Avery Grace

Avery Grace

Sunday, August 31, 2008

Is this really my life?

Most of the time I would say that we are totally IN this life of ours. But sometimes, it all still seems so surreal. Kaylee is four months old now and her sweet and funny personality is really starting to shine through. It is like YESTERDAY that Avery was 14 months old, blowing us kisses, saying da da, ma ma, bye bye and a handful of other words. Before the storm hit. If we were IN the life I envisioned then, I would now be using this forum to display cute images, describe funny things Avery said, and brag on developmental milestones. It's what moms do, right? We can't help but be so proud of their every little achievement that we shout it from the mountaintops. We notice all the other babies around the same age and secretly compare how ours is matching up. When Avery first started her backwards slide, it would devastate me every time we were around her same aged peers. I wanted to scream... "WHAT THE HELL IS HAPPENING HERE!!!" It's getting better... but my heart still breaks just a little bit every time I am able to have a "conversation" with a two year old. I feel like those parents have no idea how miraculous that is.
So now I am in a new place with both of my girls. On one hand, I am loving the typical, blessed interactions I am having with Kaylee multiple times an hour, and on the other I am terrified to enjoy it too much because 1. it could slip away, and 2. it might mean that I am not fully accepting Avery for who she is and what she can do. Right before Kaylee was born, a few well meaning friends said "oh, don't you hope she is not like Avery?" This comment would TOTALLY piss me off and I would usually come back with something like... " I can only pray that this baby is half as neat, fun and special as Avery is."
What I am working hard to realize is that I can fully love and accept both of my children and learn to appreciate and be proud of who they each are individually. I gotta admit though, it's hard sometimes to be optimistic when you are running on a few hours of interrupted sleep because (and they don't tell you this in the "What to do now that your child has Autism" book I never received) your two year old still doesn't sleep through the night and your 4 month old still wakes to breastfeed every 2-4 hours!!! But I do recognize that each moment that I get to share with my girls is a gift, and I wouldn't trade my life with anyone, even with the heartaches and sleepless nights. It's a battle, but I know I am winning it. I will be a better, more complete woman, mother and survivor because of it.

Friday, August 22, 2008

Decisions decisions.

Today was one of those days that I had to keep repeating to myself... "be grateful for your many blessings, be grateful for your many blessings." Needless to say, it was a rough one! We should have known when the day started off and our dogs, Disco and Groovy, ran downstairs, knocked down the gate and Disco promptly urinated on the hardwood floor right by the door to go outside. Should have gone back to bed and called it a day. But we marched on. I won't go into too many details, just suffice it to say that I wish my biggest concern with my two year old right now was panties or pull-ups, (like many of her same aged peers who DON'T have Autism.) But as my mom pointed out, "that's just not the hand you were dealt." True enough. Aside from the no napping, fussy, almost kicked out of the grocery store kind of day that it was, we made it to 6:45 pm, (the time right now) and I am enjoying a glass of much deserved wine while Avery fights her way to sleep up in her room.
It is now about 15 hours since I wrote the above paragraph, and our night was much like our day yesterday as our kids took turns all night waking up crying. Today is a new day! Now, I am chugging some coffee and half watching Avery and Kaylee play in their respective corners of the family room. Sweet, sweet girls. Anyway, back to the point of my post. Making decisions for our children is so hard sometimes. We want to make wise,informed choices when it comes to shaping their futures, but being sure you are doing that is not always easy. I had our fall completely lined up for Avery with therapy and preschool jamming our days full. I got a call this week that a spot opened at a place in downtown Dallas that I have had her on the waiting list for since last January. That particular program meets Mondays through Thursdays for 2 hours each morning. The problem is... we can't do that, and the preschool we have already paid for (that is also great but not specifically designed for special needs kiddos,) and all of her other therapies. So now is the time to sit with pen and paper and weigh the pros and cons. The problem is, we don't know how she is going to respond to either program! Ughh. So, I realize now I am being a bit redundant and probably getting close to the edge of boring the crap out of you, so I will move on. Let's just all hope and pray we can be enlightened and stunningly aware as we create the format for which to heal and help Autism.

Tuesday, August 19, 2008

Sweet Success

After 12 months of bad news, failure after failure, and countless well meaning professionals telling me all that is wrong with my sweet daughter... finally... a nugget of good news. And yes, success is so much sweeter after all the bitterness. Avery is smart. Maybe not in the ways we are used to defining that term, but she knows things... lots of things. Getting her to show you what she knows on the other hand, is the really hard part. Avery's ABA therapist who has been working with her several hours a week for the last two months made the discovery that Avery knows ALL of her letters, both upper and lower case. She also can spell a few words like dog and hat, and can pick out some words in a book. I have known for months that Avery can point at dozens and dozens of pictures when asked, but this was a new one to me. We hadn't even worked on letters. Given that Avery doesn't regularly wave bye bye or say much of anything, it wasn't a skill I thought she had the ability to attain. Sometimes I love it when I am wrong. So now what. Great right? But she still can't communicate well or relate to others. Well... I'll tell you why I think this is good, if not magnificient news.
If you use wikipedia and look up "autism" you will find a massive amount of information... some of which talks about HFA, and LFA (high functioning Autism and Low functioning Autism.) You will see lots of discouraging statistics describing poor outcomes, poor quality of life, etc etc. What you will also see, is that the individuals who fare better as they struggle through our would with the unfair diagnosis of Autism, are those who have a higher IQ (HFA). You can't teach IQ. So, this discovery carries with it so much hope and erases a few of the many fears of the unknown. We have no idea what the future holds for us and for our precious little girl. I always say this journey we have started to tread has become the greatest lesson of all in patience and in living for today. I am coming along in my personal acceptance and reminding myself by the moment to look at each day as a blessing. If I start to project on what could happen with Avery's mastocytosis or what "might be" with Avery's Autism, I literally lose my breath I get so anxious and overwhelmed. So... hip hip horray for today. Today I am certain that there is so much locked away in Avery's brain for us to discover. I wait with wonder at what we will find out next.

Sunday, August 10, 2008

Would You Rather?

When I was a child, I played a game with my friends called "would you rather." Basically, it was a question game used to illicit conversation on long car rides or late nights in college drinking with my buddies. Ususally, we would pose two undesirable options, then talk about why we would chose one over the other... for instance, "would you rather go deaf or go blind?" When I was working full time in the field, I remember having similar conversations with my co-workers. Only this time, it involved things like "would you rather have a caseload full of kids on the Autism spectrum, or a caseload full of down syndrome kiddos?
Now that my own child is on the Autism Spectrum, I have thought back to such conversations, and have even heard my own husband make comments like "at least we never had any fertility problems," or "at least she is happy and mild mannered unlike kids who are always misbehaving." It's an interesting thing to think about, really. Everyone has "stuff" in their lives that didn't work out the way they had planned. But what if an alternative was given? Would they "rather" have had a different circumstance, even if it was another crappy deal? Would I have "rather" had a child with another disability... and why?? Last weekend we were a a birthday party at chuck-e-cheese. I'm not a big fan of birthday parties these days... like stabs to the heart sometimes... but that's for another blog. Anyway, at this party there was a little girl there who was a month older than Avery. She had down syndrome, but was able to point at Kaylee and say "baby," clap and dance with the other kids during the show, etc etc. All things that Avery cannot yet do. I left there with tears in my eyes, wanting so much for Avery to be able to enjoy the party as much as the other kids by participating/ joining in on the fun. My husband, forever the optimist, quickly chimed in that "Avery had a great time! She climbed and rode rides and watched all the lights and action. It was fun for her!" There are always two ways to think about things. Kudos to my hubby for recognizing the good in what I was seeing as a crummy situation. Besides, she'll get there... I know she will. I heard a neat quote the other day. "All kids are gifted. Some just open their packages sooner than others!" I love this.
With Autism, children have a really hard time relating to others. This impairs social reciprocity and communication. Sometimes, it can make a parent feel very alone... even if they spend all of their time with their child. I have blogged about this before... about the wonderous "moments" where I really connect with Avery. Those moments fill my soul and envelop me with happiness. I think I am able to cherish and appreciate them so much BECAUSE of her disability. I am also able to celebrate the smallest of feats, and really notice every detail of how my child's mind and body works... or doesn't work. Avery is actually pretty smart sometimes. She is a puzzle wizard, can match and point out tons of pictures and sort all kids of things when she's in the mood to cooperate. It's fascinating.
So what's the answer. What would I "rather" have? The answer is that it's a stupid question. We get what we get and we have the choice to make the most of it or wallow in our self pity. OF COURSE I would rather have my house burn down and lose all my worldly possessions... but that's not an option. EVERYBODY has some shit in their lives they don't like, it is how we handle it that shapes our character and determines the end of the story. We don't know how our book ends yet. In fact, we are just in the prelude. I am sure with each chapter their will be heartache and bliss, and I know that I am privileged and blessed to get to be a part of the story.

Monday, August 4, 2008


It's to coincidental to be a coincidence. When I was nine, I worked in the church nursery at my parent's methodist church. I loved babies. ALL I wanted to do was hold them and play with them. It was a small church, so everyone knew me and trusted me even if there was no adult there to supervise. I babysat too. For anyone who would let me. My neighbor, had a special needs little boy who loved me ( and whom I adored as well), and she even trusted me at the ripe old age of 11 with her 9 week old baby. Now that I have kids of my own... I think she must have been half crazy. I babysat my way through high school and college, then decided to get a Masters degree in Developmental Psychology with a focus on ECD... Early Childhood Disorders. It was in grad school that I learned all about Autism. I even took a course titled "Autism." Then as part of my practicum work, I began working with kids on the Autism Spectrum. They were always my favorite and also the most challenging. So hard to reach, but with such great potential. Then working for the State funded agency I still contract through, I was often given the "quirky" kids as they were my "thing," my niche if you will.... then right before I got pregnant with Avery, I signed up to get certified in RDI, which is short for Relationship Development Intervention... also a therapy only for kids with Autism Spectrum Disorders. Little did I know how costly and long that process would be, but I am now one assignment (my final) away from being fully certified.
All the roads led me to be Avery's mom. I guess God was preparing me to be the best mother I could be for her. I think he knew I couldn't handle it otherwise. I am still not sure I can some days. It's hard not to think back to when I was pregnant and would pray for a "neurotypical" child. Really, I couldn't have been more specific. It's not that I think my prayers weren't answered, I guess they were just answered "NO." For whatever reason, this is my path, and I am certain I will end up better and more fulfilled because of it. It will make me stronger, right? A warrior. In my journey over the years, I have encountered countless warrior mothers and precious children who have always made great progress. Now it's my turn. It is drastically different being on this side of things, but I am as qualified as any I suppose. More so in many ways. I just hope and pray to make wise choices for my daughter, and start each day with hope in my heart and love in my soul.... oh, and a little more patience would be nice too.

Friday, August 1, 2008

Drumroll Please!

It's Friday! I am going to try to post each week, but I'm not making any promises. Many of you have asked about the results from Avery's EEG, and, naturally, they are "inconclusive" so we are supposed to go BACK in for a 24 hour study to monitor her for a full day. Imagine any 2 year old, less well one with Autism, hooked up to a machine BY HER HEAD for 24 hours. Needless to say, Bryan and I want to put this off as long as possible! The whole purpose for the EEG in the first place is to rule out a seizure disorder, and to see if/when Avery is having seizures in her sleep. About 1/3 of children with Autism will have a seizure at one time or another, and Bryan has witnessed Avery "trembling" one more than one occasion when he checks on her at night. Anyway... just one more thing to look into.
To focus on the positive for this week... Avery is making some progress in her therapies! I always hesitate to even whisper this, since it seems each celebration for a new skill or breakthrough is followed at some point or another by the loss of the skill during a regressive period. However, I am choosing to look at each day as it's own and today, things are looking a bit brighter. Avery even wandered the house this afternoon during a session saying "ma ma" when I had gone upstairs to put the baby down for a nap. This is about the 4th time we have added ma ma to the short list of words... hopefully this time we won't have to scratch it off again. I know I know... where did the "living for the moment" go! Sorry.
Also good news is that Kaylee continues to be such a happy, easy baby. She only cries to nurse or nap... and today has fallen asleep twice on her own while playing on her playmat. She is now refusing a paci... which is okay I guess, and is starting to roll a bit. Fun stuff. I actually think in many ways I need her... she evens me out a bit, and makes me a better mother, much like her sister does in a totally different way. Sometimes I am a bit sad as I watch Kaylee gaze lovingly in my eyes and coo back and forth... as Avery did all of these same things at one time before we lost much of her to Autism. But I'll take it. I will wrap it up and cherish it... just as I have every moment I get to connect with Avery.
I attached a few new Kaylee pictures so we can watch her grow. They change so much in this first year. I can't believe she just turned 3 months old!