Reflections from the front seat of the roller coaster

  The new year is in full swing, our Christmas holidays came to an end yesterday with the appearance of a few of my son's workers coming to the house to set up special services at home, ( they are fantastic so it wasn't a horrible time just a reminder that our down time is done and that crazy town will be starting back up again plus it gave a small glimpse of what is to come in a few days) and in two days we will be fighting the back to school battle of wills and meltdowns, oh the joy and sorrows of breaks, love them while they are happening, hate them the first week back to reality. My kids do awesome on holidays and I know this is a rare thing in autism houses so I do cherish this fact and consider this a huge win in our lives, but that transition back to school and therapy is like a hurricane, you can see it brewing, you know it's coming and the strength it is building up, you can brace yourself for the impact, get out your tool box, nail those shutters in place, and batten down the hatches hoping and praying for the best, but once those clouds open up, watch out you are assaulted with gail force screams and flood gates of tears. If your lucky the storm passes quickly, and things get back to their “normal” calm, if your not lucky that sucker hangs over head for days, sometimes, even leaving only to circle back in for another attack. I can see the storm brewing, the last couple of days, “how many more days until we have to go back to school ?”, “I don't want to go back to school!”, and then yesterday a brief over view of what is to come on Monday, big guy Ben started screaming and stomping the minute the first worker knocked on the door, it ended quick enough once he realized that they were not there for him and that he was allowed to continue to watch his t.v show, (yes I do use t.v. as a babysitter and for rewards, judgey judges go ahead and slam me it's all good I have thick skin ;-) ) but that tiny little storm is nothing compared to what's about to hit landfall. Bring it on, I have cute rain boots and a pretty raincoat, and my cellar is stocked with chocolate and booze. This is not our first storm, we will weather this the best we can and come out of it dancing in the rain and looking for rainbows.

  With the hurricane of back to school brewing and our family time coming to an end I am looking back at our past year and man what a year it was, a real roller coaster of ups and downs. A third autism diagnosis, some very serious self injurious behaviour, PICA traits and chewing on electrical cords, hospital visits and testing and broken noses and knocked out teeth, and enough tears to fill an ocean. Then the realization that we needed to make a big change in order to get our kiddo's the help that they needed and deserved, the good fortune to have the right people pulling for us to help make the changes that we needed to for our family. I can not thank those people enough for all of the help and support that they provided to us during what was probably one of the most difficult times in our lives, thank you just doesn't seem like a big enough word for how we feel, because of their support and help we were able to make the changes that were needed and it has truly been life changing for us. We moved our family across the country on the threads of hope that we would be able to get even a smidgen more help than what we were getting at our past posting, the research that went into our decision was pages and pages of information. Literally I have a file folder full of info that was put together to present to my husbands chain of command, luckily we didn't need to go that route and our posting went very smoothly thanks again to that amazing group of people that took it upon themselves to really care about us and went out of their way to help us in our time of need. I am so overwhelmed and still in awe of the services and help that we have gotten here. This special needs community has opened up their arms to my family, the workers, doctor's and therapists have been incredibly welcoming, they have gone above and beyond to ensure that our transition has gone as smoothly as possible, they have been fantastic at providing support and information and setting up programming and services, we left behind some of the most amazing therapists, teachers and workers and I do miss them, when you are working so closely with people you form a bond with them, they will always be remembered and thought of as friends for my family, so finding workers here that have been so welcoming and that show such care for my kids has been a real blessing for us. We ended the year with some incredible changes for big guy Ben some words, and some huge developments for him, even keeping some clothes on and saying a few words, Lady Grace is excelling in her school work and has a fantastic worker that is helping to keep her on track, we are working on a few different things to get her the help that she needs, G-man has formed some friendships and loves our new house, we are still figuring out the school thing with him as he's been a bit of a challenge and the transition to the new school was by far the hardest on him, but we are fingers crossed getting things back on track.

  We are going into this new year, with a full line up of therapy, appointments and services. A referral has been put in for a full assessment for the Remi bot and the clinical psychologist and doctor are wanting it bumped to the top of the pile, yes you heard it here first they want to take a closer look at the little mans quirks and get to the bottom of his not talking, I'm surprisingly not even fazed by this one, what's another diagnosis in this ausome house of ours! Thankfully I have a pretty calendar and organisation system to keep things going smoothly, because crazy town is coming.

Well that's me for today reflecting on this crazy roller coaster ride we call life and sorting through the puzzle pieces one day at a time.

J  

Mommy's Unite- We all Rock !!

I am lucky to have four amazing kids call me mommy.  Being a mother can not be explained the intensity of your feelings and emotions can only be felt, it starts when you first find out you are pregnant the feeling of knowing you are no longer one, that you are creating another life, the reality is overwhelming when you see the first ultra sound and that little peanut on the screen, hearing the first heartbeat and the first little flutters, it is exciting and scary all at the same time,  Being a mom means that you are no longer responsible for just your life but the life of someone else as well, it brings with it challenges, doubts, confusion and most importantly incredible rewards.   I love my mom she is a true role model and the person I go to when I need to vent, to share joy and to help with problem solving she is always there even if she may not agree with my decisions she supports me and loves me unconditionally ( which at times must have been incredibly difficult considering how much of an attitude I have).  Until I had children of my own I did not understand the intensity of her love for me, how even after I left home and was married and starting my own family, how she continues to worry about me, how she will continue to worry about me always.   When I pictured my life and what kind of mom I was going to be I could not have imagined the reality of what it actually means to be a mom, Before we have kids we have a certain image in our minds, we think we will be so much better than other moms and that our kids will be the first ever kids in the history of the world to listen, and not talk back, and they absolutely will not throw a temper tantrum in a public place. ;) ok maybe that was just me dreaming, then we become mothers and the rose coloured glasses come off and the reality sets in and it’s no where near as glamorous as the dream. To often in life we judge other moms choices and their parenting styles and we forget that each child is different each mother is different and we all face our own unique challenges, We need to embrace the differences and take joy in the things that only a mother can relate to.  There are some things that are universal about being a mom.  

• We all go through life not having a clue what we are doing, we learn as we go and adjust according to what life throws at us, and just when we think we’ve got it all figured out it goes and changes on us. We are not experts we will make mistakes and we will sometimes regret a decision we have made, but we go on and we become better moms and people because of it.
• We all eventually end up quoting our mothers, and will at some point in time apologize and thank our mothers for all of their hard work and for what little brats we must have been.
• We learn just how valuable and precious time is, once you have a child time will never seem the same again, they grow so quick and can change so much in such a short time.  It all seems long when we are sleep deprived and walking the floors but then we blink and they are off to kindergarten and just like that we have passed into a new stage in life.  
• You have never before felt so much joy at someone else's accomplishments or pain at their struggles.  We cherish the good and painfully feel their failures.
• You will never again make a decision without thinking of how it will impact your family. NEVER !! From having to figure out babysitting, to planning vacations, to the simple and mundane act of grocery shopping.
• We can not do it all , something has to give, you can not work full time either at home or out of the home, keep a house clean, give your kids and husbands the attention they need and still find time for yourself.  We always feel like we are dropping the ball on something, and that at any moment the careful balancing act we have created is going to come crashing down, at some point we all feel like we can not keep up.
• We all yell and lose your shit, it’s just a fact of life, no matter how many parenting books you read or how determined you are to raise a child in a calming environment, without raising your voice or losing your mind,  You will one day full out from the bottom of your gut do a mommy roar, it may be because of safety issues, or the fact that you have just listened to two kids fighting in the back seat over something as silly as a pack of stickers and just wanted it to stop ( yah that may be a true story)    it’s ok it doesn’t make you a bad parent it makes you human,  take a breath and move on.
• We all CRY, Take stock in tissues one thing is guaranteed when you're a mom you cry over everything, from the minute they first enter the world to their first boo boo, when they first start daycare, then kindergarten then college, get married and have kids of their own we cry.
• We never stop being a mom :)  We will always from this day forward walk around with a part of us out there, and our love will always follow them no matter where they may be.

Thats me for today puzzling through life, in love with my kids and being a mom, and thanking all moms for everything that they do on this day and always.

J.

How being an autism mom prepares us for a career as a combat soldier

It is said that autism mom’s have stress similar to that of a combat soldier.  You can read the article here http://www.disabilityscoop.com/2009/11/10/autism-moms-stress/6121/. and further study on the subject here http://aging.wisc.edu/research/affil.php?Ident=60 .  Well considering I am married to a combat soldier and have several children on the spectrum I would imagine it is a safe bet to say my stress levels are probably through the roof.  I thought it would be fun to see just how similar us autism moms are to combat soldiers and show my husband that I might be able to do his job. ;-)    

• We are used to working on little to no sleep for long periods of time.
• Once our kids are sleeping we deploy stealth like tactics to navigate around our own houses
• We are both proficient in the use of acronyms and abbreviations
• We have the ability to tune out everything but still hear everything.
• We are proficient in hand to hand combat and can disarm our opponent in seconds
• We are used to dangerous objects being aimed with great accuracy or sheer luck at our head and or body.  
• We are capable of carrying on even after being injured on the job ( see last point)  
• We know all about the hurry up to wait process it’s now just a fact of life for us.
• We have signed our name on so many government documents that we have lost track and are capable of reciting long numbers on cue.
• We are capable of being packed and out the door with almost no notice ( if that specialist you’ve been waiting to see for a year calls with a cancellation )
• We have been conditioned in the art of not panicking and being able to remain calm under duress or at least faking it till we can find a safe spot to curse, cry and drink in no particular order.
• We are professionals in the art of reconnaissance and scoping out enemy territory, and quite often make social stories around this topic that are repeated over and over and over again.
• We are constantly on the look out for threats or things that may cause an explosion.
• We are prepared to take action at the first signs of danger or threat to safety, and often times surprise ourselves on just how quick we can react when need be.

   

And last but not least

• Both of our jobs are extremely stressful, but also extremely rewarding.

There is no way around it being the mother of a special needs child is stressful,  from maintaining schedules and keeping up with therapy and specialist appointments to the day to day stress of raising a child with autism, but we do it, because we have to, we have no choice, they are our children and though stressful and challenging it is also rewarding and we love them unconditionally.  Stay tuned for part two of this article on how to deal with the stresses of being the mother to a special needs child coming in the next few days.

***** Disclaimer---Yes I know that being a combat soldier and the mother to a child with autism are totally not the same thing so before anyone sends me hate mail let me just say I respect our soldiers and stand behind them 100%, I can not even imagine the things that they must go through and as I am the wife to a combat soldier I can say that I know how hard my husband works I see how much these soldiers sacrifice being away from loved ones for long periods of time, training in less than desirable conditions and going to places that no one else wants to be near.  I support our troops and would not want to do their job, unless of course they changed the uniforms to a pretty pink and added a bit of lace and jewels then maybe.... ;-)

That’s me for today living life one puzzle piece at a time and loving my combat soldier while dealing with the stresses on the home front.

J.

Autism Awareness month ends with Thanks

April has come to a close and autism awareness month has ended, for many of us autism awareness does not end in April, it lives on in the homes of every family with a child on the spectrum, with every friend and family member that provides support and with every caring person that works with a child or individual on the spectrum.   I have had the honour of working with some amazingly dedicated mom’s and support workers and was lucky to have recently worked with some incredible people in helping to spread some awareness within the schools and communities and to fundraise so that we can continue to provide support and fantastic opportunities for the local families in our area that are affected by autism.  The support was overwhelming and the awareness and acceptance that was created I know will be remembered long after awareness month.    I can not express my thanks enough to all of those that took the time to help to support a cause near and dear to my heart and to all of those that continue to show such dedication and determination while working with and raising children on the spectrum.  I’d like to share some of the amazing awareness that was raised

Autism is just that a spectrum, if you know one child with autism you know one child with autism!   Lucky for me I know a lot of children with autism and have had the privilege of watching them grow and develop I have shared in their families excitement when they have mastered a hard to grasp skill and shown joy at all of those little things that other people take for granted.  Each child on the spectrum is unique, they all face their own challenges and each one has their own personality and their own set of strengths.

Each family has their own puzzling path to navigate through and though we all travel a different path it is still within the same forest and the terrain is similar and when our paths cross we are able to share our experiences. I am honoured to be able to help other parents to navigate the confusing and often overwhelming process of a diagnosis and raising a child with special needs, to be able to offer support and a safe place for them to go whether that be a shoulder to cry on,  a sounding board to vent to or another mom to share concerns or ideas with.   I have never met a more dedicated or fierce group of individuals then the autism momma bears that I am privileged to call friends, brought together by a common cause and  strong desire to give our children the very best that we can possibly give them.

 I am privileged to have worked with some incredibly dedicated individuals that go above and beyond to help out my kids and that have opened their hearts to my family.

 I wanted to end Autism awareness month by honouring those moms that work so hard every day to provide the best for their kids, the workers that go above and beyond, the family and friends that are always there,  and to the amazing kids that live it every day.  You are all rock stars and deserve to be recognized for all of the work that you do.  Thank you from the bottom of my heart.

That’s me for today ending Autism Awareness month with thanks to those that know that autism is so much more than a diagnosis and that continue to live, love and laugh through this incredibly puzzling journey.  

J.