August 13th

August 13th used to just be another day in what had always been considered a crazy month for me, during my ten years in the world of student affairs. However, last year, August 13th forever changed my life. It is now the date I have often had to repeat to doctors, therapists, public schools, friends and family, as Gavin's official diagnosis date. In many ways it's hard to believe that it has already been a year. There are still plenty of days when his diagnosis still feels so new and so difficult to understand.

A year ago, when we received his diagnosis, I specifically remember listening to his developmental pediatrician tell us he was too young to truly know where he fell on the spectrum. She encouraged us to remain positive and to know that he could potentially catch up to a "typical" child's milestones with the amount of therapy (20-25 hours a week) that she was recommending for him.

As parents, Doug and I gravitated to that positive comment and hoped that Gavin would in fact catch up to his peers. We had read several articles, at this point and time, about children who received a diagnosis only to learn that within a year of intensive therapy they were no longer considered a child on the spectrum. We left that appointment feeling overwhelmed by the diagnosis, but hopeful that he too would be one of the misdiagnosed children.

About a week later we received his official report in the mail and our hopefulness quickly turned to discouragement and reality. I despised reading the fifteen page report. Page after page my optimism about where he could be in a year quickly faded. The clinical language sounded so negative and failed to illustrate the beautiful little boy that we knew Gavin to be in our home. The line that made me weak in my knees and literally sick to my stomach stated, "His total score on the ADOS-2 is consistent with a "moderate to severe" diagnosis on the Autism Spectrum. What?!?! Where in the world did this come from now? What about the comment that he was too young to place him on the spectrum? We had been thinking for about a week that he had high functioning Autism based on his pediatrician's comments. To put it simply we were nothing less than devastated.

All of the articles I had been reading about Autism did not prepare me for the heartache and pain that would follow. For a month I cried myself to sleep every night. I cried at the mention of the word Autism, I cried watching him "play", and I cried trying to explain what was going on with Gavin to Kendall. At least once a week someone would tell me that God only gives us what we could handle, but I didn't want to hear it; I didn't want to have to handle it. However, after a couple of months had passed I finally accepted that I had to "handle" it!

I realized I was getting nowhere being sad and I was going to waste the enjoyment I could be having with Kendall and Gavin by thinking about the negative. I stopped concentrating on all of the things Gavin couldn't do and started focusing on all of the progress he was making. That's not to say that every day was perfect or that I never felt discouraged, but I made a conscious decision to strive for an attitude that was filled with hope and love.

So it's a year later and here we are. Gavin is far from the definition of a "typical" kid, but regardless he is a phenomenal little boy! A year ago he didn't know his own name, but now he can follow two step directions. He has developed his own language that his therapists, babysitters and the three of us in his immediate family understand. He displays an interest in wanting to be able to speak and we continue to pray that one day he will no longer be considered non-verbal.  

And so begins our second year in the world of Autism. I know that this journey has a lot more challenges for us to face along the way, but I also know that we will continue to work through every struggle as a family. Gavin only has two and half months left with his therapist team. It will be extremely hard for all of us to say good-bye to them in November. Being an Autism parent means opening your home every day to different providers to care for one of your most prized possessions. In the year that we have been working with them, they have become a part of our family and I expect some tears to be shed when Gavin turns three and all of this “normal” for him comes to a screeching halt. They treat Gavin with so much love and dedication that we will definitely feel the void when they leave.

Here's to another year of learning about this disorder, figuring out the process of completing an IEP and continuing to be Gavin's biggest advocate. Thank you to all of our friends and family who have supported us this past year and continue to ask about Gavin's progress. They say it takes a village to raise a child and we will never turn away anyone who wants to help support his development.

Sharing our story

Yesterday I took a big leap; I let my guard down and allowed everyone in my circle (and some strangers) to have a glimpse into my life through my blog. I didn't realize what a scary and rewarding experience this would be for me. It felt like I accidentally left my journal laying out and it was up for grabs. In that moment anyone that wanted to take a peek at my life now had the ability. I finished the day with over 700 views and some amazing comments and private messages from friends and family. I have now made connections with other friends who have children on the spectrum (that I didn't know about) and I have helped people understand what a day in the life of the Altenburger house can look like in a typical week.

Last year, I slowly started writing posts again on my blog after Gavin was diagnosed. I was mostly doing it as my own therapy. I wanted to be able to have an outlet to share with people what I was feeling, but also to be able to look back and reflect on some of these moments. I would often tell Doug what I blogged about, but that is pretty much where the sharing ended. A few friends would read my blog because I had mentioned it to them or they still had my web address from long ago. Last week as I was telling Doug about wanting to blog about Gavin's routine and we both realized it was time to share my entries with more than just a limited audience.

My goal is still the same, to use this platform as my therapy. Writing helps me process what I'm going through and it serves as my memory bank when I'm too exhausted to store all of this in my head! I hope that people will continue to follow my posts and find answers to some of their own questions or just be there to join us and support us on this very real journey we are on in the World of Autism!

One of my favorite earlier posts, was about a story by an author named, Emily Kingsley, called Italy. If you have not had a chance to dig through my blog and find it, I encourage you to click on the link above. I stumbled across this story when Gavin was first diagnosed. It perfectly describes what life is like when you learn your child has a disability. Many of you complimented me, yesterday, on being willing to change my way of thinking for Gavin, but I look at it as the only choice. I love my children beyond words and being their advocate and their support is the reason I am blessed to be their mom.

It's time to see the world through Gavin's eyes

Many people ask me about Gavin's biggest struggle. However, I realized recently that I have been answering with my biggest struggle with Gavin. I have consistently told people that it is tough that he is still non-verbal. Upon reflection though this isn't really frustrating for Gavin, anymore. He has learned how to communicate with us through sign language, communication boards, and gestures. He even has about 20 word approximations that we as family members understand. He doesn't appear to get as frustrated, because he has discovered his own resources to try and communicate with us.

What frustrates him is when we try to change his routine. Gavin is used to things being a certain way on a typical schedule, and deviating from that really doesn't make sense to him. A couple of weeks ago I had a battle with him to try and wear new shoes. Now this is a battle we had experienced before but I thought this time I would win. I bought him the exact same grey converse that he had been wearing for the past three months. In fact, I bought several pairs of this shoe in varying sizes so that we could avoid the tantrums in the future.

The joke was on me though. Gavin noticed the only difference in these shoes right away...they were new and clean!!!  He through a fit and refused to put on the new shoes. We finally left the house with just his socks on his feet and his shoes in my hands. When it was time to get out of the car at our destination he still refused to put the shoes on. We sat in the car for an extra fifteen minutes before I finally got the shoes on him. I thought I had finally won, he will love these new shoes and quickly forget these are not his every day pair. Instead, when we got home he ripped off the new shoes, found his old shoes, brought them over to me, and requested that I put them on him. Operation new shoes = failure.

Last week, as the temperatures were finally starting to increase, I took on my next battle with Gavin...shorts. After one kick to the face and one to the stomach, I finally got him in the shorts. He sat in the middle of the room for about five minutes (it felt like 5 hours) and cried. I finally held him in my lap, rubbed his back, and pulled out some trains to distract him. By the time I left for work he seemed like his normal self. About two hours later I received a message from his nanny that he was very angry that day. He was kicking people and items and didn't want to engage in activities. This didn't sound anything like my happy boy.

I told his nanny to grab a pair of pants from his room and show them to him. She said once she gave him the option of wearing them he instantly gave the sign for "me". She quickly put the pants on him and within seconds his demeanor changed. He calmed down and started to snuggle her during his break. No more kicking or fighting.


I have been very aware of Gavin's sensory issues for awhile now. For instance I know he can't wear shirts with tags, he strongly dislikes polos or button up shirts, jeans, pants that make swishing sounds, and other items. I have respected all of those boundaries because there was no sense in making him uncomfortable, but for weather appropriate clothes I pushed. I pushed and I should have been listening. I was telling myself that he was miserable in pants in the heat, but the reality is he was miserable in shorts. He is also uncomfortable in sandals/flip flops. These items are not a part of his routine and I am taking his little bit of control away. 

I realized last week, that if the change is absolutely unnecessary, then I need to listen to Gavin. I need to be more understanding of Gavin and stop trying so hard to have him conform to our standards. I need to start seeing and feeling the world through Gavin and stop trying to make him see it from my point of view. He's already taught me so much, I have no reason to resist him on his vision.

Autism Awareness Month

It's funny how a year ago the thought of Autism was so far from my mind. On April 2, 2013 I had an assessment scheduled with our area Early Intervention office because Gavin was delayed in speech. He was 17 months old and was not babbling at all. In fact, he had actually had lost the speech he had developed months earlier, but still, I wasn't worried. I mean Kendall didn't start talking right away and we didn't get her evaluation until she was 2 years old. I was so proud of myself for scheduling this earlier for Gavin so that he could hopefully be talking by the time he was two.

Gavin is now 30 months old and he is still non-verbal. He communicates strictly through signing, pointing and approximates about 10 words. Doug and I understand these sounds/words, along with his therapists, but to the outside world they wouldn't know what he is trying to say. We have started to introduce communication boards into his routine. These communication boards have pictures of items he wants or needs. We can also use them to map out his day. Our ultimate goal is to have him communicating this same way, but through an Ipad or another type of tablet. The problem is the price of these apps and tablets. Hopefully organizations like Autism Speaks, the HollyRod Foundation, the National Autism Center, and other Autism centered charities can help raise funds to subsidize the cost for more families.

April is Autism Awareness Month and I encourage you to find someway this month to support Autism awareness programs. One in 66 children are affected by this disorder and we need to figure out why, how to stop it, and how to support those that are already on the spectrum. I didn't go looking for this cause this cause came to me and I will do everything in my power to be the best advocate I can be for Gavin and for all of the other families.

Someone with Autism has taught me that love needs no words - anonymous

Here we go again

It's that dreaded time of the month again when Gavin needs a haircut. Sigh.

The last time, I took him to Supercuts just before Christmas so he would look adorable for pictures. Before we could even get inside Gavin started screaming. He remembered this place immediately and the rest of the trip became my strength over Gavin's. I sat with him in the chair and held him down the entire time. I swore to myself I would not go back to this location so that he would not get worked up a head of time and that I would not go by myself again.

Fast forward to today. I found a new place for us to try called Snip-its and they specialize in children's haircuts. I actually did a search on them and they are highly recommend for kids with Autism. The woman cutting his hair insisted on using the trimmer on him because it would be faster and more accurate. I panicked because we have only ever done a scissor cut before, but Doug had a good idea to hold them up to him to see how he did with the sound. When she turned them on he definitely squirmed, but it wasn't anymore than he had in the past. She made a comment, "Oh he's a sensitive one isn't he?", to which I quickly jumped in with, "Yes, he has Autism". I have to give her credit though, her demeanor immediately changed. She became very understanding and very patient with Gavin. She threw out multiple suggestions on things we could do to distract him, but unfortunately none of them worked. By the end of the haircut, Doug was sitting in the chair with him holding him down, and I was standing behind the chair holding both of his hands....no wonder this is a traumatic experience for him! After 45 mins. we were finally done....that's right 45 minutes!!!

I felt awful for Gavin for so many reasons and I wanted to cry myself because I hate restraining him. The worst part of the experience should have been what we put him through, but unfortunately it wasn't his crying, or us fighting with him to calm down, it was the horrible stares that we were receiving from the other parents. We specifically chose this place to try because we figured we were amongst other parents. Maybe not special need parents, but there is an expectation between parents that you get it and shouldn't be judging others.

I felt like we were on display and it really sucked, to put it bluntly.  I initially noticed a 7 or 8 year old girl looking at us and I thought, "sure she doesn't understand". However, I then saw her father two chairs over staring at us. I wanted to go up to him and say at least I'm trying to help my child you are just reenforcing bad manners with yours. Doug knows me and my worries so well and tried to make me smile at the end and said "Don't worry, I don't think anyone noticed." I laughed, but was still to angry to let it go. I responded to him with a very passively aggressive comment "Oh no, everyone was staring!". Our hairstylist commented to me "oh sweetie they were just reminiscing about when it was their child". Ok, lady whatever you need to tell yourself.

The least amount of judging we can do the better off we are. - Michael J. Fox

I want to talk to my son

Growing up one of my favorite movies was Mr. Holland's Opus. The main story centers around Richard Dreyfuss' character, Glenn Holland, who takes a job as a music teacher just to make ends meet.

One of the sub-stories in the movie focuses on Dreyfuss' character's son, Cole. Cole is diagnosed with a hearing impairment as an infant. Dreyfuss' character becomes saddened and disengaged about Cole because he thinks that his son will never be able to enjoy and experience music the way he has his entire life.

So why on Earth am I mentioning this movie in my blog?! No I haven't suddenly taken a new job as a movie critic, I actually do have a point. There is a scene early on in the movie between Richard Dreyfuss and his wife played by, Glenne Headly, that I think about often after we received Gavin's diagnosis. Dreyfuss and Headly are arguing about enrolling Cole in sign language classes. Dreyfuss is against it because he thinks Cole will never speak, but Headly's character is arguing that she wants to do it because she thinks it will help them communicate with him. At the end of the scene she breaks down and starts hugging Cole who has been having a tantrum the entire time and screams "I want to talk to my son". 

This scene broke my heart as a teenager...without a thought in the world of being a parent. Now that I am a parent, in particular to a son I can't communicate with, this scene just hits the nail on the head.  I included the segment below, but the actual argument I'm referring to doesn't start until 45 secs into the clip.

In case you are wondering, yes, I know that Gavin isn't deaf. However, he is non-verbal. It breaks my heart when I can't figure out what he needs or wants. This scene is very real and happens daily in our house; just ask the students in the building because I'm sure they hear him! Gavin pulls us into the kitchen, his bedroom, our living room, the room doesn't really matter, and he tries to tell us what he wants. He will point at different spots around the room and will shriek loudly until we figure out what he is really asking for from us. Through his early intervention program and Building Blocks program they have taught him a few signs, but they aren't trained in ASL so it only gets him so far. Right now Gavin knows the sign for help, more, all done, up,  and me. Pretty limited when trying to tell someone what he wants. 

I keep thinking about signing up for an ASL class for me and him. His receptive language has improved so much that I think he could catch on rather quickly to the signing. I honestly think it would be great for him if he had some way to utilize his own version of expressive language. I remain hopeful every day that Gavin will speak, but the reality is right now at 27 months old he is still non-verbal. And at the end of the day...I want to talk to my son...and I will do whatever I have to do to make that possible!

You have met ONE child with Autism

For the past six weeks we have been watching Gavin's eating continue on a downward spiral. I used to brag that he was the absolute best child eater. He would seriously consume anything you would put in front of him and repeatedly ask for more. Slowly though he stopped eating his favorites, he experimented with a few new things, but now has stopped eating altogether. A typical day for him now consists of 1 cereal bar, 2.5 chicken nuggets,  and two glasses of juice.

We took him to his pediatrician yesterday and learned if this continues we should be concerned about dehydration because his diapers are barely wet. In addition over the last two weeks he has lost four pounds, which is obviously not good for a small child. When asked what's causing it no one knows. The answer we get is pretty generic that it is normal toddler tendencies, layered with Autism, layered with his sensory issues....but there are no real suggestions of where we go next.

Kendall has always been commended by her teachers for her amazing empathy skills. This week she has shown me on several different occasions her amazing compassion for others, most importantly her brother. The other day she came up to me and said "Mommy, next year I'm going to ask Santa to help Gavin like food again so he can eat.".  Then yesterday she pulled me aside and said "Mommy I really wish Gavin could talk because then he could tell us why he gets upset and that would make him happy." Talk about melting your heart. I am so blessed to have both of them as my children, but I feel like Gavin doesn't even know what an incredible big sister he has in her.

I continue to have faith that he will start eating again soon, but it's a struggle to remain hopeful most days. Each meal I sit him down and try to get him to eat. He then either screams at me to remove the food or just throws it at me or on the floor to avoid eating it. His lack of eating has also turned into a lack of sleep because he is waking up hungry. On evenings when we can get him to successfully eat he sleeps through the night, but if he doesn't touch his dinner it is hours of restless sleep for all of us.

I often tell myself not to get upset because there are so many things that could be worse for him. This is not a terminal illness, but instead a disorder that causes him to live life differently. But the trouble with fully believing that and being ok with everything is that there are so many unknown answers with Autism.  I have been told by several people if you have met one child with Autism you have met ONE child with Autism....no two are alike and that is the struggle in trying to figure out answers when things aren't "normal" with your child. The doctors know that it is probably related to ASD, but why it's happening, if they have not seen it before, is a new mystery for all of us.

“With faith, there are no questions; without faith, there are no answers.”
― Yisroel Meir Ha-Cohen

Perceptions

I am amazed by the number of people who tell me how well I am handling the news about Gavin. I silently laugh to myself because little do they know how much I struggle with it daily...hourly...ok let's be honest every single second!!!

The first month was definitely the hardest. I couldn't even say the word Autism. I mean sure if I was speaking in generalities about the disorder then yes I was comfortable holding a conversation. However, when the moment came and I had to share with people that Gavin was on the spectrum...forget it....I lost it. Tears would well up in my eyes and I physically couldn't speak. To top it off most of the time I felt angry at myself for reacting this way. I mean I love my son!!! I didn't want anyone to think that I was crying out of disappointment, but more so I was hurting for him. My tears and emotions were for the difficulties that I knew would now lie ahead for him and for our family.

As Doug and I started to learn more and more about his diagnosis the more comfortable both of us became talking about the subject . We realized we needed to be Gavin's advocates; it's the only way he has fighting chance in the system. We want his therapists to know that we are aware of what he needs and will continue to fight until everything is in place for him. We are so lucky that everyone working on his team is fantastic!

So back to the perception that I am holding it together..I'm really not. A wonderful colleague of mine gave me great advice when we first received the news. He reminded me that it is human and ok to cry. He made a fantastic suggestion to make sure that I schedule time to get really mad and upset into my day. To read that, it probably sounds ridiculous...scheduling time to cry...but it actually works! A couple times a week when everyone else is asleep in my house I allow myself to break down, finally let go of everything that I have been holding in. I watch a sad movie, I read an article about a child with Autism that is doing amazing things, or I just think about the  new stresses in my life centered around Autism and I cry. It really is such a relief and I feel no shame.


I no longer go into the next day worried that I have so much built up emotion that I might break down at the drop of a hat or in this case at the word Autism. I'm sure there will be days that the stress of everything we are dealing with will become too much, but I really don't want to walk around being sad or pessimistic. I know that it is ok to feel frustrated by the cards that we were dealt to us, but the rest of my friends don't need to take on the stress. I want to be able to share with them what we are going through in a positive way or at least without having to sob through the entire story.

“if you tell yourself you feel fine, you will.”
― Jodi Picoult, My Sister's Keeper

Mama

He said it...Gavin said Mama!!!!! And he didn't just mumble the sound and say it in the normal babbling way that he has in the past. No, this time he reached for me and said ma-ma!!! Truly the best sound ever! I absolutely love that the last week I have been able to be home with my family and witness his progress. Most parents get to be excited about this moment so much earlier in a child's life, but I have waited 26 months to hear my beautiful baby boy speak my name. The moment was even better than I imagined. I can't explain the sheer joy I felt when I heard it and in actual reference to me. January 1, 2014 will be marked as the day he said mama and the start of what will hopefully be a better year for him. Here's to a Happy New Year Everyone!!!

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.