Giving Up is Not an Option

As parents, we have a responsibility to do what's right for our children. To never accept no as an answer if there is something that they need to be successful. We need to remove all roadblocks and create the best path for them.

A little over a month ago Doug and I attended a meeting at a daycare facility that we hoped to enroll Gavin in. Unfortunately, during that meeting we learned that the facility did not think they had enough staff to adequately support him. We left there frustrated, discouraged, and without a plan b. We knew we had to quickly come up with something else for him.

However, after a night of sleeping on it Doug and I realized that up until this point we have not allowed anyone to tell us no when it came to our kids and we weren't about to start now. We knew the best option for Gavin would be to attend this facility and we planned to do everything we could to make sure it happened.

After consultation with a few other people, we politely requested the application materials, as if a negative comment was never made about him attending the facility. We also expressed our excitement about him visiting the center soon for an intake evaluation. Perfectly phrased in writing knowing full and well that they would either realize that they could not actually turn him away based on a disability or to our advantage we would have something in writing saying they couldn't support him and we would have our evidence for an appeal.

After a week, since we sent the e-mail, we finally received the application materials and an invitation for them to evaluate Gavin. No other child at this facility would require an evaluation, but we played along nicely. We accomplished our first goal of getting the applications so we decided we wouldn't object to the evaluation. We could always use it later in our defense if he wasn't offered a spot; this isn't the protocol that they extend to every other applicant. I knew we were walking a fine line of being an advocate and not looking overbearing in the event he did receive a placement.

We finally scheduled his evaluation for a little over a week ago. Doug and I came prepared that day with our defense and sat close by taking copious notes on how he performed during the screening. We watched with excitement; he did better than we could have even imagined! He tried new toys, stayed with activities for more than 15 minutes,  and parallel played with other children. He transitioned smoothly from one teacher to another and only had one minor meltdown. The staff was complimenting us on his language, his willingness to play, and his overall temperament; I know that I had to be smiling from ear to ear. At the end of the hour the director came to us and said she couldn't see a reason why they wouldn't be able to welcome in to their care. He did it! He got in and on his own merits! We couldn't be more proud!

This process has made me realize more than ever why it is important that Doug and I advocate for both Kendall and Gavin. It would have been easy, after that first meeting, to walk away, devise another plan, and never try to enroll him at this facility. However, we knew better; we knew he could be successful. and we knew that telling us no was wrong and against all procedures they had in place. I was very scared the entire time of becoming an enemy of the facility while trying to advocate for him, but I personally feel we managed this challenge as diplomatically as possible.

I'm not foolish enough to believe that every fight will end this easily and peacefully. However, I'm still inspired more than ever to fight for what is right. A month ago I felt so discouraged by their response, but now he is enrolled and will be starting in July. Our belief in Gavin is what aided him in getting this opportunity. His development and growth is what earned him the spot.

Hello My Name is Autism

I have been riding high on positivity for the last month and a half. Gavin has been doing incredibly well since he started school. His growth in just two short months has been incredible. I had a lot of fears about sending him to school, because he had never been away from our home; I really didn't know how he would handle a social setting. The first day I dropped him off he gave me a quick hug and ran in the classroom. We have only had one day where he didn't want to go in with his teacher, but the rest of the time he can't wait to check his schedule for the day.

Doug and I have been the best advocates we can be for Gavin since the day he was diagnosed. We made sure he received the maximum hours he could from all of his service providers and we pushed to keep his IEP on track in order for him to not face too much regression after his third birthday. Through all of these battles I never felt like anyone was out to get us it was just a process of us knowing our rights and learning the system.

Recently though I have been faced with what I feel is discrimination towards Gavin and our family. We typically have Gavin come home after school and stay with a babysitter. Every girl we have hired has been lovely, but they are all college students and their schedules change each semester. It feels like I am on constant nanny search and he thrives on routine so the consistent change for him is not healthy either. Doug and spent a lot of time talking about it, and although it will make our monthly expenses go up, we decided that enrolling him in a summer daycare and after school daycare would be the best situation for him going forward.

However, our first to attempt to enroll him in a daycare facility quickly made us realize this was not going to be an easy process. We are not shy about sharing Gavin's diagnosis with anyone that has to work with him, because the fact is he has Autism and he functions differently than other kids. Unfortunately, we have come to the realization that this is a red flag to others though. Our excitement about this new chapter for all of us has quickly turned into a fight we weren't expecting to have for him. We weren't prepared for people to not see Gavin for the adorable, strong-willed little boy that he is. Instead we were presented with people who only see Gavin as a label, and with that brings fear and rejection.

Gavin is being put through screenings at this particular facility that other students do not have to go through. We received a speech from the director of the program, in our initial meeting, about her concern for staffing to meet his needs. This was during the off moments when she wasn't trying to offer us a plethora of other options that we should consider outside of her program.

A year and a half ago Gavin was supposed enroll in a daycare, but we knew it was too risky for him and we knew it wasn't fair to the staff to have to watch over him based on where he was developmentally. We made the difficult decision to pull him from that environment and have never regretted that arrangement because we still believe that where Gavin was at the time, developmentally, would not have allowed him to be successful.

Doug and I would never put our children into a situation just to make our lives easier; we will always do what is best for Gavin which is what makes them questioning his eligibility so frustrating. He is not where he was a year and half ago; not by a long shot. Gavin can now speak in partial sentences (exciting right!! :)), he knows his own name, he plays well with others, and he thrives social settings with activities and group time. We have not made any requests for extra staffing to be with him, nor do we think he needs that type of support. We recognize that he is very fortunate to have low ratios in his current school setting, but his teachers and administrators are already talking to us about moving him to an inclusive classroom; which would change his student to teacher ratio dramatically. Since his parents and teachers believe he can function in that type of setting it would be nice to see him afforded the same admission standards as a typical functioning (or label free) child.

I know what you’re thinking. Why even fight to have him at a place that doesn't want him? Well there are several reasons, but the three most important are proximity to our house and work, the hours they are open, and we really value the structure of this particular program.  In addition, it's just not right what they are doing, and and we are fighting for Gavin and any future special needs children that want to attend this facility. So now we must figure out the delicate balance of fighting for what is right and unjust in the situation and partnering that with the fact we still want him to receive excellent care at the facility and not be the targeted outcast. 

Gavin is so much more to us and to numerous others than that label.  He is an amazing little boy. Anyone that has the pleasure of getting to know him learns that very quickly. His giggle, his heart, his smile, his determination are just a few of his incredible strengths. He has struggles and accomplishments just like any other child. And just like every other child, we want him to be treated like any other fairly. Not like a label.

The Quirky Princess

My blog for the last year and a half has focused mainly on Gavin. Today though, I'm going to tell the story of my beautiful quirky princess, Kendall.

Four years ago I thought, without question, that Kendall was demonstrating red flags on the Autism spectrum. I remember clearly, the frustrating weeks that were ahead, mostly because no one believed me.  I felt like I was fighting the battle alone. According to several Autism websites, she met the following red flags:

• Delayed or no speech
• Walked on her tiptoes
• Waved her arms in the air; flapped her hands
• Limited Food Options
• Did not point or respond to pointing
• Played with toys the same way every time (repetitive play)

Her pediatrician reassured me time and time again that she was fine. She told me she saw where I was coming from, but Kendall was way too social, even with a limited vocabulary, to be considered for the Autism spectrum.  Slowly she started to gain speech through her Early Intervention program and I had to let go of the idea that she could have Autism. I knew people thought that I was crazy and I started to believe that I was as well. 

Fast forward to 2013, after we received Gavin's diagnosis. I threw myself into every book, article, video, etc., that I could find on the topic. However the more I read, the more I started remembering everything that I thought about Kendall when she was 2 years old. Oddly enough, many of the new things that I was reading  highlighted new red flags for four year old Kendall. Every time I came across these similarities I would share them with Doug and we both agreed that this wasn't our own paranoia or our lack of sleep with Gavin's diagnosis. This was something larger and we needed to talk to her pediatrician about it again. We both agreed we would never forgive ourselves if we ignored her needs because we had been so focused on Gavin.  

We signed Kendall up for the same three part evaluation that Gavin went through, but this time we didn't tell anyone. We already knew what the majority of people would say, which was that we were crazy to think that Kendall could be on the spectrum. I know this is true, because it was all I heard when I had these same doubts two and half years prior.  It's all I still hear about Gavin from several individuals. People continuously tell me he doesn't look like he could have Autism. I still haven't figured out what exactly a person with Autism should look like, but I didn't need more judgement.

I'm sure many of you are reading this now and are wondering how in the world could we think she has Autism. And after a visit to our developmental pediatrician we learned that she did not meet all of the criteria for an official diagnosis. However, what we did learn  shocked both of us. 

Kendall's developmental pediatrician told us that she did not qualify for an Autism diagnosis for one reason and one reason only, her empathy. Most kids on the spectrum do not have the ability to connect with individuals through empathy. Kendall however is off the charts when it comes to compassion. Despite this great news, we were quickly brought back to reality with a hard to hear statement. Her pediatrician told us very clearly that Kendall scored poorly in several other areas and if she didn't have such a high empathy score she would have been diagnosed with Asperger’s Syndrome.

She applauded us on being proactive parents by bringing her in and acknowledged that many of our concerns were accurate. She continued to talk and I drifted away to a place even further away than I did when we received Gavin’s diagnosis. I was prepared for Gavin’s news. I knew that his was coming, but I had been told for three years that I was just crazy about Kendall. I wanted to believe so badly that everyone else was right. However, to hear that she was border line for Asperger’s shocked me, even though I was the one that insisted on the testing. Since Kendall did not meet all of the criteria for an Asperger's diagnosis her pediatrician instead gave her a diagnosis as a "Quirky Kid". 

Plans of sending Kendall to our local Catholic school were suddenly changing as her doctor continued to list off the services she wanted Kendall to be evaluated for with the public school district. The letters IEP were now becoming a much more common phrase in our home then I was prepared to handle. However, we knew we had to do what was best for her; it was the reason we were there in the first place.


So we moved one block away to a significantly smaller apartment in Brookline, MA, this past August. We did all of this just to receive better services for both of our kids in an amazing school district, and yes, it is literally one block away! 

Today we had our second IEP meeting within a week, this time for Kendall. Once again we were reading through multiple page of reports filled with clinical language. Every clinician noted how sweet and engaging Kendall was during the testing which was wonderful to see. What was not so wonderful though was reading all of the concerns they saw for Kendall. 

I haven't blogged about Gavin's IEP because it was hard to process. I felt really beat up after the meeting and I didn't know how to put everything into words. Hearing over and over again about all of your child's weaknesses and how far behind they are from their typical peers is not easy to go through. To experience it again a week later for our other child was not any easier, if anything it was somehow more difficult. I know that we are doing everything we can for both of them to be successful, but it is so hard to sit through meetings that focus on so much negative. 

Despite all of this though, we are lucky. Both of the kids will be receiving services. They will both be receiving the tools they need to be successful. The road to getting them there has not been an easy one and the actual logistics of getting both of them to their schools is adding another curve-ball to our day to day routine but, Doug and I keep pushing through. However, if we are being honest there are days that can be both emotionally and physically draining.

We absolutely love our two quirky kids for all that they are and all that we know they can become with our love and support. However, if I had one wish for them it would be that neither one of them ever had to struggle. I wish that life could just be easy for them, and I worry that this will always be their normal.

There are hurdles, there are handicaps, hardships you have to face in life, but you hope for a great future. -Anil Kapoor

Thank you

On Saturday, November 1st, my beautiful little boy, Gavin, will turn three. A typical parent response would be pure bliss to celebrate the arrival of another birthday for their child. However, I'm struggling with a lot of emotions right now. The unknown of what turning three means for Gavin makes it difficult to be completely excited.

On Friday, October 31, 2014 at 4:30pm all of his current services will end; he will age out of the program. Our extended family of therapists will close the door to our apartment one last time. Sadly, Gavin will wave goodbye out his window, per his normal routine, but will not understand that these individuals who have had such a large impact on his life are now gone and will not be returning for any more visits.

A thank you just doesn't seem like enough for this team of amazing individuals and goodbye seems incredibly hard to say. This team took Gavin from place of being locked inside his own head with no way to communicate,  to a boy who now screams "Yea Mama!" every time I return home from work. He has always been an outstanding little boy, but because of them the world now has a chance to know what he can accomplish with the assistance of therapy.

What they have demonstrated in a year is the ability to illustrate, to everyone outside of our family, that Gavin does matter. Autism should not define him. He has been successful because he knows that Doug and I believe in him, but also that his team believes in him. They never quit on him and they never let him quit on himself! They didn't focus on all of the things Gavin couldn't do, but instead invested time into all the things they knew he could achieve. They consistently applauded all of his accomplishments big or small. They have been his champions, his cheerleaders, his voice and his advocates.

I didn't have a plan to learn about the world of special education or special needs children, that path was decided for me. However, his team chose this line of work. They wanted to have the ability to unlock a child's potential and they were successful with that goal with Gavin; they literally gave him a voice.

So thank you, Gavin's team. Thank you for setting attainable goals for him. Thank you for not leaving when he hit you, kicked you, or screamed at you out of frustration. Thank you for teaching our family sign language and demonstrating the abilities he can have to communicate through communication boards. Thank you for being excited that he picked on another student at group because it showed progress in social skills!

Thank you for always being positive in what could have been a very dark year for us. Your team's drive to never give up on him or our family was our push to find strength and positivity in every situation.

I pray that our communication together does not end on Friday. You truly have become an extension of our family. You are incredibly wonderful individuals. I am forever grateful for the work you have done to help Gavin find his place in this world.

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.