And now what?

It's a very surreal feeling when you are practically begging to hear from a health professional that something is 'wrong' with your child.  (Yes I know nothing is wrong with them, but you know what I mean.) 

I've known for about 5 1/2 years that something was off about Aaron and I started tracking it.  All the night terrors, sometimes two or three a night, sometimes lasting for an hour or more of just trying to hold him and listen to him scream, mood swings, that were completely random and sometimes all day, pressure seeking techniques, that would literally knock me over sometimes, he would push on me so hard just looking for that release, ticks, such as eye blinking, hand slapping, shoulder shrugging, nose picking, all of it.  I tracked if any of it would change according to his diet, according to his environment, according to his sleep patterns, everything.  I did what I was 'supposed' to do, even though I would keep myself awake at night constantly questioning myself.


Aaron

 Was it him or was it me?  How dare I ever think for a second that this beautiful gift had anything wrong with him?  Should I just stop searching now and deal with it all the best we can?  How the hell will we deal with it?  Should we have had children?  How did this happen?  Was it something we did?  They seem to fit in for the most part at school, most days, but them let it out at home?  It has to just be the home.  We are horrible parents.  There is no other rationale some days.  It's a constant internal debate.

We have had so many successes and we sure do celebrate and recognize them.  With each one comes the silent struggle, "See he is fine.  Everything is good.  We can do this.  Nothing is wrong with him."  Then the scale tips back the next minute, hour, day and it's more than obvious that things shouldn't be this way.  I was recently speaking with a dear friend about outside support and how we are eligible, because of the boys' issues, and that I should take advantage of it, but I haven't.  I told her it just doesn't feel right.  They function, they go to school, they can talk, they are so smart.  She reminded me, and it keeps playing over in my mind, that we have "created a new normal and it isn't an easy life.  Most others couldn't step into it for a minute."  Boy that is so true.  For example, right now Adam is in bed screaming "Mommy you hate me.  Why did you birth me?  I was made to be killed.  I hate today.  I want my head to break open.  I know what I wish for."  Over and over and over.  And that's not normal.  He had a hard day.  I'm sure at school it probably looked like he had a great day, but he had a field trip and although he enjoyed it, he was over sensitized and has been miserable and cranky since he got home.  The worst part is, he doesn't know why he is grumpy, he knows he had a great day, he just doesn't know how to process everything he did, felt, heard or saw today.  This from a boy that everyone makes sure to tell me is so kind and sweet, and he sure can be, that is the truth.

I worry for my boys.  Constantly.  I worry that they will be vulnerable to bullies, peer pressure, low self esteem, depression, and many other things too horrid to put into type.  I hardly ever know that what we are doing for them is what they need.  Truth be told, when my house goes to bed, I cry a lot.  It is a tough life and it does take a toll.  All we know for sure is that we love those boys more than air.  They are our hearts and I breathe them constantly.

Today I hold in my hands Aaron's official diagnosis and even though I knew what it would be, for the most part, it's shattered me a bit to see it on paper.  5 1/2 years of independent research, talking to other parents, filling out literally dozens of forms (some over 30 pages long), has all resulted in this.  Aaron officially has Tourettes, Aspergers and ADHD.  The ADHD is debatable in my opinion, but worth a thought I guess.  I'm hoping it is not there for medicating purposes because I'm not convinced on that route yet.  I've always known he has Aspergers.  It has been so difficult to get diagnosed because he is "too social", but he actually isn't very social.  Adam is more social than Aaron but Adam got his diagnosis of Aspergers very easily.  I knew it was Aspergers and now being told that in fact it is Aspergers, I feel vindicated.  Don't worry, it's far from a glorious victory because ultimately, my child (both my children) have Aspergers.  Which is fine and they will learn to live with it and I know they will do great things in their lives, but it is a far from normal life.  And this is just the beginning.

And Adam finally calmed down enough to scream to me that, "I need a hug and kiss.  Sorry mom."


Adam


So now to work on me as well.  There is no need for my late night battles second guessing and constantly questioning our life.  It's all there in black and white.  My children both have Aspergers.  I hardly know what to do with myself now, but that won't last for long.

Okay, I feel like I'm babbling.  So let me wind this down with something profound, to me anyways.  This has been a huge struggle to this point.  No word of a lie.  From dealing with our everyday craziness, to constantly being available for my children, to changing our lifestyle to facilitate theirs, to fighting for a proper diagnosis.  I very humbly say, I have been told so many times how great of a mom I am and it's hard to hear sometimes (most times) because in the moment I always feel like the rug is being pulled out from under me.  I guess, ultimately the only people who ever need to tell me that are my children.  Whether or not I believe that to be true or not, there is one thing that I know I do well for my children and it is something that is lacking in many parents and it is a detriment to the world.  I am an advocate for my children.  I do not back down when it doesn't feel right.  I look for solutions and I make them into law.  If I have any doubt in my mind about anything where my kids are involved I ask questions until I get answers.  Where my children are concerned, I leave no stone unturned.  I answer their difficult questions and fully believe if they have the curiosity to ask it, it deserves a proper answer.  I get involved.  I show up.  I think into their future and try to equip them with the tools they will need.  I'm a mama bear to the extreme.  Don't get me wrong, that does not mean that I am an overbearing, paranoid, helicopter mom.  I watch from afar.  I give them their necessary space and respect their personalities and characters.  But I also make sure to ask them the right questions, I make sure to watch their reactions to things, I make sure I know them enough to know when something isn't right for them and I do everything to fix it.  I make sure that the people around them are safe people to be around.  If there is a lesson in something that my child needs to learn or know, I make sure they experience it.  Yes they have Aspergers, but the world around them for the most part does not care.  The world around them will still spin and they need to find their place in it and it is my job to help them find it.

I see many many kids who's parents refuse to admit when something is up with their kid, they don't want to admit that their child might be a little different, so much so that the child suffers.  When that child suffers, what happens?  What is the ripple affect?  Does it just affect the child, the family, the community, the world?  When we decided to have children, we took on an obligation to the world to raise them with compassion, dignity, love and respect.  We have an onus to society to raise conscientious, responsible individuals.  So when a parent wishes away a child's problems, it only creates more problems, but it goes so much bigger.  Please pay attention to your children.  Please help them grow.  Please teach them the tools they need to change the world.

Here is a glimpse into an aha moment that I had with Adam.  No surprise, I love dogs.  Boxers in particular.  I was looking through facebook a few days ago and showing my son Adam some pictures of a boxer who was a skinny little flea covered rescue but is now in a home of my friend (yes N&R it is you) and he is thriving.  More than thriving, he is doing amazing and boy does it show.  It overwhelmed me and I teared up a bit.  So Adam said, "Why are you crying mom?"  I said "because he needed them and they needed him and it changed the world for them, it's beautiful to see when it happens."  He said, "but one person can't change the world."  I said, "Why not?"  He smiled.  I smiled.  He got it.  His eyes twinkled and he hugged me and said, "We can try though."

Goodbye to DeJa

I am often asked how I find the time for dogs in our very busy life.  I can't imagine our life without dogs.  I honestly don't know what we would do without them.  They have taught us, laughed with us, cried with us.  I truly feel that the best gift we have given to our children is to know the love of a dog.  It's unconditional love at it's finest and I'm so happy to see them revel in it.  This blog is dedicated to and in the memory of DeJa.  She filled our lives with love, laughter and happiness.

 

DEJA

Jan6/01 – May3/13

DeJa came to us at 6 weeks old.  The tiniest little thing you can imagine.  We had no idea how huge she would become to us.  She was our first pet as a couple.  We lived in the city, wanted something small and cute.  We believed the person who told us that pugs didn’t shed.  So not true!!  I would put her in my purse to go grocery shopping.  She was so small that Jake used to put her in his front jean jacket pocket when he was outside.  She even used to go with us for rides on Jake’s Harley.  You can imagine the looks from kids and adults alike when they would notice her in her little pouch between us.  We never worried about the house, she stood guard all day on the back of the couch looking out the window, screaming at anyone who came by.  She had attitude and was so smart.  She even stole an entire box of chocolate turtles off the coffee table one day.  Hid the box and every last turtle while we were at work.  We had no clue.  She’d come out chewing chocolate every once in a while.  We found all the evidence when we moved.

DeJa was only one when we moved to our acreage; it was not too much yard for her.  She would chase off anything that came around, including deer.  Man could she run.



DeJa with Storm



She adopted four white boxers and two skin kids in her lifetime.  Storm, our first boxer, had a special place in her heart.  She was so small when we got her that DeJa, at only a year, took over immediately, cleaning her everyday from head to toe and loving her like she was her pup.  That also included scolding her when needed.  Decker, our first rescue, equally found safety in the paws of mama DeJa. 

DeJa on Storm

Around this time we had our skin kids.  She loved them and they loved her.  She gave them everything.  Danced for them, rolled over for them, ate treats from them, made them laugh, cleaned the floor up after them and loved them.  We took some photos the other night of DeJa and our family and a ladybug landed on her, Adam scooped it up so happily and reminded us that he could get a wish.  He made it quietly.  Then the other day he told me in tears that he wished for DeJa to get better and she didn’t and he didn’t understand.  I told him she was better at the bridge.  And then I cried with him.





DeJa and Decker

When Storm left, the two of them became very close, snuggling each other every night.  As she aged she quickly found solace in his strength and always looked to him for backup.  Velvet joined us a little later and although they didn’t see eye to eye at first, two alpha females, they quickly found their mutual respect and I often found them sharing a space.  Saying goodbye to Decker shook her a bit.  You could see her age more and more after each of them left.  We added Gunner to our pack and she didn’t skip a beat.  She was curious and cautious with this one.  Not sure about all his energy as she was a senior by then.  She kept out of his way but still kept him in place.  He knew she was the Queen and respected it.  So funny to watch him try to reach for a toy that was close to her.  He would never just go and get it, he would stretch his leg out as far as he could and turn his head away trying to reach it without disturbing her.  She wouldn’t even look directly at him, but if he would get too close, she just needed to growl a bit and he would take off running.  She was an excellent boxer mama.  Velvet has been down since she left and looking for some extra reassurance from us.

DeJa on Decker

We are missing our DeJa (AKA  DeJaVu, Dingo, Delinquent, DeJaLee, DeJa Bean, Pugface).  Missing her snort and her attitude.  She was priceless.  So much personality, compassion and love in such a little girl.  She never let a doorbell go unnoticed.  Never let you slow down in the car without screaming (literally).  Never left a tomato plant in the garden without her face being rubbed on it.  She'd find them everytime.  Never left a treat uneaten.  Never left a heart untouched.  And oh man, if you tried to get near her while she was chewing on a steak bone, her eyes would pop out, her fur would go up and she would growl like a monster.

Rubbing her face on the tomatoes.

Turns out DeJa was born with one less vertebrae than a pug should have, which we never even knew until the end, but the space that was there was filled up with calcification and was putting pressure on her spine causing her numbness in her legs and making her fishtail a lot when she would walk.  We tried all we could to help her, but in the midst of our last round of therapy, she collapsed a windpipe and it really started to set her back.  A couple days before we said goodbye, her sight seriously diminished and we knew that the numbness was starting to affect her organs.  It was time.  For all she had done for our home and our hearts, it was time to let her go with some dignity.

PugFace

I know it’s always a topic of conversation in households with pets and kids what to do when saying goodbye to a pet, especially in a case where the pet is euthanized.  Well, our boys always need answers and always need options, so we discussed it with them.  Letting them know that when you love someone sometimes you are called on to do something difficult for you but beneficial for your friend.  DeJa was in those shoes and we needed to do what was right for her.  We explained the process and asked if they wanted to stay home or come with.  They chose to come with.  And at the vet office they could sit in the waiting room or come in the room.  They wanted to come in.  And they did.





DeJa and Gunner

DeJa left this world with her entire skin family at her side.  Each one of us petting her and telling her she was loved and she was a good girl.  Her breathing had been really hard all day and all those she was calmer from the sedative, she was still panting loudly.  Only two or three seconds after the doctor was pushing the first of two vials of medicine into the catheter, she stopped panting.  She was already gone.  She was that ready.  She was so peaceful.  We pet her some more, wrapped her in her blanket and kissed her goodbye.  She was Jake’s heart dog, I’m sure of it.  He’s having a really hard time as we all are.  But we know it was her time and it’s never easy to lose a true and loyal friend.  She saw us through so many things in our life together.  Our house, our wedding, our kids, it’s hard to know what to do without her.



May 2 - Her last day with us.



Just as we never expected her impact on us, we know that the Rainbow Bridge did not expect a new queen, but boy did they get one.  I have no doubt that she is ruling the roost with all she’s got; Storm and Decker at her side.

RIP sweet DeJa.  You were loved and loved in return.  Thank you.

Family picture 2008 with DeJa, Decker and Storm (RIP to all three of them)



Banging My Heart Against The Wall

I truly endeavour to not shine a bad light on my life.  I am blessed beyond my wildest dreams.  I have a wonderful husband who is kind, sweet, handsome and so supportive.  He still gives me butterflies when he smiles at me.  I have two smart, funny, loving and sweet boys.  I live on a beautiful peaceful acreage.  I have three beautiful and compassionate dogs who really are my best friends (no mention of our next couple days with DeJa in this blog - I just can't yet).  I have parents who I love and admire, who are there for me through thick and thin, never judging.  I have a couple close friends who know me well - very well.  I am able to volunteer when my heart calls me to.  I love my profession - yes I love accounting.  This is my life and it is beautiful and I don't ever want what I share in my blog or in person with anyone to be misconsrued as misery.

So here we go.....I am a professional when it comes to my children (as most moms are).  I know them inside and out.  Sometimes they throw me a curve ball, but I usually have them pegged.  What irks them, what makes them happy, what won't work, what I've already tried, blah blah blah.  We have been searching since Aaron was 2 (he'll be 8 in July) for an assessment that fits what he needs.  We feel strongly that he has tourettes and aspergers.  We do live with one child that has aspergers and done so much research on it, I could likely write a book.

Aaron had a psycho-educational assessment (no it does not mean he is psycho or psychotic).  Just an in depth look at what makes him tick, no tourettes pun intended.  And although it was very thorough, it didn't pinpoint the root of what is going on with him.  Yes he has tourettes, yes he is on the spectrum, but where does he fall in the spectrum???  Still no idea.  I refuse to let even a glimmer of PDD (Pervasive Developmental Disorder) hit his assessment.  It receives little to no help from most of the resources we need help from.  PDD is just a nice way to say, your kid has issues, we can't figure out what they are and really a PDD assessment puts us back to square one.  We need a clear and specific diagnosis for Aaron to get very specialized help for Aaron.  He is complex.  He is more complex than his brother who has an aspergers diagnosis.  Aaron changes constantly.  What works for him today, doesn't always work for him tomorrow.  He has a lot of anger and his mood swings are spontaneous.  He presents more asperger markers than his brother except he is social.  But he's not really social.  That's just it.  He has a friend at school that he plays with.  A friend.  His brother is more social than he is.  We go to a kids bingo and he can't handle the pressure and needs to wait in the hall, while Adam is a social butterfly.  He has learned to blend into his social settings, but when he gets home, we all pay the price for whatever socializing he has done during the day.  It's a stack of cards and all day he keeps adding to the stack and adding to the stack and when he gets home, he doesn't just knock down the stack, he burns it to the ground.  So, on one marker he is just shy of having aspergers because of the social element, so we will just say he is on the spectrum.  3 out of 4 markers, yes he has aspergers.  Just a hair shy on the 4th.  Fine for the school, fine for everyone, not fine for my child.  We need help for a child with aspergers, not a child on the spectrum, it's too vague.  The assessment isn't complete yet.  There are a couple of components that need it to be complete, and maybe it will show yet.  But I'm frustrated.  Don't get me wrong, I don't "need" both my children to have aspergers, but I do need to get them what they need.

I'm so frustrated.  We have been searching for 5 years.  I'm so tired of treading water.  I'm so tired of my son and my entire family suffering.  I can't bare the idea of waiting any longer because one checkmark was on a 4 and not a 5.  It's been an emotional day, if you can't tell already.  Sitting in a room hearing all these findings about your son is heart wrenching.  Even if you already knew everything you are being told.  The validation is painful.  Knowing we still have no concrete answer is ... I can't even explain it.  Something I will never get used to.

If I have ever told you I'm having a hard day or shared with you something about my life with my kids, please don't take that as a sign that I am unhappy.  Take it as a sign that I trust you.  Don't tell me how to fix my kids.  Don't ask if I've tried this or that.  Don't tell me I'm crazy.  Don't tell me how sweet my kids are.  Don't tell me that my children are always good for you.  Just smile and maybe give me a hug.  The truth is, that although there are many amazing things about my life - my life is hard.  It is so fucking hard.  It might not be hard forever.  But right now, it's hard.  I don't need sympathy for it, don't insult me with that, I just need the few minutes I have here or there to maybe vent, cry, scream, whatever.  Then I'm good and I can face it again.

I am the mom, the wife, the friend, the daughter, that will always give you a smile, lend an ear, make a joke, speak my mind, put myself out there.  It makes my heart happy and that is who I am to the core.

Now I'm going to vent.  Leave now if you can't handle it.  This is where the hard part comes in.
It is an impossible life when you see your child suffer every day.
It is an impossible life to hear your child say they hate themselves, to say they hate you.
It is an impossible life to explain to someone who sees your child at his best, that there is another side that is exactly opposite that he only feels safe enough to show to his family.
It is an impossible life to feel like you are helpless to your child.
It is an impossible life to fight with your child everyday.
It is an impossible life when your child can and does effectively tune you out completely.
It is an impossible life when your child says you don't love him.
It is an impossible life to hang your heart on a hook on the days where your child just needs to rage and you need to be strong.
It is an impossible life to help your child through night terrors that just don't seem to stop.
It is an impossible life to believe compliments of being a good mother when you yelled at your children moments before because they just wouldn't stop.
It is an impossible life to wait until they are asleep to cry.
It is an impossible life to fear the future for your child.
It is an impossible life to worry that your child might one day hurt themselves or you.
It is an impossible life to not be able to just kiss it better.
It is an impossible life to watch your child bang his head against the wall.
It is an impossible life to have to explain to other people why your child is acting the way he is.
It is an impossible life to be excluded from things because your child will be coming with you.
It is an impossible life to try to explain why life is harder for him but why he is so wonderfully unique.
It is an impossible life to hold your child while he cries because he can't control his stress.
It is an impossible life to be expected to be screamed at by your child for an hour and then next moment be asked for a hug by the same child.
It is an impossible life to be an advocate for your child when you are standing all alone against the world.
It is an impossible life when you can't have one day in your home that does not consist of major warfare between your children.
It is an impossible life when your child says he's stupid, even though he is gifted.

It is an impossible life when you are constantly banging your heart against the wall.

*Vent over...and yes I will still be smiling tomorrow but I'm allowed to be pissed off today.*