Avery Grace

Avery Grace

Monday, August 31, 2009

It couldn't have happened to a better person.

Most of you who are regular readers, or who know us well, know that when Avery was 16 months old things were just beginning to go awry. She was still holding on to some developmental skills, but slowly we were beginning to realize that she was not moving in the direction she should, and that she was not going to BE the child we thought she was. Who knew how the child she HAS become and is becoming would be so instrumental in our own personal growth, healthy perspective and understanding of unconditional love.

Same old story... only NOW we get to experience parenthood from a whole new perspective. Like those of you who are blessed to have one boy and one girl, and to experience the vast innate differences each gender sets forth, we too are blessed to have one sweet, yet neurologically impaired child, and one sorta sweet, feisty, albeit typically developing toddler. We aren't over the hump of worry yet... I think until Kaylin is 2 and half and hasn't shown any sort of regression I will continue to have a lump in my throat... but for now (fingers crossed, knock on wood) she is doing just fine.

But what most of you won't understand is that even if she wasn't, I would still consider myself doubly blessed. You see, the gift of time, love, heartache, and simple joy has enabled me to really "get" what is important. YES... it is incredibly important to me that my children function at their best, BUT, if Kaylin's best were similar to Avery's best, I know that in time, that would be okay too. Most important are the tender moments we share. The simple connections we make and the love we can express in whatever way possible. Avery SHOWS me she loves me in several ways, while Kaylin can just happen to tell me so.

Now I am finally able to see what many of my friends experienced with their first children... which involves the joy of spontaneous language, not having to "teach" a baby to use a spoon and fork... (they just pick it up), kids who understand what you are saying, and who can follow directions. I remember hearing friends talk about the funny things their kids said and feeling my eyes well up with tears... but now Kaylin says funny things and I realize the vast importance of celebrating what each of our kids CAN do. It's all about how you look at it.

Regardless, one thing I was thinking about today is how when Avery was first diagnosed with Autism and Mastocytosis, SEVERAL people made comments about how it couldn't have happened to a better mom. At the time, I would politely smile and socially I understood... but I still wanted to kick them in the shin. (sorry if you are someone who once said this to me!) Afterall... I was an autism "expert" (bullshit unless you have a child with Autism, but before I had one I thought I knew it all), and I had the "training" (again, bullshit) to handle this. I was so wrapped up in the sadness and desperation of it all that I was way to raw and bitter to see that maybe, just maybe these well meaning bastards knew what they were talking about. Now, almost two years later, I am beginning to understand. Avery may be lucky to have me as her mom because I will love, research, fight, sweat, bleed and cry for her in anyway I can.... but I am the really lucky one.

Like I said before.... we "get" the gift of having two very different, yet very challenging and even more rewarding kids. Our challenges may be different from yours, and seemingly simple things may be mountains to us... but we get to travel this road while being inspired by one very special, very disabled little girl. We get to reveal her unique gifts and unknown potential, and we can do so with smiles on our faces. Sure, sometimes I still have moments of "WHY AVERY??!!" but those moments are less and less, and while I know life may not be as "easy" for us, I can sit back and relish in the fact that my adorable daughter has had an impact beyond measure... not only on my heart, but on many. I have no doubt that her impact will continue to ricochet as her precious life continues.

Monday, August 24, 2009

Another new start

Today was the first day that the Frisco Early Childhood School opened it's doors to serve our community of young children with special needs. Avery was part of this momentous first day, and we are elated that she has the same wonderful teacher that she started with last year, and is in a very small class of 4 (she is the only girl) with her special ed teacher and 2 assistant teachers. As part of her day, she will get speech therapy, occupational therapy, physical therapy, music therapy and behavior therapy. Her first day report was great, and I am hopeful and excited for a terrific year. The brand new school is really state of the art, with excellent playgrounds and motor labs, and we feel very fortunate that Avery will be a part of such an important program within our school district. The hardest part of the day was after dropoff when Kaylin yelled "Avery Avery Avery" the whole, lonesome, ride home... wondering where her beloved sister was. She will adjust along with the rest of us, but it sure was sweet to know that she missed her.

We had a very fun filled summer and Avery is finally on an upward trend with her progress. Her teacher noted some significant gains and we have every reason to believe that she will continue to make strides in the right direction... but given the fickle nature of Autism, we can be assured that there will always be a few bumps in the road and unexpected regressions. Regardless, we are extraordinarily proud of her and her daily fight to feel good and connect with the world around her. Almost every moment of every day Avery teaches me something new and spectacular, and I remain forever grateful for the amazing impact my little, sweet, loving and very disabled girl has on my heart and soul.

Thursday, August 13, 2009

Embracing the chaos

"Welcome to the club that nobody really wants to belong to." Those were some of the first replies back I got when I joined a few online support groups for families impacted by Autism, and then later, when I joined groups online connecting those of us impacted by systemic mastocytosis. I remember laughing it off a bit, and trying to roll with the punches... but in those first few months when you KNOW something is WRONG with your baby, your first baby, and thereby, the love of your life.... rolling out of bed was hard enough, and I could barely stomach rolling with the punches.

Realizing I was part of this dreaded club... the "crazed mother of a sick and disabled child club" initially made me want to vomit. And even though I knew better, I still went through the same grief pattern as everyone else, including denial, bargaining, anger, sadness and so on. I have written before about what "acceptance" really means to me, and how that applies to our circumstances as they are today, but one thing I don't think people truly "Get" is that within this roller coaster ride, the grief keeps coming as the depth of your child's disability continues to reveal itself over time. For example, Even though it has almost been two years since I realized Avery diagnosis, I never imagined that today she would still be unable to master skills she easily performed as a 9 to 12 month old. I never dreamed she would still be non-verbal, and no where near being able to be toilet trained, and unable to jump, coordinate stairs and even curbs with ease and so on. So even though I "knew then" there were still so many unknowns as there still are today.

One of these "downer" realizations occured to me last week when I was able to see that she really can't hack it in a typical preschool anymore... even with a full time shadow. Well, that's not fair, she can hack it, but she is turning more inward as the kids become more different from her. So, again, I was pretty overwhelmed with sadness because my sweet baby girl can't go to the preschool I wanted her at.... the one I picked out long before she was even born as I was working as a developmental therapist in the field. It was just one more blow. But don't get me wrong... I know that in the big picture that this is just one little bump in the road, but trust me, I agonize about the big things too. The realization that we will likely have to help Avery for our whole lives. I won't even go into the stress I feel when I consider her life without me and Bryan. Another big one is when I ponder that, given the nature and complexity of Autism, Avery may never know empathy, or compassion, or how her sweet disposition and even how her disablity itself has forever changed me for the better. I want so badly for her to know and understand the immense and forever love that Bryan and I have for her. So we will just keep trying to show her.

My point is... I thought by now this would be easier. That we would have the hang of having a child with very special needs. Unfortunately, it doesn't seem like we ever will. But I will tell you this, we are better than we were. We are becoming experts in treatment options, latest research, medical breakthroughs and begging God for some relief. We can be open and honest about Avery's deficits and about her angelic presence in our hearts and souls. We can share our story, and listen to others as they walk their own journey. And we can love her. We can love her with every ounce of our beings and know that within that love, she will feel whole.

Tuesday, August 4, 2009

Fingers Crossed

Most of the time I am able to add to this website when Kaylin is sleeping in the afternoons, or when Avery is at school, or when the kids and Bryan have long been snoozing, but lately, we haven't had a whole lot of down time. Avery is in school less for the summer, and when Kaylin naps, Avery and I have been able to share some quality time together. Additionally, we have begun a new treatment for Avery that takes up about 2 more hours a day... on top of ABA, RDI, Speech, PT, Neurofeedback, biomedical supplements and medications. I have been hesitant to even write about it, but now that we are 14 sessions in... I want to share with you some of the "why's" and "what's."

At the urging of our immunologist, and following countless hours of research, we rented a Mild Hyperbaric Oxygen Chamber for the month. Shortened as HBOT, we decided to try it given the latest double blind studies published earlier this year regarding it's effectiveness in treating some of the symptoms of autoimmune diseases and Autism. Here is the idea: (specific to Avery). When your body has an autoimmune disease, one of the unpleasant side effects of this is brain inflammation. For Avery, her body produces too many mast cells, cells responsible for producing histamine in allergic reactions, hives, and inflammation in your organs, namely, the skin, GI system, bone marrow and brain. Inflammation of the brain results in a lack of oxygen reaching various parts of the brain, impacting connectivity and all functions of the brain from physical, emotional, language, immunity ect. What HBOT does is put the body in a position (through pressure similar to being 12 feet underwater) to which it can soak up the oxygen being pumped into the chamber, thereby improving blood-flow and cellular function. HBOT is often used in hospital settings following surgical procedures and injuries to speed healing and reduce inflammation. Lately, it has been used for many children with Autism, yielding promising results... even from government funded studies.

So, Avery has done 14 "dives" so far, mostly with me, a few times with Bryan and we are already seeing some really fantastic changes. Initially, she was a little more "stimmy." She was walking WAY up on her tip-toes and mouthing everything in sight. Right away she was making more noise. Her eye contact is improved, and for the first time in her short life, she is able to run. To really run. Her motor skills have been so shaky, and her apraxia so severe, I was beginning to question whether she would ever have the balance and coordination ready to master this skill. I attribute this jump in progress to HBOT. Additionally, Avery's receptive skills are noticeable improved, and today she said FIVE, yes, count em, FIVE words! Also today, I asked her to "get Diego" and she brought me not one, but TWO diego dolls that were on the other side of the room. For those of you who know Avery... you know this is HUGE for her.

So, as you can see I am really pumped up about this. I wasn't born yesterday, and I am not expecting miracles, but already I would say this treatment has been worth every penny. Everyday I read more testimonials, and today I was reading scientific animal studies showing HBOT reducing mast cells in mice and rabbits. If we continue to see the rate of progress we have seen so far we will do whatever we have to to to actually purchase one of these machines. I don't care if we have to take a second mortgage out on our home. This really could be THE thing that helps Avery be all she can be. I am so elated to be with her on this journey, and to witness with patience and perseverance her coming back to us.... little at a time.