction to nearly everything has all of us constantly on edge. we argue. we discipline. we appologize. we overstep boundaries. repeat. repeat. repeat.
  • i can't say anything to her at all without her irrationally getting upset. this starts from the second she wakes up in the morning.
  • i'm finding myself getting impatient with her more often than not. walking away and counting to 10 does not work at all.
  • i fear failure in a huge way. and not being able to 'fix' her anxiety makes me feel like a huge failure as a parent. which is just a lie. i know this to be true. but it's a lie that i can't seem to let go of.
  • my marriage is taking a beating from the constant stress.
  • i'm the world's best at beating myself up over every little shortcoming. can you imagine how this feels?
  • parenting a special needs child is SO exhausting.....mentally, emotionally & physically.

so, obviously i don't have it all figured out.

i putting this out there in hopes that maybe one of my readers has dealt with a child with extreme anxiety &/or a child with sensory defensiveness that might be able to lead me to some information on how to parent a child like this.

because, i feel like i've tried it all.
there is nothing in my house that should feel as threatening as she thinks things are. :(
and i'm struggling....clearly ready to pull my hair out.

(sidenote: she is being evaluated further for the migraines with a CT scan next Wednesday & we have a behavioral health consult in the works too.)

(this post has been edited, only to correctly my typographical errors)

15 comments:

  1. I feel your pain Tania. I have a daughter with PDD (a mild form of Autism). She also has mild anxieties and low social skills. I am working with a great team of therapists here in Texas. It takes time and things will get better.

    Sometimes parents of kids like ours feel overwhelmed. It's o.k. and natural to feel that way. Take care of yourself too. It will keep you sane. I have so learned that this year.

    Learn all you can about your child's diagnosis and be proactive in helping her as well as helping yourself. A support group is awesome too. Google has been my friend. I've found so many resources. :)

    Sending hugs your way. Feel free to keep in touch with me. My email info is on my blog.

    Hugs,
    Angi

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  2. Tania, I wish you lived close enough where I could take you out for a girls' night on the town, because I think a little time out for you might be what you need to help you get a new perspective on your situation right now.

    No, I don't have a child with sensory defensiveness, but I did have child with special needs, and I know how it feels to be mentally, physically, and emotionally drained. And when that happens, we tend to not think as clearly as we would like. While I know right now you may find your situation impossible to handle, you must know that you have everything it takes to get through this.

    From following your blog, I have determined that you are a very strong woman. You deal with your own pain, handle sick children, run a etsy store, contribute to other online blogs and companies, and yesterday, you even inspired this crazy lady who was feeling sorry for herself, because of her own aches and pains, into running out to buy supplies and actually scrap something meaningful. So, thanks for that.

    I wish I had more advice for you, but I don't. I wish I could make it better for you, but I can't. All I can say is that I know you will get through this. God does not give us more than we can handle, even though to us, it feels like if we have just one more thing to deal with, we will lose it.

    Tonight, when she goes to sleep, stand in her doorway and take a deep breath and exhale. Give yourself a few moments of silence watching your precious little girl rest. Take a warm bath/shower and cry if needed. Feel very blessed, and I know that you do, that you little girl is still with you. Then try to get a good night's sleep so you can face tomorrow with a new perspective. And if all else fails, then you can contact me and vent out all of your fears, frustrations, and sorrows. Sometimes all we need is a willing strangers ear and to get it all out so we can fell better.

    Sending you much needed hugs. I hope tomorrow looks brighter.

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  3. I feel for you but have no help or real understanding of the situation (no kids), but I remember being a kid myself and my mum having two breakdowns, in part because of work and in part because of the stresses of family life (one very severely OCD brother and another with learning difficulties).

    You have to make sure that you're ok, that you're not going to crack under the pressure and that you can face your home life. Take time for yourself, and make sure your partner equally gets some time, go out see a movie, have a coffee with friends or shop, but have time away for you with something that you'll enjoy. Recharge.

    I don't remember my mum's first breakdown, I remember her throwing plates at my father and leaving the house, not coming home for a few days, but that is all. I was young, but talking to her now it was a year before she was close to being better.

    You have to look after yourself, so that you can be there for your family. I wish you happy and warming thoughts its all I have, I wish I could do more.

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  4. My kids can be difficult at times. We lost a best friend because she couldn't understand my son's sensory issues and she asked me to basically chose between our friendship and my son. No brainer, right? However, it was devestating because we really depended on each other, or at least I thought we did. Sometimes I have thought to myself that daycare is the best place on the planet! And the kids grandparents! People who can take up the slack when needed. Time to call in the reinforcements or find them in your community because it sounds like you need a little break. For me, I have to remember that in the middle of the winter, in January, I am a light-deprived mess and that it will get better. I don't know about you but I craft so I won't go crazy and kill my kids (well, not actually "kill" but be insanely grumpy at them). Gotta find those things that will help you from going crazy, really. This probably isn't particularly helpful but know that you are not alone.

    Oh yeah, and I have this idea of a scrapbook- maybe fiction- maybe story- of a disfunctional family. A scrapbook that highlights EVERYTHING about this family, the weird, the bad, the loopy.

    Or just read the Amy Sedaris book about crafting because it REALLY looks like a stress-reliving laugh. Crafts for Poor People, I think it's called.

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  5. Hey friend, just wanted to send you a great big hug and thank you, sincerely, for your awesome honesty! I truly value your willingness to talk about the less pleasant things in life and am inspired by you and your outlook! Thank you for sharing!!

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  6. I know we have talked about different diets in the past, but it's been a while and I have figured out a lot more for our issues.

    Jacob has sensory issues as well, and though he does have to be on a gluten-free diet because he is intolerant, that doesn't really help with the sensory and anxiety stuff (it might some, but not enough to really matter), but I have discovered something that does help... no chemicals in his diet and limited chemicals in things like shampoos and cleaning products. The more corn syrup (read your labels, it's in everything) and food coloring, etc. that he has, the WORSE his sensory issues.

    As for me - my migraines are directly related to diet. I would strongly urge you to try some different diets with her - it's hard and overwhelming while you are figuring out which foods cause symptoms, but only at first and it's SO worth it in the end. Jacob is as sweet and as gentle as can be as long as he isn't eating chemicals and corn syrup (which is made from chemicals basically). And once I got it out of his system, he can handle it now and then - but I can always tell when he's had too much, and so he avoids it for the most part. Natural foods can be a little more expensive, but I'd say they are cheaper than medical bills. :)

    I know you want the best for your kids, and I pray for you guys often and all your health issues and will continue to do so. I do hope you figure out some solutions that work for you! Please let me know if there is anything I can do!

    (((hugs)))

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  7. I don't have a child with this situation, but do have one with severe food allergies and am wondering if maybe a change in diet would solve anything at all. All we ever hear about these days is how much the food supply these days f-@ks with our bodies. Hope you can find a difinitive answer soon.

    Motherhood is the single hardest job in the world. It doesn't take much to make me cry and feel guilty...

    Hugs and prayers...

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  8. Sorry...that should've said definitive... :-)

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  9. My sweet friend, we have already talked about the hard days and the trials of each one. Chin up and know you're loved and prayed for. Hugs.

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  10. Tania,

    No solutions or advise here as I don't have a special needs child. but I did want to say that I wish you and your family only the best and I hope and pray that you do find some answers/solutions somewhere, sometime.

    Sending you a great big HUG from Georgia. and Hoping that you have a better day today than yesterday and an even better one tomorrow!

    One of my favorite quotes is "There's no task ahead of you greater than the power within you"

    Hang in there my dear friend!

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  11. Well, all I can do is sympathize with you. I have been getting severe headaches lately ... which usually start at 3 o'clock. By the time work is over and I get home ... not a pretty sight! I have the three boys (7, 5 and 2.5). My five year old has speech apraxia (he has trouble forming words). And I am so worried over him. He will start school next year and I don't know if he will be ready. I think half the time we really don't know what he does know! And I have a feeling he does have sensory issues, to a degree. But nothing diagnosed. But boy can he throw one more tantrum! but then so can my 7 and 2.5 year ols, lol.
    But you saying how getting home makes you feel the anxiety ... oh. I even said out loud, that is me!
    I do have to say, there are times I daydream that my hubby and I separate ... but rent an apartment and switch staying at home with the kids every week. Is that horrible? Yeah, but oh. Can you imagine a week OFF!
    So you are not the only one wanting to run away. Just so you know.
    I do wish you lived near me ... we would just throw our kids in a room (ha!)with lots of toys and a juice/snack dispenser, and we would sip tea, coffee (Bloody Mary's).... lol.

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  12. Tania, Tania, Tania...I think I have commented to you before that our lives are somewhat similar. My 6 year old, middle child was diagnosed last year with Sensory Processing Disorder (not exactly the same as what your daughter has, because she is not always defensive, sometimes she is sensory-seeking, but so so so similar!!!!) If you have ever happened upon my blog you will see that she is the devil-re-incarnated! LOL

    I can relate to what you say so much! When she is gone (at Girl Scouts or school or birthday parties) life at home is perfect! It's quiet. It's peaceful. It's safe for my other two children.

    We began treatment (OT, Social Work, Psych visits) after the diagnosis, but I knew that there was something else wrong. Something more than just the sensory issues. So, I continued to search for answers. After a long, painful, tedious, search, we arrived at our answer...she is also Bi-Polar. (Enter jaw-dropping here!) It sucks! It sucks more than I can explain. Only those mothers with children of special needs can understand how MUCH it sucks!!

    I am in a constant state of un-easiness. Perhaps I drown myself in scrapbooking and cooking and crafting as a way to escape but also as therapy.

    I wish we lived closer or could be there to support each other more, but just know that there are others out in this crazy internet world who can sympathize and empathize with what you are going through and remember that you are not alone!

    God bless,
    Shel

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  13. I don't have any more advises to add, but I wated to tell you that I know what you mean when nobody else talks about their problems, I really "hate" when other mothers wanna make me think their lives are perfect and their kids behave well, and when there is an issue they solve it right away with the advise of a book or someone. It makes me feel I'm a bad mother, which I know it's not true now that I'm ok, but not during those stressful times.
    So i wanted to tell you that I do struggle with my kids, the stress goes on to the marriage, i feel miserable sometimes...and all that is without having to deal with pain and a special needs kid.
    I have looked for help, with a children psicologist and it has been a great help,things improve, things go bad again, then improve...but in general had made me feel better and understand that life isn't perfect.
    Big big hug, and I hope things change to a better stage where you can get some strength to handle the more difficult times

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  14. I came back to say that my life is not perfect - just, ya know, to get that out there... ;) my husband and I love each other and that is what we portray online, but we still have issues like every other couple. Our kids are not perfect - though the "good things" are the things we tend to "brag" about online - but they still have issues. Don't feel alone! :)

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  15. Tania, when you talked about not knowing what to say and when because it might cause a reaction from her, it reminded me of my daughter's teenage years...and how peaceful it was in the house either when she was asleep or at school.
    I pray that your household becomes calmer and longer periods of peace. I am so thankful that you have a wonderful husband. I can truly understand about your back pain and the frustration that is causing with you. I have no advise but please keep posting your thoughts and feelings so we can keep you in our thoughts and prayers.
    {{{{HUGS HUGS}}}}

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