A New Chapter

It's strange looking at this blog... It was almost a full year ago that I posted.  However, so much has changed in that time.  As Alec's parents, we needed time to accept the fact that his behavior had spiraled out of control so much, and we had tried so much -- that it was beyond even Rafi (his service dog).  This hurt deeply, after all of our effort and the effort of our volunteers, family, and friends to get Rafi with Alec.

We have learned that not only are we dealing with autism, but ADHD, epilepsy, and now additional mental health symptoms that had us left with no choice but to pull Alec out of school in early December 2014.  In March (2015) - a two week, out-of-state, inpatient hospital stay (child psychiatry specific to children on the autism spectrum) was also needed. 

We saw this all starting with physical aggression toward those in Alec's life he was closest to.  It started up, full force in October 2014.  It started at school, it carried over to home with Mom and Dad, and then caregivers...and finally his little sister Dayna.  After coming back from treatment at the hospital on higher doses of medication, we saw the aggressive behavior come right back.  He was not displaying this behavior in the hospital's environment, so they could not effectively treat it.

We had some tough decisions to make.  He was non-compliant and far too unpredictable to send him back to his last school program (pretty much the only program locally that takes children who are physically aggressive with "maladaptive" behaviors).  For whatever reason, he would not ride the school bus safely, even with a 1:1 aide sitting right next to him. We had investigated all possibilities with the school and bus garage and could not ever figure it out. 

We were now looking at residential school programs starting in April, at the recommendation of different professionals.  For the purposes of being generic in this public blog, I will not be naming the school.  The school that could accept Alec as a residential student is only an hour away from our home.  Initially we were told that they would not have a spot for him in any of their residences until June/July.  But then, a miracle happened.  I received a phone call on May 4th (I will never forget the date) letting us know that they had an unexpected spot available for Alec.  The relief was overwhelming, because we knew this program could support Alec in ways that we could not.

On Thursday, May 14th, we brought Alec to his new school, which we all refer to as his "college".  He is obsessed with the Toy Story movies, and in Toy Story 3, the boy Andy grows up and moves away to college.  We presented Alec with his own story where he would be going to college, but Mommy, Daddy, and Dayna would still be able to come visit.

Alec accepted this idea and was so excited to go to college like Andy that he happily helped us to pack up his belongings!  The school and residence house staff gathered all details about Alec and were ready to bring him into the house on a very tight timeline.  I was allowed into his room the day before, to decorate it just like his room at our home.  I had some help from a friend and the room looks great!  Alec thinks so too :)

Three weeks later: he is compliant with taking his medicine, sleeping well at night, interacting with his peers and the staff, and calling home almost every day.  We hope to start regular Skype calls soon.  We have visited the past two weekends, and he is genuinely happy and thriving in his highly structured environment.  He is doing things he hasn't done in so long.  This school is an amazing place, and it was a great fit for Alec.  We are so happy that he is happy and attending school again.  The photos below speak louder than words...

As a family, we are healing from years of chaos and the past six months, which were spent in a constant crisis mode.  Now, time with Alec is spent in a much more positive mode.  While we are at home, we know that he is away, but functioning at a healthier level and attending school, as well as learning critical life skills.  Bill and I were only two people, but now Alec is blessed with a staff of about 20 people, working daily to help him learn, grow, have fun, and be the best version of Alec he can be.  We are still partners in his life, but have a great team to help us realize his full potential - which we always knew was there.

It is the most wonderful thing to report this news.  Even if in the future...whether it be days/weeks/months - if his behaviors escalate again, they have the staff and resources there to get him through it.  He is finally going to places like the eye doctor and dentist again, for the first time in many years, because the level of support is there for him.  Thanks to all of you who have supported us emotionally through this difficult time.  We have come through with promise and hope again.

Photo Catch-up, July 2014

Here are some photo highlights of the good moments with Rafi since he's joined our family!  Enjoy!

 

This is one of the things Alec likes to do with Rafi -- put water on his head while he's in the bath :)

 

Sweet moment at bedtime

 

Hangin' on the couch

 

 

Rafi at poolside

 

Alec splashing with Rafi

 

Alec and Rafi spent 20 minutes together in his play tent :)

 

Family on the couch (minus Mommy taking the photo)

 

Rafi and his favorite toy - the Jolly Ball

 

Rafi at Alec's therapeutic horseback riding lesson

 

Rafi hanging out in Alec's tent :)

 

Alec likes to put Rafi's collar on

 

The family at sister's birthday party

 

 

An adorable photo of "baby Rafi" from his foster family!

Another Trip to the Hospital Within 10 Days...

This morning at about 2:30 a.m., Bill heard Alec fall out of his bed.  It was another seizure.  Rafi didn't bark alert because we still have some reinforcement training to do, but his crate is pointed right at Alec's bed, and it was good for him to see it.  Rafi recognizes when the 4 Paws trainers appear to have seizures (they pretend to have a seizure and then prompt a bark), but that needs to translate over to Alec and that will take some time.  We have faith in Rafi!

It was another seizure similar to the one that happened in Ohio.  Our local hospital mentioned that this appears to be a "Focal" seizure.  He was sedated and had some testing done, and further testing will be done in Rochester this Wednesday.  Rafi rode in the ambulance and comforted all of us in the children's hospital.  He was "on duty" for over 6 hours and did a wonderful job.

Below is a photo of Alec on the  hospital bed, with his Rafi <3  We are so grateful for this special dog in our lives, at a time when it's very much needed.

Photos from Graduation and Trip Home: 4/11 & 4/12

The photo above: Alina Joseph and family - Rafi's foster family :) 

They provided socialization when he was a puppy, as well as basic obedience!

 

Little sister Dayna accepting Alec's medal for certification as a service dog team

 

Our class logo, created by classmate Jennifer Kalis

 

Rafi sporting his official vest!

 

Rafi hopped in the driver's seat like he knew how to drive!

 

Rafi's new home in Alec's room - with a good view of Alec's bed :)

 

Traveling home from Ohio!

 

Alec & Rafi at 4 Paws

 

Sleepy Boys - our last night at the hotel

Preparing for the Public Access Test

Today we brushed up on more obedience and behavior disruption techniques.  After our lunch break, we had the official "going home" talk.  Tomorrow each dog must take and pass a public access test that 4 Paws requires in order for us to take our service dogs home.  It will be at the mall where we have been visiting.  Rafi is a smart dog and the training has been great, so we're not worried :)

Below is a photo of 4 Paws trainer, Jennifer, and Rafi.  Jennifer did the most 1:1 training with Rafi and we are so impressed with her.

 

 

 

Alec has been very behavioral the past few days and we can't wait to get home and settle in.  We are very excited about graduation tomorrow!  We will be meeting Rafi's foster family tomorrow.  They fostered him as a puppy before his basic obedience training started at 4 Paws.  Tomorrow will also be our last day with the families we have gotten to know so well in this 2-week journey.  Bittersweet.

 

Also exciting is the e-mail I received today from Alec's teacher, giving the official green light for Rafi to be at Palmer Elementary as of April 28th!  Bill will be in the class, training the 1:1 aide (who is very excited to work with Rafi!).  We hope that this will be the start of more good things to come.

 

Here's one more great family photo from training:

 

 

4 Paws Training: Days 9 & 10

We are on a steady training diet of classroom obedience, tracking at the park, and public indoor tracking.  All of us in the class, AND the dogs, are EXHAUSTED!  We are hanging in there for graduation, which is Friday, 4/11!  Today, Alec had a very behavioral/meltdown kind of day and we couldn't practice outdoor tracking at the park.  However, we did well in the morning with indoor tracking at Wal-Mart in their Health & Beauty department :)

We have come to the conclusion that the tethering feature (which allows us to connect Alec to his dog) is not going to be practical in many of the situations we hoped for, due to Alec's size/strength and determination to pull Rafi so much that it's counterproductive.  For things like a walk in the park, where everyone is pretty much going in the same direction, it should work just fine.  For public places like the mall, where Alec is overstimulated by the environment, it's not going to work.  These are times I wish I had done this service dog thing when he was 4 years old instead of 9.  Hindsight is definitely 20/20...

The great news?  Here's what Rafi CAN do, and it's worth a million bucks to our family: search and rescue (tracking by scent), behavior disruption, calming techniques, and (newly added) seizure alert.

Here are some photos from the past few days:

Day 8 @ 4 Paws Training

This morning we had more training at the 4 Paws center, followed by an outdoor track (Rafi again did an amazing job finding Alec in the rain!).

After tracking we had lunch at McDonald's, where Rafi did a great job avoiding french fries and keeping in his "down" command :)

The rest of the afternoon was spent at the mall.  We connected Alec and Rafi for tethering for the first time, and they both did pretty well!  Keeping Alec in one spot was not pleasant, but as long as we kept moving, things were pretty good :)

 

 

We even had time to get Alec's photo with Spiderman!

 

Off we go to dinner shortly - with Rafi, of course!  End to a pretty good day...

 

No Shortage of News... Days 5 - 7, Training at 4 Paws

Wow.  There is a lot to catch up on.  The biggest news happened yesterday (Saturday) morning, a little after 5:00 am.  Bill and I have been sleeping with Alec between us at the hotel.  We both woke up to Alec shaking and jerking his body, drooling profusely, very labored breathing/choking sounds, and dilated pupils.  Yup...his first seizure.  In the back of our minds we were prepared for this possibility.  When males with autism start to get closer to puberty (which Alec has entered early puberty, also common with autism), they are prone to developing a seizure disorder if they haven't had them before.  That is what we may be looking at.  So, 911 was called and Alec was taken to the local children's hospital.  The paramedics and hospital staff were great.  Because this was his first seizure, and we are from out of town, the doctor decided to hold off on any testing, unless he has another seizure while we are still here in Ohio.

I contacted his child psychiatrist by e-mail, thinking that it would be Monday or Tuesday before he could get back to us, but the information was too much to leave on a voicemail.  This is the doctor I like to refer to as "Dr. Awesome" because he responded within a few hours with a game plan for moving forward once we got home!  We've been on a waiting list for a hospital out of our area to do an EEG for seizure activity, but haven't received an appointment yet.  However - now that we have Rafi, we can have this test done at our local children's hospital that Dr. Awesome is affiliated with.  We were waiting on the facility (Strong Hospital in Rochester) that has a better track record for this test on autism spectrum children, but are confident we can get a good result with Rafi's help at Upstate :)

So, the good news is that we are surrounded by parents getting their dogs at 4 Paws whose children have seizure alert dogs.  These parents have been so helpful and supportive to us.  Also, we are not too late in training Rafi in barking to alert for a seizure!  Our biggest concern is that it will happen at home during the night and we won't hear it.  We got the instructions for training in today's class :)  Also found out that prior to Rafi being chosen as Alec's dog, he had some seizure alert training.  Besides the fact that this amazing dog is an excellent tracker for search and rescue, and very strong for tethering, we couldn't have asked for a more perfect match for Alec.  4 Paws delivered, and then some!  These trainers are simply amazing.

Some cute things -- his main trainer Jennifer has a few nicknames for him, and we have adopted one of them because he responds so well to it.  She called him "Fiquers" (from his original name Rafiq).  Pronounced: fee-kers.  It's too cute, so Bill and I have been using it :)  We have also learned that he chases his own tail.  For real - all you have to do is show him his tail and wiggle it!  Adorable...

Here are some photos from the past few days:

Day #4 - Tracking Practice

Last night before Alec fell asleep, he had snuggle time and pet Rafi :)

 

Another great photo from Day #3

 

Rafi hanging out in the passenger seat, waiting for tracking practice!

 

Treats from Alec in the van!

 

 

 

Day #4 was AMAZING!  I wish we had photos from tracking in the park, but it was raining heavily and we do this, rain or shine...  At 9:30 on Thursday morning, we all met at a local park.  Each child and dog waited in their car until it was their turn to track, but many parents watched many of the children's dogs do their tracking.  It was amazing to watch.  Up until yesterday, the dogs were trained to track on of the 4 Paws staff, Rob.  Now we have to re-program the dogs to track their child.  As soon as Rafi's tracking harness was put on, he got very excited.  As Alec and Bill (Daddy) walked away, Rafi was allowed to watch the first couple seconds of them leaving and was barking loudly!  As they went and hid behind a large tree, I took Rafi aside so he couldn't see where they were going.  Then, the magic happened...  A retractable leash is used to allow the dog lots of room to track by scent.  What they are following is the child's skin cells that are shed naturally just by moving.  It didn't take long... Alec and Daddy were found!  It was a beautiful sight.

 

We also learned that tracking and tethering dogs don't wear vests like other service dogs.  They instead wear a harness that is better for these activities.  Today (Day #5) we are going to the mall in the afternoon to practice basic obedience in public.  Once we get the dog's card that goes into the harness, they are OK to go pretty much anywhere as a service dog.  However, we still need to pass the certification test on Friday 4/11 to be able to take Rafi home.  We believe he is the perfect match for Alec and our family.  We love our Rafi!