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Although it is hard to leave my old blogger account that I have had over 10 years, I think it's time to move to a more modern format. Follow my journey at my new website: www.salt127.wordpress.com. 

Autism Awareness Month - Light It Up Blue

A year ago, on April 1, 2014, I let my guard down and allowed everyone in my social network to have a glimpse into our life with Autism. I had been uneasy about putting anything on social media. There were already people who knew he was diagnosed, because they were family, friends, or co-workers, who would consistently tell me Gavin didn't have Autism. I kept thinking I couldn’t handle it if I revealed his diagnosis and then was hit with endless comments about how he was fine. I have to say though, reaching out to everyone last year was one of the best decisions I ever made; in many ways it made me stronger. In the last year I have found so much support and love from friends near and far. I have found our Altenburger cheerleaders; I found Gavin's fan club!

Certainly there are still people out there who provide their two cents on his diagnosis and there are people who judge us for talking openly about him through my blog. I continue to have people tell me he doesn't look like he has Autism, that we are over exaggerating his delays, or that he's just behind because he is a boy. Nevertheless, I am stronger now than I was a year ago and I have been able to ignore their toxic comments. The list of people that are not accepting of his diagnosis is a small group.  Conversely, the number of people that continue to cheer on Gavin and our family is extremely large and those are the individuals I choose to focus on and listen to daily. I am an advocate for Gavin and our long list of cheerleaders/supporters are mine and Doug’s advocates!

To know Gavin is to fall instantly in love with an amazing little boy. Sure that blonde spiky hair and sparkling blue eyes pull you in first, but it's his amazing heart, compassion, and thirst for knowledge that makes people instantly adore him.  I know this to be true from the tears his therapists shed when they said good-bye to him in November. To the e-mail we received from his preschool teachers on his first day of school which said, "We wanted you to know we have already fallen in love with your little guy!”

A year ago I was hopeful that one day I would hear my son's voice. He had a limited vocabulary at this point and was still considered non-verbal. People would tell me to be careful what I wished for, because once he starts talking he'll never stop! That wasn't funny to me though. Didn't they understand that's what I wanted?  Sitting with my 2.5 year old son, I would watch other kids tell their parents they loved them. I yearned for that same affection to be said to me, never knowing when that day would come. It's a privilege to say now that I am lucky enough to hear Gavin tell me every day, "I love you, mama!” 

This year started another chapter for Doug and I in the world of Autism, that we did not experience in our first year. When Gavin started preschool he was placed in an Autism exclusive classroom. This was our first experience seeing other children who were on the spectrum. In one of my earlier blogs I wrote a post about how I was told each child with Autism is different. I couldn't believe how true this statement actually was until we met Gavin's classmates.

There are general similarities, which I am sure is how each of them received the diagnosis, but there are such varying degrees of each of the personalities in his classroom. I remember arriving to pick him up the first week and seeing one of his classmates argue with his father about why he didn't bring the stroller. His speech was so clear, so perfect, I spent a moment wishing that was Gavin.

Then in that same encounter, I met another classmate of Gavin's. I saw a young boy who was almost completely non-verbal. He does not say much and has been in the classroom for two and a half years. He makes sounds, gestures, and can read, but has very limited words. My wish above for Gavin to be more like the first child  made me realize how grateful I should be for where he was at. It left me feeling guilty for comparing him to another child rather than being proud of all that he had accomplished thus far. I thought to myself that the second child's parents would probably welcome the limited speech Gavin had in their son.

Parenting in the Autism world is hard. You want to be happy for your child's achievements because they take a lot of work and effort to get there. However, I personally often feel sad, when I see other parents working just as hard and they aren't receiving the same results with their son or daughter. I have to try and not get lost in that sadness though and remain excited for all of the great things Gavin is doing. Special needs parenting is a lifestyle. It's certainly not a lifestyle we chose for ourselves, but it's one we have adapted to and will continue to adapt to for the rest of our lives.

It is once again Autism Awareness Month and I want to thank our HUGE support team. We couldn't do what we do without your love and support. A simple "great job" or "hang in there" goes a lot further than you may realize. Today we are "lighting it up blue" in hopes of bringing more awareness to this topic, but most importantly we do it to show our love for Gavin! #GavinsGang

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