When Chaos Unexpectedly Enters Your Safe space

When we first made the decision to get a puppy, we thought about how amazing it would be for Jack; Jack would have a buddy, a best friend, who he would love and play with. Our family and closest friends all agreed it was an amazing decision and a puppy would be a wonderful companion for Jack. After the first week the excitement for Jack began to fade and we started to notice Jack was hitting Frank. Frank was invading Jack's space, for example; Jack is obsessed with trains, no one is allowed to touch them unless he invites you into his train world! Naturally, Frank did not understand boundaries, and attempted to play trains too, by stealing one and running away with it, to a corner to gnaw on it...and then pure rage would commence! UGH Don't get me wrong there were happier moments for Jack and Frank, they loved to run around the house like wild animals chasing each other or going on walks and chasing a ball which would cause uncontrollable laughter for Jack and it warmed our hearts. When Frank first entered our lives we felt we were up to the challenge of a puppy but as time went on we quickly realized we took on more than we could handle. I knew puppies were a lot of hard work, potty training alone almost sent me into a tail spinning nervous breakdown. As a parent of an autistic child who I already give 120% to, adding a puppy only added more stress and even less time for myself. Don't misunderstand, I love this little fella with all my heart but the chaos that came with him became unbearable. I started to watch behaviors come out of son that I hadn't seen in over a year, and with a vengeance for that matter. The throwing, hitting, biting, and screaming was mind blowing and exhausting. Add to that a puppy who Jack loved and hated, and all hell was breaking loose! If Frank was bothering him I'd put Frank in the crate to settle him down but that too caused meltdowns, Jack didn't want Frank in the crate or near him all at the same time. Imagine that! Every day was a constant struggle, a constant battle that was I losing. Initially, I could not figure out why Jack's behaviors were spiking, one Saturday he went into time out 20 times, no exaggeration it was that bad, and many of those times involved poor Frank who took the brunt of Jack's increasing anger. As his bad behaviors started to increase they also started to follow him places they'd never been before, like my parents house. These off the chart behaviors we're happening with my mom, a person who generally gets the pure angel side of Jack. "School" aka ABA Therapy started to notice a spike in behaviors as well. So when the chaos finally hit fan, I realized I had lost control in our safe space, I was yelling at Jack, yelling at the dog; who absolutely refused to stay off the couch, and I officially felt like I was on crazy pills. The stress and anxiety levels my husband and I were feeling were now also off the charts. I know just how difficult my son can be, I thought I had seen it all, I was wrong! It can be much much more difficult and horrible. We had all moved way past our breaking points. 

Frank is a gorgeous puppy and so so smart but also extremely wild! My mom raised a puppy and even she said she'd never experienced the wildness quite like this. These "boys" fueled each other into a frenzy! He is a good boy in puppy standards, he just needs constant attention, affection and playtime, time I don't have but tried to give. If I had won the lottery like I was supposed to, I would have invested in more proper training for Frank, but not only does training cost money it also requires more time. Anyone in our situation knows time is one thing we don't have much of. No longer was my son getting 120% of my attention, I had to share it with Frank, who doesn't understand time out, but he did his best to play on his own when I could not play tug of war. My son's behaviors began to spike because half of my attention was given to our puppy, and we quickly realized that for Jack and his needs, this was unacceptable. I feel like a failure on every level, from my husband, to our son, and to our fur baby, I was exhausted and stressed all time and I felt like I had lost all control. We just didn't see this coming, we had no idea whatsoever that this would ultimately change Jack for the worse and the impact it would have on him or how quickly it would affect not only our immediately family, but others who helped us take care of him.

It's heartbreaking to say the least, I am devastated and have been crying for days. Crying over the loss of a family member, whose sweet face I can't erase from my mind. Crying because my son asks me every day, several times a day "where's Frank", "is Frank home"; truly the most devastating questions I think I've ever heard. He knows he has gone to a new home, we tell him we will visit him in time and so far he doesn't appear to be sad about it. However, I have no idea if at 4 years old, he really understands Frank is gone...forever. As sad as I am, I feel more sad for my son who doesn't really know what happen to Frank or where he went or even why. And for sweet Frank, I was his mommy his everything and poof it happened so fast does he think I'll be back like last time, and I'm sure he doesn't actually miss me but what if he does? On that note, we did find him an amazing home with our dear friends' son, who has nothing but time and love to give to Frank. Frank's life with us was unfair for him, and I know that now, this is the right thing to do for all of us. I know in my heart we had to do what is best for our son's well being, it doesn't make it any easier though, Frank was only with us for a short time but it felt like a lifetime. I wish we could wait it out, wait for Frank to become the amazing companion I know he would be for Jack, waiting for Jack to grow out of this phase of crazy, unfortunately that may require our house burning down first.  

So on a positive note, or not, but really, Frank has been away for five days and already I am seeing my son return to me, our house feels calmer.  We are picking up the pieces from our little tornado Frank, who I can't stop waiting for by the freezer every time I open it, to come begging for an ice chip. So time will tell if we made the right decision. Who knows maybe five, six years from now we may try again, but definitely not a puppy, an older calmer dog!

And dog lovers please don't misunderstand, we don't blame Frank, he's a puppy, we blame ourselves. Jack wasn't ready for a companion, and he's emotionally not ready for his space to be invaded. We didn't see the impact this dog would have on him, if Frank were a gold fish he'd most certainly be dead already! Just sayin!! (Insert sarcasm font)

As a side note, I apologize for the back to back heartbreak posts, unfortunately life isn't always as we planned, I write my life as I live it, honest occasionally brutal but always from the heart. This current life lesson is for anyone considering the addition of a puppy to the family, if your child has aggressive traits that so many of our autistic children have, I hope this helps you to see the other side, the side you most likely won't see coming. For me personally, I envisioned an amazing therapeutic addition to our son's life, it was anything but that, apparently that costs money, lots and lots and lots of money! I am certain not every one's story will end the same way by adding a puppy to the mix, just hoping our journey's purpose will serve as some good food for thought before you add a little chaos to your safe space!

Hugs from a fellow Warrior

Em xoxo

Forever in our Hearts!
 We will love you and miss you always, sweet Frank!  

The Dark Side of Autism

The Harsh Reality of Autism, it's not pretty and some days it's beyond difficult. It can be depressing and heartbreakingly sad. Today I'm sharing the difficult reality that I live in daily. I generally like to keep it positive and pretty, sharing our small victories and progress, but some days I think people don't realize what it's truly like to be an autism parent.  Imagine this boy not strapped in a car seat and you are trying to get him dressed, or in the bath or in bed, this is my reality almost daily. Meltdowns are nothing like tantrums, when I tell people about Jack having one, they feel they can relate because they have children the same age or remember they're own child at Jack's age. While I appreciate that people want to relate, I can almost assure you that they cannot. Today I am giving a glimpse to the other side of our rose colored progress filled life, for the sake of spreading awareness and understanding of the dark side of autism, the moments you most likely never see. For my fellow autism parents I want you to know you are not alone, even though you may feel like it often. God gives me strength to get through these moments, even if in the moment, it feels like I have none.  There are days I wonder if this type of behavior is our forever life, although I don't know the answer to that, I pray unceasingly that it will end some day, preferable before he is big enough to cause real harm to himself or others. Many people face this dangerous aggressive behavior daily with older children, I read so many stories about they're struggles with it. I remain optimistic that this too shall pass, with a touch of fear it may not. That's my reality, like so many other autism families, the struggle is real, the worry is real. We continue the therapies day in and day out waiting for something to click in our children. We try everything, probiotics, prebiotics, CBD oils, iron, magnesium, gluten free dairy free diets, biomedical therapies,  you name it the community is trying it, all in an attempt to correct something that's wrong and affecting our child's behavior, looking for some peace. I have yet to find my answers, personally I am a  skeptic of all of it, because I know my son's behaviors are directly affected by his chromosome syndrome.  Believe it all not, not all children with autism have been genetically tested. Although, some claim that various versions of this list have helped them. What I do know is that I am a warrior and I will never stop being a warrior for my son no matter how painful, sad, or how beautiful and amazing it can be. 

This meltdown lasted almost 30mins (the entire way home) and has continued for the last two hours on and off. It all started because he didn't want to come home with me and he was trying to get out of his seat and ultimately out of the car. 

Hugs From A Fellow Momma Warrior

Xoxo

Mommy Instincts vs. Everybody Else

Mommy Instincts: We all have them, sorry dads but its a mom thing; but sometimes we forget to hone into them, especially when dealing with doctors. When Jack was first diagnosed with his Chromosome syndrome, I didn't realize right away that we were kind of blown off with regards to the impact it could have on Jack. I mean yes other than behavior, sleep and autism he was not presenting any other symptoms, however looking back it was like "Yep case closed cognitive delays will be his issue, diagnose him with moderate autism to cover our ass!" At least that's how I felt! So ya, in one year's time Jack has gone from moderate to high functioning, he has thrived in speech, and has perfect comprehension and cognitive abilities. He's keeping his BC on her toes, as she has to constantly write new ABA therapy programs, as he masters them in record time!  I knew back then he was not moderately autistic, I saw what he could do at home and I also knew he was extremely stubborn, so getting him to comply during a five hour test wasn't going to go well. 

So here we are a year plus later and I decided to push for a full medical work up on Jack. Our current Pediatrician is great, the minute I mentioned it she was on board. Personally, I feel I need to know for my own peace of mind, not to mention some of the horror stories I have read from various mom's on FaceBook support site Chromosome 17q12 Support Group. Stories about their child's heart condition that would have never been caught at a wellness check, had they not pursued the cardiologist on their own. So here's what we know so far, renal is all good and so is his heart. Phew. After some blood work, Jack does have Iron deficiency, not shocking since he's a typical autistic carb loader who screams at the site of anything vegetable or meat.  So the recommendation was 50mg/day for 3-4 months and then recheck. From day one Jack did not tolerate the iron...those are my mommy instincts speaking. Jack started vomiting which was followed by diarrhea for four days and then one more vomit on the fourth day, The next morning I did not give him the iron and wow no illness, weird. Sounds like a stomach bug right? Ok, ya, sure he had no fever though, and he seemed absolutely fine accept for the obvious, but ok Doc!  After a week off, I started the Iron again, even slower, smaller doses than before, the day we hit 30mg of iron poof vomiting followed by diarrhea, again no fever, and I stopped the iron. Third time's a charm right, yep same results 30mg and poof vomiting etc.  Today I went internet hunting wrote everything down on paper and hit the doctor's office. Finally they agreed somethings up, its rare (our favorite family word cause that's how we roll in this house) but possible she said!

The point of this story is mommy instincts are no joke, they are a real God given talent and for good reason. Whether its a doctor, a teacher, a BC, BA or an IEP...if you feel something isn't right don't stand down with the attitude that "they are the professionals so they must know best" kind of thinking! When we were first diagnosed in November 2015, I was drowning in this autism world, clueless on the where and how to even get this so called ball I was supposed to get rolling. I had to do all the research and make all the phone calls on my own. In the beginning, I went along with the plans laid out before me, thinking that the gut feeling I was having was merely worry and fear of the unknown...till it wasn't! And certain things didn't feel right, certain people working with my son didn't feel right. To this day, his so called one and done seizure that doctors told me were from his GERD (severe acid reflux) was actually caused by the abrupt stopping and starting of medications causing a shock to his system...but what do I know those are just my mommy instincts talking. If it was GERD then why only one seizure when my son actually suffered with GERD until he was a little over 18mos...Weird right? Mommy Instincts go with them, listen and act! I see so many other moms lost and asking for advice on various support sites, with comments like "I'm not sure I like the therapist and I hate to make waves and the IEP meeting at school didn't go the way I thought it would" etc. etc.  If you don't like your child's BC for ABA Therapy, swap em' out, don't be afraid of confrontation, short and sweet, "I would like to know if we could get another BC for my child, its not a good fit..." Boom, Done! Just because the doctor thinks one way doesn't always mean they are right. Follow your mommy instincts. We are advocates for our little people, and not one autistic child is the same, we are not one sizes fits all.

Hugs From A Fellow Warrior
xoxo

Grief is Real, and You are Not Alone

I wanted to share a very real, very incredible fellow momma warrior's video about losing and finding hope and grieving the loss of a child that you dreamt about before you met. Yes, I hear you, it sounds crazy and already you want to pass judgment on what kind of mothers we are.  However, what you will actually see is a mother who had huge dreams for her son when he was just a sparkle in her eye and now has new dreams for the son she received. If you do not have a child with Autism or some other disability, you may never understand what its like to grieve the loss of a child who is standing right in front of you.  

I personally went through at least the first 2 stages and I am probably consistently lingering somewhere between 4 and 5 now. The five stages of grief are denial, anger, bargaining, depression and acceptance. Denial right out of the gate, which even today I regress once in awhile when we go 5 to 6 days without a meltdown, "Maybe he isn't Autistic, he is just incredibly stubborn" and then reality sets in and back to acceptance I go. And anger, phew that was a rough one and again I still go there too! "Why me God, why didn't I get the normal baby I prayed for my entire life, it's so difficult and I am angry, I am so damn angry my son isn't "normal",I cannot do this!!"  "Yes you can whispers my inner voice Yes you can!" and back to number 5 once again.  You see my whole life I wanted a baby, and after a year and a half of trying and fertility that dream became a reality. I was on top of the world...well mostly pregnancy was not all glowy and rainbows, I was a straight up hormonal crazy person who never actually felt good. But the excitement of that baby to come, I was in love and the dreams of what my child would be like, I pretty much envisioned our entire lives together from birth to grandchildren.  And the day I heard the news, my heart sank, fear took over and my dreams were shattered into a million pieces at me feet. However like the the momma in this video you start to have new dreams new hopes, different from what you thought you'd have, still wonderfully amazing just different.

With that being said, my son is now on the high functioning side of the spectrum, a place I did not know we would be at on day one or even day 250.  But today I see now that all my dreams were not shattered, I'll tell you what he has an left arm, woo wee, I see mounds and diamonds in his future, First Autistic Left Handed Pitcher here we come! LOL  There may be parts of Jack's life I may never see that I once dreamed of for him. I don't know what the future holds. My dreams for my son are alive and well, even today a dream has come true, today Jack ate a multi-vitamin, an actual chewable chalky slightly sour multi-vitamin...Living the dream right there! I have been preaching it all week...It's the little victories that count now, every single one of them! Find those in your own child and your dreams will reignite! So while I may not know this Momma warriors pain as she feels it  and what she has been through her video is amazing and relatable, and I wanted to share it in the hopes of someone like myself, like her who are struggling with their own feelings. 

For my fellow warriors, whose child is on the moderate or severe side of the spectrum, I see you, I see your pain and I know your grief, you are not alone, you are not an evil shell of a mother for your feelings of grief. What saddens me the most is that some mothers criticized this warrior, because she was honest and real. Mother shaming, parent shaming it has got to stop! It's so out of control! Regardless if you have a child with disabilities or a neuro-typical child or a nerdy child, let's stop shaming of fellow parents who are doing their best and trying to share their journey. Just because I or any mother for that matter, throw a quick truth bomb out there doesn't mean we have opened the floodgates for the haters, if you don't like what I have to say then move on you don't have to listen to me or read what I write. Let's get back to the roots of our Grandparents, whose motto was "If you don't have something nice to say than keep your damn mouth shut." Oh my bad, that's my Grandma, yours may not have used "damn", but you get the the point! 

Be kind fellow momma warriors! 

Em xoxo

https://www.facebook.com/findingcoopersvoice/videos/825126204296509/

I Am In Awe of the Progress

Oh Hi There! It's been too long and I apologize! Most of my followers are family and friends, so you know what a year we've had, to sum it up this past year has been...well...crazy! We put our house on the market in January, and within four days it was sold. We searched endlessly trying to find a new home, and ended up a mile down the road. Jack started ABA therapy in February and we moved into our new house in the beginning of April; a transition I was so worried about for Jack, leaving his place of comfort. However, like many of the surprises he gives me daily, he didn't even blink an eye when we moved into what he calls "Sweet House". Not only did he handle it well, he also transitioned himself out of the crib and into the big boy bed, the same day we moved! It really was overwhelming for me and he did it all in stride. With only two months to get the house organized and ready, Jack's third Birthday came and went, summer flew by, the holidays were a blur and so here we are!

Jack is about to complete his first year of ABA Therapy, he now goes 5 days a week for 5 hours a day. The progress is nothing short of amazing. One of the biggest concerns with 17q12 microduplication is cognitive delays or learning disabilities, as of this moment this is definitely not a one of Jack's issues. He is progressing so quickly, that he is keeping his therapist on her toes, and she is constantly writing new programs for him to master. In less than a year Jack's diagnosis has gone from moderately autistic to high functioning. Although there are other children who are on the spectrum and have the same chromosome duplication, I recently re-read the related issues of someone with 17q12 duplication. Behavior issues; such as defiant, uncooperative, extremely demanding, Speech and Language delays, and Sleep problems are all common characteristics of 17q12, and it became clear to me that his chromosome duplication is the direct cause of his autism. Recently, I thought he doesn't have autism he is so going to "outgrow" of this, um ya no he's not, it is chromosome issue. However, its ok, because what is happening, is that he is being given that skills to cope with his behaviors, and his language was delayed not impaired and the behavior consultants are helping him learn to speak and understand how to use language. This video is the progress he has made in a year and a half...

Pretty amazing right! Although I loved his sweet little "foreign" language, it was also heartbreaking when he would tell me a 3 minute story and I could only understand 5-6 words at 2 and 1/2 years old.

We still experience a lot of behaviors but I feel like the are just more age appropriate behaviors compared to the 25 minute meltdowns 5-6 times a day, that we used to have. Although on occasion those long duration meltdowns do creep in, its maybe once a week or even less. And his behaviors at the center have decreased down to 10 minutes a day out of 5 hours and we even see days with zero behaviors.  They are also working on his food issues.  At an astounding 55lbs and 42" tall, its obvious Jack is a solid boy, but his all carb diet has me worried, especially since diabetes can be a trait with 17q12. So the center works on getting him to eat different foods, so far he is eating an apple and they just started working on carrots.  It's amazing how this therapy works. Throughout ABA therapy practices, the main constant is "do this and you can have this" so for example "take a bite of this carrot and then you can have a bite of the pizza". The behaviors can be anywhere from refusal to a full blown meltdown, and carrots and pizza flying across the room. But in a matter of 2 weeks he now eats 3-4 carrots at lunch time!

We also decided not to put Jack in preschool this year, one because in September he really wasn't ready and two ABA therapy is like a preschool with intense one on one learning, so why would we interrupt that for preschool where its 20 to 1. Our goal is to start him in the fall.

So yes Progress, I am in Awe of the Progress! It's been an incredible year. There are so many hilarious stories to share, like the "Toddlers, the Art of Swearing", and "Bubbles...I want you, just kidding, get away from me".  But I will save these for another time, and I promise it won't be so long this time! Until then...

Hugs from a Fellow Momma Warrior!
Em xoxo