Progress

Last week I was fortunate enough to stay home for a couple of hours and watch Gavin's therapy sessions. I typically only get to see a half hour each week of his 14.5 hours that he participates in weekly. There were a lot of pros that I will get to later, but the negatives were so clear that they left me going back to worked frustrated and somewhat defeated.

I have been thinking that Gavin has made tremendous progress with eye contact, but I have come to learn that skill has only improved with Doug and me. He struggled and sometimes refused to look directly at his therapists several times throughout the session. It's painful to sit back and not jump into the session and help him along. I have to sit there quietly and observe all while watching him grow frustrated that he can't communicate what he wants. There are moments when I wish that I spoke Gavin's language. I can see that he understands what is happening, but he lacks essential tools to communicate back with all of us. It is truly heartbreaking.

Now onto the pros...Gavin's receptive language has improved tremendously. He is able to follow simple directions like grab your shoes or give mommy a hug. He also is showing just how intelligent he is when he is playing with various puzzles. He can complete them with minimal assistance and points for the pieces he wants next.

I know that his progress will continue to be gradual, but the mom in me wants it to happen so much faster; for me but also for him. I just hate watching him struggle, I'd give anything to make life easier for him.

Bubbles :)

It is by no means "officially" Gavin's first word, but this weekend I heard the closet sound yet. I was sitting on the couch on Sunday morning and Gavin walked over to me with a container of bubbles. He handed them to me with the biggest smile and said "Bu-bu"! Close enough for me :) I swooped him off the ground and said yes "bu-bu" say it again. He stood there silently in front of me doing the ASL sign for more. I quickly opened the bubbles and started blowing them hoping to prompt him to say it again, but no luck. Let's hope we are on the right track. I have waited two years to hear his first words and if bubbles are what he wants...bubbles he will get!

Happy Birthday, Gavin!

Last week my sweet little boy turned two! It's hard to believe everything that has happened in the last year and more importantly in the last six months. It was his 18 month appointment that I asked his pediatrician if we could get a referral for a speech therapist. Little did I know what would come of that request. I am so grateful that we were able to catch his diagnosis so early and that he will now receive an entire year of services to aid him with his development.

He may not be at all the milestones you would expect for a two year old, but he has his own amazing strengths. For instance he has one of the best laughs I have ever heard. I wish I could bottle it up and share it with anyone who is feeling sad. He brings so much joy to us with that little giggle.

He loves his sister! Maybe he can't say the words, but he shows it by lighting up the second she enters a room. He is very interested in watching what she is doing and will steal toys from her as any younger sibling would do. Kendall equally loves him and would do anything for him and will always have his back. She is slowly learning what Autism is and what it means for Gavin's development. God definitely partnered them together because he knew the strength and support they give to each other. 

Happy Birthday, my sweet angel. I am so honored to be your mom! Your dad and I will never stop advocating for you. We love you.

Vacation

Two weeks ago we went on vacation to Hilton Head, SC, to enjoy some much needed family time. The entire period leading up to this trip Doug and I kept saying we never needed a vacation more. However, as much as we wanted a week away from thinking about everything that surrounds Gavin's diagnosis the truth of the matter is that we can't walk away from the fact that he has Autism.

From the 18 hour car ride that set his schedule off balance for the first day, to being in a new environment that wasn't his typical routine...this vacation was far from relaxing. By the second or third day he became more comfortable being in my parents condo, but still with every passing day  there was something new and different for Gavin that would send him into a tantrum state.

The first day at my parent's pool we just walked around the outside in circles. Two or three days later he became fascinated with the pool shower, used to clean off sand, and would just stand there the entire time getting splashed with water.  On day four when we were trying to do our normal walk around the pool he became freaked out by his shadow and had a meltdown. Finally on the last day at the pool he was comfortable enough to play in the water for an extended period of time.

Luckily, for the most part, it was just our family at the pool most days. Typically one or two other people would show up to sunbathe, but did not stay very long. It was nice to not feel the constant stares from other people on why my child is acting like this in a public place. The uncomfortable looks of disapproval like I don't know how to parent or control my child.  There are definitely days and moments that I want to scream out "He has Autism...Ok?!", but then I realize I hate that label and I don't want to have justify his behaviors to the world. It would be nice if more people could just be understanding. If they could see that this is really a struggle for us and that staring probably isn't helping anything.

We decided to do a dolphin cruise because this summer Gavin loved being on our friend's speedboat and we thought this would be a family event he would enjoy. Unfortunately a leisurely dolphin cruise does not have the same speed of the boat we took him on this summer. He became restless very quickly and it was a very long 1.5 hour ride to say the least.

All and all though we made a lot of memories. I'm a so grateful we had this week with both kids. I never get uninterrupted time like this at home and for that I am grateful. Kendall had a blast! She loves the water and it was great to see her enjoying both the pool and the ocean. One day while looking for seashells with Doug and huge wave came and pulled her water-shoe off her foot. It got pulled away too quickly for her or Doug to find it. On our last day in Hilton Head she was saying good bye to everything on the island she would miss. She ended her good byes with a "Good bye, shoe. I'll miss you". How cute is she?! Moments like that help us stay strong and remember that we really are blessed

Services

Thank you for all of your good thoughts and prayers! Gavin will begin services with our top choice agency, Building Blocks, in the next few weeks. Next week they will come out and do, yet another, assessment with Gavin to figure out his skill level. From there we will work with them to develop an intensive plan that works with our day to day needs.

Right now they are able to offer him 10 hours a week of therapy. The hope is over time as other kids age out of the program they will be able to offer him a total of 20 hours. In addition to those hours he will continue to get three hours from Early Intervention which include basic development, speech, and occupational therapy. Thirteen hours a week is some part-time job for our little trooper!

 

We chose this agency because we like their approach the best out of the other seven agencies we were exploring through the process. Building Blocks utilizes an approach called the Early Start Denver Model. Some individuals will argue that this model is not as successful because there is not currently enough research out there to support it's results. This type of therapy encompasses both Applied Behavioral Analysis (ABA) along with developmental and social-based orientation that are a  routine techniques associated with floor-time. Floor-time is more commonly used in Early Intervention (EI) practices. We have witnessed Gavin having success with the floor-time approach in EI, that we weren't bothered by the fact that there isn't as much research out there to support this method. We feel comfortable with his current success that the the mixed teachings will best support his learning style. 

Things are coming together...I hope!

I am trying really hard not to get my hopes up, but I think we might finally be on the right track to getting all of Gavin's services set-up. Yesterday after a three month waiting period he was finally assigned an occupational therapist to his case. The OT will be able to provide Doug and I with techniques to help calm Gavin down when he is feeling restless. Gavin is an interesting case because he is both sensory seeking and sensory avoiding. At the end of the day we know that the OT can't work miracles, but she can definitely provide us with the tools we need to place Gavin on a better path for success.

When Gavin is in the sensory seeking state he is jumping on furniture or crashing into the couch. He is always on the go, he loves to roughhouse or be tickled, and constantly has to be touching something. He can, at times, be aggressive but it is really just him seeking out what he needs again. He never means to hurt anyone.

His sensory defensiveness is similar to my last post about his haircut.  Common symptoms that we notice with Gavin include over reaction to high-pitched noises, intolerance of bright lights and uncomfortableness with certain types of fabrics that come in contact with his skin.We have already accepted that the Halloween costume we bought him at the end of last season will not be worn this year. Instead we will buy some cute Halloween related apparel.

Yesterday we also met with our first agency, which is our favorite, for ABA services for Gavin. We LOVE this group because they are understanding that we are still a family and we need this to work into our everyday life. They offered to do sessions at the grocery store to teach Gavin how to behave in public places and to walk to his weekly play group at the library so he learns to sit in circle time. The just seemed so amenable to accommodating our lives. Fingers crossed we are supposed to hear back from them on Thursday!

Haircut

Autism and Sensory Processing Disorder (SPD) are not the same thing, but they are often linked to one another. On top of learning about everything that goes along with Autism we are also figuring out how to help Gavin, who in addition to Autism, also suffers from SPD symptoms. In a nutshell, SPD is a neurological disorder that causes difficulties with processing information from the five senses.

This weekend we took Gavin for a haircut and it was heartbreaking to see his reaction to being in that setting.  While sitting in the waiting area he continuously covered his ears whenever the clippers or the hair dryer would turn on for other customers. Normal sounds to the rest of us that we can tune out are like nails on a chalk board to him.

When it was finally our turn I sat in the chair with him to hold him during the haircut. He wiggled and moved the entire time and freaked out as the hair fell on his face. I sat there praying that it would be over soon and that they did not cut him at all during this experience with all of his movements or we would never get him in the seat again. The 7-10 minute haircut literally felt like an eternity.

Kendall has always been leery of haircuts too, but with girls it is much easier. There is never the thought of clippers and growing her hair out isn'tweird. But for Gavin he keeps a pretty styled spiky look that needs to be trimmed every 4-6 weeks. I feel awful constantly putting him in this situation and wish with all of the 1 in 88 kids that are being diagnosed with Autism that there were places that would offer special services for kids on the spectrum. There has to be something out there that can help to put them at ease...and I promise you it is not just a lollipop.

Sorry we have to cancel...

Today I woke up excited for a couple of reasons. One being that it is the last day in a 16 days stretch that I have to work, but the second, and more important reason, that I was finally going to meet with an Autism specialist from Boston Medical Center to tell me about all the resources in the area.

My appointment was scheduled for 9:30am and at 9:15am I received a call letting me know that unfortunately she wouldn't be able to make it today and she would need to reschedule. This appointment took two weeks to set up and we are now 25 days out from learning about his diagnosis. We have had little to no success; this was my one glimmer of hope that things were finally going to start to come together.

It's moments like this that I just want to scream out in frustration. I am trying to be so strong and handle of this with grace, but I also just want to help my son. The day we received the diagnosis the doctor told us how great it was that they were able to discover this so early because the resources at his age would be able to do so much for him. Right now it feels like none of these services will ever start so all we did was catch it early with no support.

Trying to channeling good thoughts to turn this negative situation into a positive one. 

Italy

A week before we received Gavin's diagnosis I found this beautiful story, by Emily Kingsley. It really puts everything into a perfect perspective.

My Trip to Holland 


I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandt's.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

The "A" Word

As a parent, there are several things you never want to hear about your child. At the top of that list, hearing that your son or daughter is sick or ill. I will never be able to forget the afternoon I sat in my living room listening to my son's Early Intervention therapist list off the multiple red flags she saw for our 19 month old son on the Autism Spectrum.

A million thoughts began to flood my head. How could this possibly be right? How did we miss these signs? I immediately came up with my own answer that this simply couldn't be right. Clearly he's just delayed in speech. Most boys talk late, right?!

I kept hearing her say, that she couldn't diagnose Autism, but it was definitely her recommendation that we get him checked out. She explained that it was a three step process, but it was great how early we were catching this for him. I left that appointment confused, overwhelmed, and ready to disprove everything she just said.

Thus began a two and half month long process of waiting for his evaluation to take place and starting to question everything our son did on a daily basis. One day I bought him new shoes and he threw a fit.... Was this a sign of Autism? The next day he bit his sister...is this toddler related? Nothing made sense and no one had an answer that was consistent.  I slowly felt myself losing it and just praying that we could get an answer. However, on August 13, 2013, my life changed forever. The word Autism was officially associated with our son. In that moment I wanted to take every prior thought back. I didn't need an answer...not if this is the label that would now be linked to him.

The days ahead became, if at all possible, even more overwhelming. His diagnosis came with a recommendation of 20 hours of therapy a week. However, after three weeks of trying, I couldn't get a single agency to take my calls or to even bother to call me back.

Now, as more hours, days, and weeks pass I wonder if we will ever get him the care he needs on top of trying to figure out what all of this means. We made the difficult decision to pull him out of daycare. With that decision came the frantic search to find a nanny to care for him....ultimately having to hire three different people to cover the week! With each passing day it feels like more and more hits keep coming. I know that I need to tell myself to step back, take a deep breath, and maybe even cry a little until this whole therapy situation sorts itself out, but it is so difficult. 

When I started this blog many years ago I appropriately titled it My Journey...My Life. I am returning to the blogosphere again to share this new journey with all of you. It will hopefully serve as my memories and a resource for family and friends about what is going on with us when we don't have the actual ability to talk about it out loud.