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.

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!!!