Hard to believe

I don't understand something........why do people fake a child's ASD diagnosis (or any other dx for that matter)? I would happily give up my life with Sammy for a day if they could truly experience all the bad that goes with ASD and epilepsy. A day where a meltdown precedes a cycle of 7-10 seizures (complete with loss of bladder control), stimming with voice and body, refusal to eat anything but chips or cheese sticks, and a call from the bathroom to come wipe his rear end.

Don't get me wrong, I love my child the way he is. I'm weird in that I take heart in the matter that at nine years old he still needs me to help him get dressed, that he wants to snuggle with me at night, and that he tells me I'm the best mom ever because I let him have a grilled cheese when the family is eating spaghetti.

2014 has been a hellatious year for my family. If I wasn't living it, I'd say it was all a lie. There are days when I *wish* it was a lie. That I could just tell everyone "just kidding" and move on from it all. From continuing to reel from the loss of my dad in October 2013 to losing my grandma in September 2014, from a rare cancer diagnosis to several hospitalizations for a new epilepsy diagnosis, it's just been super hard. (financially, my life is a disaster)

I just don't understand why someone would lie about it when the people living it wish it wasn't true.

Let him be a kid

This is my favorite piece of advice......NOT!  I would love to just let Sammy be a kid. Unfortunately, there are things to consider.

At nine, I stayed home from school alone. I participated in sleep-away camp. I rode my bike around my neighborhood. I played in a room separate from my parents at parties. I helped watch younger cousins. My parents had a lock on their door and used it. (totally a foreign concept then, standard now)

These are things that Sammy can't do (yet). He can't be left alone. It's highly unlikely he'll ever be away overnight without a family member. He doesn't have the coordination to ride a bike. Saturday at a party, he was with the other kids and had a seizure, no one came to get us......not even Henry (I think he was too busy playing.....we happened to hear another child crying). Sammy would rather PLAY with the younger kids because he's on their level.  He may like shows like Johnny Test, Casper, and Wild Kratts, but he also likes Teletubbies, Sesame Street, and Pajanimals.  Sammy sleeps right with me every night. Can't tell you how many times I've woken up to be peed on during  a seizure. My bed is now triple sheeted with waterproof pads between.

I would love to sign him up for group sports, after school care, or other activities. And yes, I understand there's a need for him to be a normal kid.  But he's not normal.  He's Sammy normal, just not society's version of nine year old normal.

Ultimately, it's not the random friend or close family member that is responsible for his welfare, we are. There are worse things you can call me than "overprotective" or "sheltering" and I'm glad that there are. In the end, Sammy will be safe.

Sybil will give Sammy some of his independence back, especially sleeping in his own bed/room. He'll be able to walk more steadily. He won't be alone at home or in public.

Hopes and dreams..........

It's always hard to have hopes and dreams for your special needs child. You never know what is appropriate. You don't want to encourage dreams that are well beyond their reach, but you want them to aspire to be something more than just a living organism.

It's only been recently that I've started thinking about what Sammy can and can't do against his peers in terms of life goals  He talks about marrying his best friend and having a life. Of course he plans to live with us for the rest of his life.

I've continued to watch Henry "catch up" to him, and recently, he's started to surpass him mentally and academically.  This is the hard part of having your special needs child first. I'm not saying it's harder, I watched my sister go through having her Autistic son second. It's just different from my perspective.  You don't notice just how far behind their peers they are at the older stages.

Sure, he wasn't talking in phrases at 3-4 years of age. He wasn't potty-trained until almost five. Heck, he had a paci until 4 years 10 months and I remember the day clearly he finally lost the last one. But it's not until you start putting Sammy with other 9-10 year olds that you really realize how far behind them he is and how he just isn't going to catch up to them.

Sammy's IQ has dropped due to his seizures. We don't know if it's permanent, my hope is that he will regain what he's lost.

I don't like having to be careful with my encouragement. I don't like asking my five year old to wait for me to help him because his brother can't do things his age peers can do on their own.

My hopes and dreams from the moment I found out I was pregnant with Sammy have changed so drastically, I no longer know what they are.

"I'm getting HUNGRY!"

Probably the most popular phrase heard out of Sammy's mouth. And it doesn't matter if he's just eaten and walked away from the table saying he was full. Within 5-10 minutes he's "hungry" again and means it.

Reason #1: the medications he's on. Sammy takes three different epilepsy medications on a daily basis. One of them, Onfi, is known to slow down the metabolism. He's eating out of boredom and gaining weight. He's gained 35-40 pounds since his diagnosis.  My little peanut who was borderline failure to thrive now outweighs many kids his age and older. He's gone from a solid size 8 to a 10/12 husky.

Reason #2: he forgets he eats. The seizures have taken a toll on Sammy mentally and physically. His short term memory is completely shot. He doesn't remember doing things, including having a meal. I spend A LOT of time reminding him of the meal we just ate. Did you see the movie "50 First Dates"?  My life is like that in many ways. He truly forgets and it SUCKS.

Are service dogs REALLY that expensive?

Many people's mouths just drop when I tell them Sybil cost $11,000. They don't understand how a dog can be so expensive, until you actually spell it all out.

I'll start by reminding you that Sammy is autistic, epileptic, intellectually disabled, and has a genetic abnormality as well as a brain malformation. Sybil is not a pet, she is a working dog that will be with us as long as we need her. Our goal is to be in a different place so that when she is ready to retire, we will be able to keep her as well as a new service dog.  But that is YEARS down the line.

Sybil will come to us at 14 months of age. Consider first that it means 14 months of boarding and vet care, including spaying. It also includes her flight from her breeder, Sandy with Sho-Me Labradors of St. James, Missouri to the trainer Jason at Canines 4 Hope in Palm City, Florida. We specifically looked for a Florida-based trainer because we didn't want to have to travel with Sammy (who shouldn't fly).  We also wanted someone close enough that was a day trip for us.

Sure you can rescue a dog from the shelter and train them commands, but truth is they still have an unknown history. Service dogs are chosen from puppyhood based on their nature and ability to follow commands. It also requires them to be able to ignore distractions from people (petting, calling, staring) or other animals (cats, dogs, squirrels).

Sybil will have had a few months of basic training with Sandy, including manners. She will soon be flying to Palm City to begin four full months of intense training with Jason.  We'll go and visit her for training. I'm actually grateful things were a bit delayed so we'll have some holiday breaks to go down and see her overnight.

Canines 4 Hope is at the lower end of cost. Many organizations require you (as the family) to fund-raise $14,000 or more and there's a serious wait list for those "free" dogs.

We have secured more than half of Sybil's cost via private donations and selling "A Friend For Sammy" bracelets which have been sent all over the country. We also secured two grants from epilepsy foundations.

Many organizations aren't equipped to dual train a dog for someone like Sammy. Some won't take children at all, and some have strict guidelines and deadlines for acceptance. I had a lot of friends helping research different places, but ultimately, I'd dig in and find something that bothered me in the FAQ or the actual application. Even today, I found an organization that states "XYZ maintains ownership of the dog"  I have a HUGE problem with that.

Jason understands what we go through as parents, he has a son with epilepsy as well. This was a huge factor in our decision. We were working with a PERSON, not an organization.

He also understood our timeline for Sammy. When we first met with Jason in June, I had already had four in-patient chemo sessions and Sammy had been hospitalized twice for uncontrolled seizures. Fund-raising in the traditional sense wasn't going to happen.

Yes, service dogs are really that expensive.  And given Sybil can do so many things for Sammy at home, school and out in public, I think she's worth it.

If Sammy wasn't living it........

I wouldn't believe it.  My dad, Sammy's beloved Papa, died in October 2013. It was hard on everyone and I'm grateful that I took the boys back to Michigan to see him in July.

Four months later things sort of hit the fan. I'm serious when I tell you I think friends and strangers sit back and say, "I call bullshit. All this can't happen to one person."  I assure you it has and can show you my EOB's from health insurance, photos from hospitalizations and the bills that continue to pile up.

Here's a time line

• Feb 13: I had a biopsy
• Feb 19: Sammy had his first gran mal seizure EVER
• Feb 25: I received my diagnosis of rhabdomyosarcoma and had a CT scan
• Feb 28: I met the oncologist and scheduled surgery
• Mar 3: complete hysterectomy and oophorectomy 
• Mar 24: Sammy had his second gran mal seizure
• Mar 31: I had a smart port placed in my chest

All hell broke loose after that. From my first chemo session on April 14th to my last on September 29th, Sammy and I had seven hospitalizations between us (plus one more for me after that last session).  The most interesting was on April 18th, yes Good Friday. We were calling EMS for I think the 3rd or 4th time because SAmmy's seizures wouldn't stop. They get Sammy downstairs, I follow telling the responders that I had just been discharged two days prior. 

I became very warm and very nauseous in the back of the ambulance and tried to get out. They let me sit down.....next thing I know I am sitting with an EMT right behind me with her knees buried under my arms. I'd passed out. They transported both of us in the same ambulance. I was lucky to not have shown anything other than stress in my testing because Sammy wound up admitted. The ER dr was nice enough to discharge me with the understanding I was heading to the local children's hospital behind the transport team for Sammy. We spent the entire Easter weekend at the hospital. Bonus that weekend was we got our first taste of a service animal. 

                  

And that started our service dog journey. Sammy was admitted again in May for four more days, this time to the hospital where his neurologist participates. 

In early June, Sammy was transported to a different hospital because he'd had a drop seizure on a pool deck. He'd cracked his head pretty hard. Fortunately, no damage. He was wearing a helmet full-time within 2 days. 

At the end of June, Sammy's seizures were cycling. We'd already scheduled him for a VNS (vagus nerve stimulator) placement for July 3rd. June 30th Eric drove us to the hospital and dropped us off for what we though would be a couple days. It was a week. Monday to Wednesday Sammy consistently had seizures. His longest was eight minutes (8) and that was with the nurses giving him Ativan at the four minute mark. Sammy had surgery on Thursday. Normally a VNS placement is outpatient. 

Sammy spent another three days in the hospital. The seizures had taken their toll. He was unable to stand or walk alone. When we were able to get him upright in a wheelchair for 90 minutes, he took a three-hour nap afterward. We came home with PT orders. 

We use a wheelchair for him when we know we're going to be out for a while. Thankfully we shop at Publix where they have Caroline's Cart.  

His medications have changed too many times to count. His first he was allergic to. The next didnt' work. They discovered another allergy in the ER one night. He now takes three daily meds, two vitamins and an allergy pill. He also has two rescue medications. 

My poor kiddo has lost mental and physical abilities that may or may not return. We are hopeful. He's also seen a 35 pound gain since the beginning of the year from the medications and lack of activity (due to his balance issues)

Every day is a challenge. Every day we find something new that Sammy has learned or lost. Sybil will help immensely to keep him calm and able to learn new things and relearn the lost. 

Introducing Sybil

This is Sybil.  She was born Christmas Day 2013. She is a service puppy to be. She's about 6 weeks old in this picture. 

Here is the first picture we actually saw of Sybil.  She's about 5 months old and being raised by Sandy at Sho-Me Labradors in St. James, MO.  We had met with our trainer (Jason Devito of Canines4Hope.com) for the first time in person and he wanted to show us a gallery of dogs available.  Sybil was the very first dog in the gallery and Sammy loved her. We weren't ready to select at that time. We hadn't even done a contract or made a payment.

We made our deposit of $1,000 thanks to many different donations, all private. We started selling bracelets as well. In August Jason called to see if we were ready to select. He sent us another gallery.  Amazingly, Sybil was still available and we knew she was the one. It kind of helped that she was born on Christmas.....we felt she was our Christmas miracle for Sammy.

In October, we had finally raised $2500 to purchase Sybil from Sandy. Sandy was able to take some updated pictures of Sybil.

Our yellow girl is now almost 10 months old. She will be taking her first (maybe only) plane ride soon as she travels from Missouri to Florida to begin her training. 

Sybil will be trained in Autism assistance and Epilepsy response. It's possible that over time, she may be able to detect Sammy's seizures ahead of time. We are NOT expecting her to do that. We are looking for her to help Sammy stay calm and for her to keep him safe in the event of a seizure.

Introducing Sammy

Sammy was born July 19, 2005 on his estimated due date after a failed induction resulted in an emergency c-section. He weighed 8lbs, 2oz and was completely healthy as far as we could tell. He had shown signs of distress in hours leading up to the c-section. We know now that he has a small gliosis in the right temporal lobe that may have been caused from a lack of oxygen at birth. It wasn't found until he as 6 years old. It hasn't grown in the past three years.  Sammy also has an imprint birthmark on his left temple. Most people assumed as a baby, he fell asleep on something. Nine years later, it's still there. His neurologist is keeping an eye on it for any changes. It can only been seen when his hair is super short. 

Sammy began having difficulties keeping formula down almost immediately. We tried nearly every formula Enfamil made at the time, finally settling on Nutramigen. But even that didn't help. After six months (don't wait that long----it's one of my biggest regrets), we were desperate and changed pediatricians. We were seen quickly by a gastroenterologist/nutritionist who changed his formula one more time and it was magic. She had also increased the caloric intake for each feeding. He started keeping everything down and gained weight.

At his one-year check-up, we knew Sammy wasn't developing like other children. We didn't blame vaccinations because we'd already seen signs. At 15 months, Sammy was diagnosed with a pervasive developmental delay and began speech, occupational and behavior therapies. He spent the next 18 months with these wonderful women. Oddly I was grateful when he greeted his speech therapist Jacquie with a squeal saying "AAAAA-EEEEE" before he ever spoke the word mama. 

Sammy then moved into a pre-K ESE (exceptional student education) classroom. Sammy was just three years old, going to school for a full day and riding the bus to a a babysitter.  He made incredible progress that year. We relocated to Michigan at the end of the 2009 school year shortly after the birth of little brother Henry. 

In July 2009, just before his birthday, Sammy got tubes in his ears. What a difference it made. Regret #2 is that I hadn't pushed our ENT in Florida to do them sooner. His words started coming more easily, but he still was a LONG way behind his age peers. He was communicating, but not on a level where people could understand him.

Sammy's next school year was spent in pre-K ESE, then in the fall of 2010, we opted to place him in kindergarten for a year of school readiness. We were not expecting academic progress, but he made it. His teacher was wonderful. Sammy was learning, excited to go to school, and generally healthy. 

We relocated back to Florida in the summer of 2011. We made the decision to have Sammy repeat kindergarten to get the academics. It had been our plan all along. Unfortunately, due to circumstances beyond our control, Sammy lost a lot that year. He had three different teachers, and it was the last one that finally had him on an academic progress track. Regret #3 was not knowing enough to push harder. 

Sammy's first grade teacher was phenomenal. She met him at HIS level, pushed him above his level, and built a true relationship with him. The assistant principal became principal that year (and she still is) and she became one of Sammy's biggest advocates. 

Second grade was a mixed bag. Sammy's regular ed teacher and inclusion teacher both left the classroom within two weeks of each other in October. We had discussed a new teacher before the permanent was hired, but by this time, Sammy had a best friend in the class, Abby. Sammy and Abby are very good friends and relate well to each other. Abby is a wonderful little girl who makes my heart happy because she chooses to be friends with him. In fact, recently, Sammy was the only boy at her birthday party. 

This year (2014) has been an incredibly difficult year. I will post separate blogs about his health challenges, but I want to talk about school. This was the first year we decided to change Sammy from a mainstream classroom with support to a fully special ed class with no mainstreaming. There were a variety of factors, many due to his health. Two months into the school year, we opted for a change in teachers. I don't regret trying his initial placement, but it was hard to support. His placement now is perfect for him.