Tuesday, February 28, 2012

What did I do wrong?

As a mother of a child with special needs, I often ask myself 
"What did I do wrong?"
"What could I have done better?"
"Why is my child like this?"

The really shitty thing is that I have no idea what the answer is to any of those questions.  As I reflect back over the past 6 1/2 years, there are definitely events that stick out in my mind, events that could have been prevented, and I wonder...."Is that what caused this?"

The day Nate toppled off the bed was awful.  We had just gotten home from the store, and I was going to set my purse down on my dresser.  I put him on the bed (not even thinking that he'd roll right off), turned around to set my purse down, and from the mirror, I watched him flip right off the bed.  Just like the movies, everything happened in slow motion.  As quickly as I could, I raced over to him, scooped him up, and we both sat on the floor crying our eyes out.  I felt like a horrible mom.  Who the hell leaves their 10 month old unattended on a bed?  He wasn't crawling yet, but he sure as shit was rolling everywhere.  I should have known better.  Did that fall do something to his brain?

At 13 months Nate got a super high fever.  We had just gotten home from vacation, and he started getting irritable.  One morning he woke up with a 103* fever.  I called the doctor, and the nurse like said to just give him Motrin and Tyelnol, and not to worry.  Like a dumb-ass I listened (and who wouldn't- it's a doctors office, right?).  It was the first time Nate was sick, and I didn't know any better.  After the first 24 hours, I brought him in for an appointment, and they said there wasn't anything wrong.  I was told "It's probably just a virus."  His fever lasted for 3 days.  On the 3rd day, I brought him into the office again, and they found the beginnings of an ear infection.  He was given a prescription for Amoxycilin.  Well, we found out the hard way that Nate is allergic to it.  He broke out in an allergic rash all over his entire little body.  If I had taken him to the hospital instead of the doctor, could they have brought down his fever better than Motrin?  Did the fever fuck up his brain? 

Did I not give him enough fruits and vegetables as a baby?
Did I take the right kind of prenatal vitamins?
Should I have given him formula instead of nursing him?
Did something happen during birth that they didn't tell me?
Did I interact with him enough as an infant/toddler?
Should I have read or talked to him more?

None of these questions can be answered well enough for me to be satisfied.

Tuesday, February 21, 2012

A Word of Warning...

Over the years there have been so many things that have been said to me that have really gotten me fired up, but I have chosen to bite my tongue.  So, in order to avoid a future freak out on my part, or the part of any parent of a child with special needs, here's what not to say to us:

1.  "You never know, one day he might just wake up and start talking."  Please, I've fantasized about this day for years and years.  It's not going to happen.  Nate won't just wake on one day and be able to talk.  It's going to take years of hard work, muscle training, and practice.  I don't care if you once knew this guy who's cousin's-friend's-sister's-mailman's-ex-brother in law's child was non-verbal and woke up one day talking in complete sentences.  It's not going to happen here.  

2.  "I could never do what you do everyday." Ummm...yes you could.  You could because if your child had special needs, you'd man up and deal with it.  You wouldn't abandon your child, you wouldn't turn your back on him/her.  You'd be the best parent you could in that situation and do what I do everyday.  Every child deserves the love of his/her parents, and you would provide that to your child, regardless of any (dis)ability.

3.  "Have you tried (fill in the blank)?"  Yes, yes, and YES.  I've read books, tried diets, therapies, doctors, etc.  I've read, read, and read just about everything that has been published.  I know you're just trying to be helpful, but most parents who have special needs children have done their homework.  They've done everything they can to ensure success for their children.  So to answer your question...YES, I have tried (fill in the blank).

4.  "He's so lucky to have your as his mom.  'God' only gives you what you can handle."  Yes Nate is super lucky to have me as his mom, and I'm super lucky to have him as my child.  As for 'God', I'm not going to get into my beliefs right now, but seriously....'He' only gives you what you can handle?  I have Nate because I'm a strong person?  Really?  You're seriously telling me this??  So, if I was a weak person who couldn't handle having a special needs child, I would have a typical child?  Well in that case maybe I should be weak.  I'm going to love my child regardless of whether I'm weak or strong, he can talk or can't, or whatever the situation may be.

5.  "I feel so sorry for you."  OOOHHH, this one really gets me.  I've only heard this once, but I immediately wanted to punch this person in the face.  My situation may be more difficult than the one you have been given, but please don't feel sorry for me.  My life isn't picture perfect, we have our daily struggles with Nate and his issues, but instead of feeling sorry for me, offer to help me out.  Be proactive instead of pitying.  Take him for a walk, donate to CASANA in his name, come over and play with him, but don't, I repeat DON'T feel sorry for me.

So now you're probably asking yourself, "so what the hell, Adrianne?  There are so many things that you don't want to hear.  What do you want?"
Here are some safe conversation starters:
1.  How is Nate doing in school?
2.  Has he started his riding therapy yet?  How is that going?
3.  Is there something I can do to help?

and simply

I love you and am thinking of you guys.

Tuesday, February 14, 2012

Kickin' Boo-tay

Nate has been on an IEP for the past 3 1/2 years (since he started preschool), and he has always done well when it comes to mastering (or almost mastering) his goals.  I thought his IEP for this year was going to be a little difficult because I thought that the goals might be a little over his head.  In all honesty, I didn't think that he would be able to master very many of them.  Boy, was I wrong, he's kicking some serious butt when it comes to his goals this year.

We had a conference with Nate's intervention specialist and his regular classroom teacher a few weeks back, and they had only positive things to say about him, his work in the classroom, and his accomplishments.  He received all S's and one S+ on his report card, and is spending more time in the kindergarten classroom than I ever thought possible.  GO NATE!

Some of his IEP goals included-
**Recognizing money and it's value--MASTERED!
**Using one to one correspondence to count objects to 25--MASTERED!
**Writing his first and last name so that 2 people can read it--75% accuracy!

He is also counting to 100 and skip counting by even and odd numbers, 5's, and 10's up to 100.  He has mastered all 23 of his kindergarten sight words, and when given a choice of 2 letters tell me which one a given word begins with (most of the time).  He is beginning to add, and subtract, and loves anything to do with numbers.  Do I see a degree in accounting in his future?  Maybe, but he also loves houses and wires and pipes, so maybe he'll be an architect!?

Nate is spending at least 1.5 hours in the regular kindergarten classroom, and whenever his intervention specialist calls me, he is always saying great things about his progress.

I'm so proud of everything Nate has accomplished this past school year, and am looking forward to many many more successful years to come.  I hope that Nathan continues to have a passion for school and learning throughout his years in Strongsville. 

Thursday, February 9, 2012

Thank you!

I've been hearing from a lot of different people lately regarding my blog.  Some of those individuals are people I have contact with on a regular basis, others I haven't heard from in years.  I want to say to everyone:

THANK YOU, FROM THE BOTTOM OF MY HEART.  Thank you for your support, your kindness, your stories, and your love.

I'm not writing this blog for sympathy.  I'm not writing this blog for attention.  I'm not writing this blog  as a way of saying look at me, I have a kid with special needs.

I am writing this blog as an outlet.  As a way of sharing my life with the many people I love.  It's a way for others to understand what I am going through.  

I've heard from many people "I had no idea (fill in the blank)"  I'm sure you didn't have any idea.  I am not a complainer, I don't like to talk about things that are going wrong, and I don't like people feeling bad for me.  I hide a lot, mostly because its just easier that way.  My closest friends and family members usually know what's going on in my life, but other than that, I generally keep things private.  Until now.

It's remarkable how many people seem to have stories, advice, suggestions, and concerns.  I've read every single email, comment, Facebook message and text that have come through.  I know that I haven't answered many of them, but please know that they are ALL appreciated and a lot of them have brought tears to my eyes, and have touched me in ways that are beyond explanation.

So again, with all that I have.  THANK YOU.

Wednesday, February 8, 2012

Dr. Jack(ass)

Someone tell me what I'm doing wrong, and what I need to do to make things right!!!!!

That is what my life feels like right now.  We had a neurologist appointment today, and for almost the entire appointment, Nate laid on the floor screaming.  Who knows what he wanted?  Not any of us.

We talked to the doctor, expressed our concerns and why Nate isn't listening to us, but IS listening to everyone else.  Basically he just referred us to another specialist.  He wants Nate to see a Psychologist in the UH Sleep Clinic.  OMG, another friggin specialist?!?!?!? 

We spent 45 minutes listening to Nate throw a fit in the office, while trying to talk over the noise.  The Dr. (I'm gonna call him Jack) took notice of the tantrum but wasn't overly concerned, saying that there were no tears so he most likely wasn't that upset, just mad because he was locked in the office with us.  He pretty much disregarded his Apraxia and PDD-NOS diagnosis, saying yeah he could have those issues, but that doesn't tell us WHY he's acting this way.  Ummm, this will be the last time we visit Jack(ass).

Our hopes are busted.  We were hoping (yet again) to leave his office with some answers, some guidance, something other than another name to look up and make an appointment with.  We left with nothing except a screaming 6 1/2 year old.  We've been directed to so many different specialists and I just want ONE to help us out.  I'm tired of tests, blood work, appointments, therapies, etc.

According to Jack (the Doctor), since Nate is only acting up around us, it's probably not a global concern.  We are basically the problem and we need to figure out what is going on with us in order to figure things out with him.  I guess we need to figure out why Nate feels like he can treat us like shit.  Why Nate feels like he can take advantage of us.  Why Nate feel like he doesn't have to listen to us, and laugh in our faces when we try to discipline him.  Why Nate completely disregards basically everything that we ask of him. 

I don't want to see another doctor.  I don't want to fight with my child.  I don't want to yell.  I don't want to have a battle every night at bedtime.  I don't want to feel this way anymore.

I want to know how I can fix things, and get my child back to the happy well-behaved boy that he used to be.

Tuesday, February 7, 2012

Welcome to Holland


Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." 

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.


This always makes me sad.  I am torn between being in "Holland" and being in "Italy" with my two kids.  I have met some phenomenal people in Holland and they are people who have given me strength, hope, and love.  They are people who have become good friends, have shown me support, and have been there to say "I know what you're going through" and "This totally sucks".  Sometimes I wish that I never had to deal with being in Holland, and that both of my kids were Italy, but then I think about all the amazing experiences I've had, all of the amazing people I've come in contact with, and all of the growing I've done, and then I realize how much I love Nate even if he is "Holland" instead of "Italy".

Friday, February 3, 2012

Agony of Defeat

I can't even begin to express how I'm feeling right now.  Things have been completely out of control at my house, and I'm about to lose my mind.

I'm the mom who yells.  I'm not the mom who yells occasionally, I'm the mom who yells Every.  God. Damn. Day.  I don't just yell, I scream.  I get so mad and irritated at the things that Nathan does.  We've tried punishment, we've tried taking things away, we've tried bribery.  Nothing works at all.  He just doesn't care.

Today I cleaned up about a gallon of water from the kitchen counter.  He thinks it's really funny to turn the kitchen faucet so it's facing to the side and then turn the water on.  Well know what happens then?  You guessed it, water gets all over the fucking counter.  Guess who has to clean it up?  Me.  Me and Matt.  It takes about 6-8 towels (bath towel size) to contain the mess.  Did I mention this happens about 4 times a week?

Nate got put in his room while I was cleaning up the water mess.  Well he didn't want to be in there so guess what I found when I opened the door?  I found his full laundry basket turned upside down, pillows on the floor, clothes ripped out of his closet, an entire box of wipes pulled out of the container, and random things thrown off of his dresser.  Nate cleaned up most of it under my supervision, but that won't stop things like this from happening in the future.

He wanted some fruit snacks before dinner.  The answer was a simple no.  I don't mind him having some after he eats, and that's what I told him.  Well, that wasn't good enough.  He decided to climb up on the counter and get them himself.  I caught him doing this, and told him to get down.  He was so pissed off when I took the fruit snacks out of his hand. so he decided to take a glass bowl and throw it on the ground.  Great, another mess that I have to clean up.

The boys were locked in the basement while I vacuumed up the glass.  Again, Nate is not happy being confined, so he throws another fit.  I enter the basement to find the DVD rack completely spilled out and DVDs all over the place.  My Scentsy candle warmer on the floor (good thing he didn't break that, because it would be the second time that happened), couch cushions on the floor and the ottoman overturned.

I lost it.  I completely lost my fucking mind.  I don't think I've cried this hard in a long time.  I don't know what to do anymore.  I can't control my kid.  I hate this feeling, and I can't stand dealing with his tantrums/outbursts/fits/destructiveness.  My house is turning in to one huge shithole because we can't keep anything nice anymore.  Most of the time I don't even bother cleaning up his mess because I know in 10 minutes it will be ruined again.  Nate just destroys everything.  I feel so defeated.  I'm fed up, frustrated, and ready to give up.