Perspective to reality

When I was a kid, and still to this day, my mother has a saying framed in her house on "attitude." I can't remember exactly what it said, but the premise is that we can choose to have a good attitude. Pretty simple really, but harder than it seems when the going gets tough. I think about this quite a bit, and about how to really change my perspective when examining my reality. This involves more than a shift in attitude, but an entirely new way of looking at what really matters, and what life is really all about. It's not about 'what other people think' or material things or even accomplishments. It's also not about what we "can't do." I have to re-focus on relationships as being my # 1 priority. But here's the kicker. My child has a REALLY hard time "relating" to anyone. She does better with me and her Dad than anyone else, but for the most part, avoids interaction at all costs. So now what? Now is when I change my perspective. Here is how it works: she's different... and that makes her unique! She doesn't look at us too much, but when she does, the light in her eyes is glorious. She flaps her arms when she is happy... so she can express emotion! How wonderful is that! She is a picky eater... but she doesn't complain! She can't talk yet... so we don't have to deal with talking back! and so on. There is always a positive side... sometimes we have to hunt for it, and in some circumstances we may not know for years or even decades what it is... but just knowing that it is there is what makes each day so beautiful. To some extent, we really can choose how to react to and think about things. Sure, we all grieve for the "what could have been" but I am choosing to celebrate what "is now." Right now, Avery is happy. She loves birds, airplanes, trees with moving leaves, swings, little people, ANY penguin, trains, music and going bye bye. She is here with us, and I can choose to enjoy her, (while also working tirelessly to help her) or I could choose to live in self pity and anger, constantly looking and thinking about what she can't do yet. So, I celebrate the ability in her disability. Am I "happy" that Avery has TWO debilitating conditions (Autism and Mastocytosis)... of course not. I hate it, and I will admit that several times during the day I have to take a deep breath and snap myself back into positive thinking mode. But, today is all we have... so why not make the most of it. (and all this coming after a weekend spent with typical children!) Wow, how far we've come... and it's only just begun.

My two little pumpkins!

Enjoying each day.

Fall has officially and finally arrived here in Frisco. We are as busy as ever, but trying to remember to take out time in each day to enjoy special moments with each other. Avery is making some progress, especially at her preschool where we are so fortunate to have two loving teachers and one incredibly special shadow helping out our sweet girl as she learns how to be a part of the class. Regardless of the "why's?" that we all have when life doesn't go our way, we are certainly blessed and grateful for the friends, family and amazing therapists who bring us so much hope, love and support. I have more to write about later, but wanted to post some pictures in the meantime of our recent trip to Oklahoma and a few others. My brother and his family were so thoughtful and welcoming. My niece and nephew are so natural, helpful, and loving to my two girls, and we really enjoyed spending some time with them.

Without conditions. period.

So I skipped a week of writing... good thing there is no actual "deadline". It's been a busy week with my mom, Avery and Kaylee's beloved "Grammy" here to visit and help out. Thank god for my mom. She is my rock, and she is the greatest teacher of all on how to love unconditionally. Who knew how incredibly valuable that lesson would become in my life as it is now. The love we have for our children is like none other. I have written of this before, and truly believe that on many levels our children's souls are somehow connected to our hearts as we walk our journey through life. When they feel pain, we feel pain, and the same is true of their joy and success. But on some level, as children age, it seems like expectations come into play as far as being "proud" of them. I see parents all the time demonstrating this pride, as they talk of their kids accomplishments, their successes, and so on. I am sure that their love is not "conditional," but sometimes one would wonder in hearing them talk. Having always been a little bit selfish and pretty accomplished myself, I totally GET the need for approval and trying to earn love and attention. So in the big picture, Avery is teaching me, and all who know me and her on what it means to really take OUT the conditions. I approve, applaud, adore, and am proud of Avery every single day. Does she give back that love and attention? Sometimes, and in her own special way... and that is enough for me. It has to be, or I would live in a very dark place. I know that she is here for a reason. She is a gift and a blessing just as she is. Does that mean I lose hope in trying to heal her? Of course not... I want Avery to be all she can be, but as I live through this experience, I am trying to be realistic. I have had hope for Avery since the day she was born. One year ago I typed in my iphone all of the words Avery was using. She had lost a few at this point, but she was still able to consistently use about 15 words. She was still able to point and do a few other gestures that she ultimately lost to Autism. I remember being stressed as I wrote the list, but thinking... "things will be different in a year... she will come so far." Boy was I right and wrong. Things sure are different, and though she has made gains in some areas, for the most part she has been in a major state of regression... losing all of her words, becoming a sensory mess etc etc. But I hold on to that hope. As her mother I owe her this much and more. I KNOW that she will likely progress as she gets older, but my love for her is hardly conditional upon that progress. I love her without expectation, without conditions. Period. And so does her dad, and Grandparents by the way. So I am starting to "get" the big picture I think. Maybe for us, Avery is here to teach us all about how to love. Lord knows Grammy already knew this, but for the rest of us caught up in the hustle and bustle of sports, grades, accomplishment and competition, Avery brings us back to what is REALLY important. Just loving her for the sake of love itself. How beautiful and perfect that lesson is.

I miss her.

I have thought of a hundred things to write about this week. But what consumes me the most at this very minute is the longing I have to truly KNOW my little girl. When Avery was a baby, up until she was 14 months old or so, she was full of personality. She still is I suppose, though it is hard to decipher what is "autism" and what is "personality" at this point. She was full of light and wonder, and was so connected and involved with us every minute of her waking life. Over the past year or so, as she has become more and more disconnected, I have wrapped myself up in how to help her... how to treat her... how to bring her back.

Earlier this week a new show premiered called Autism x 6 about a family who have six children, all of whom fall somewhere on the Autism spectrum. If you have a child with Autism... don't watch it. For those of you who want to know more about the disorder, go right ahead. It was pretty devastating to me. To see their 6 year old non verbal daughter, still in diapers, dance around on the kitchen table, seeming completely unaware of her surroundings was more than I can handle right now. I am in the fight of my life, and I don't want the loss to look like that. From what I can tell however, this family knew little of early intervention. I know better than most how crucial early intervention is to the potential living in the hearts of our children. I wasn't born yesterday and I know there is no "cure" for Autism or Mastocytosis for that matter... but it doesn't mean I give up hope. I will keep trying, keep fighting, and keep searching to get my sweet daughter back. I love her to pieces just as she is... but I still miss her. I will miss her everyday, every minute of my life. She brought music to my soul. Though the melody has forever been changed, the song is still present. Still playing. Still growing and changing as time beats on.

A good week.

There is often a rainbow when the sun appears after a great storm. Not always a big, full arc shining colors rainbow, but pleasant to look at nonetheless. Sometimes I am angry at my role in life, other times sad, but always grateful in some way for the incredible lessons I am learning, mostly about how to love.
I was so mad at myself on Wednesday for missing the Oprah show which had Jenny McCarthy on talking about her newest book on being a mother to a child with Autism. I caught the tail end of the show, and heard Jim Carrey (who knew he was such and introspective, deep thinker!) say something I think is great. He was talking about how hard it was at first for him to connect with her son. Here's this guy, who can make ANYONE laugh and react in some way, who said "I could have been on fire in the room and he wouldn't have noticed." Then he said something I am going to hold on to. He was talking about what kids with Autism are here for. He said... "These kids [have] come to show us how to go somewhere deeper as far as loving. They show us that we have to take our expectation out of the equation and just be there because we want to be there for them," he says. "What I learned is to kind of sit back and try to connect. If it doesn't happen, it doesn't happen, but just be there for them."
Isn't that a great attitude to have.
I adore my children. That's what makes this all so hard at times. I want more than anything for them to be healthy and thrive. But I also need to work on ME. As I work tirelessly to find answers, I also need to just sit back and remember to enjoy them. MY attitude is something I DO have control over, so I am going to really make an effort to stay jovial and hopeful. To heal and live fully. To put positive energy out into the universe and sit back and see how it all unfolds. Because we really are blessed.

She Knows Me.

"Avery. Where is your mamma?" "Avery, can you point to your mommy?" "Avery?" "Avery?" Doctor turns to me... "Is she usually this non-responsive?"
"Yes. Especially with new people," I explain. But she knows me.
This child, this baby of mine who is almost 2 and a half, who I nursed for 15 months, who I held and loved with all of my heart and soul from day one, who I shared laughter and peek-a-boo, and silly moments... she knows me. In a room FULL of women, she will smile and approach only me. She will climb in my lap and snuggle. She knows me. As far as we have lost her in this awful disorder... she still knows me.

After our almost unbearable evaluation on Wednesday, Thursday we had our 6 month follow up visit with the developmental pediatrician. No more doubts in her mind this time. Full blown Autism. Little to no progress in 6 months. Wants us to take her in to the geneticist for further testing to see if she has Rett Syndrome. Never did I imagine I would pray that this is "just Autism." But, she knows me.

Friday I was late driving Avery to therapy. I got a speeding ticket and totally lost it. Where is the good luck. So much for my charmed life. Thank god she still knows me.

But things could be worse. They could always be worse. And she knows me.

So today I am a mamma on a mission. I am determined to be the medical advocate for my sweet child that we have yet to discover. No one seems to know anything about Mastocytosis here in Texas. The doctor in Boston who found the link between Masto and Autism has been in touch with us and we are going to participate in his research. But I want more. I have been researching myself and have found that there are some trial studies that suggest that systemic mastocytosis might be helped with a stem cell transplant. Since this is the ROOT of all of Avery's problems... this is the avenue by which I am going to focus my attention. We saved Kaylee's cord blood for a reason... now maybe I can actually use it to help Avery. If I have to send a letter to every stem cell transplant doctor in this state and beyond I am GOING to figure this out for her. She was with us before, and she STILL knows me. She is not gone yet. I am going to hold on to her as tight as I can, and use all the power within me to pull her back.

They Can't ALL be good days.

So, it seemed like we were rolling along pretty steady. Avery was doing okay in therapy and preschool, not much progress, but a little less regression. Kaylee was thriving. Growing like a weed and showing off new skills all the time. We were getting into a routine. I'm back at work one day a week, enjoying the break from my own crisis. Things were just starting to look a little brighter. BAM... assessment time. I hate... no, I despise taking Avery to a new place for a developmental assessment and having to relive the last 15 months of hell. And this time, she was hating it too. When it became clear that she was not going to respond to the evaluator, she was strapped into a wooden chair, favorite toys snatched from her hands and repeatedly asked to perform... which she was in NO mood to do. "Point at the bear's eyes.." over and over and over again... then "put the ball in the box" over and over and over again. The evaluator saying "she hasn't looked at me one time today." No shit lady, you took her toys and stuck her in a wooden trap... I wouldn't look at you either. I can promise you that she looked and ME several times as if to say.."what the hell is happening here mom... get me outta this place!"

And then there was my portion. The "parent report" side since Avery was not going to show off her skills. Can she do this??? "no" How about this??? "no" What about this??? "Well, she used to, but not any more." and so on and so on. So I am ONCE AGAIN reminded of what her deficits are. How she can't do basic things 9 month olds can do. "But she knows her letters!!!" Only for the evaluator to test this and Avery just stared off into the corner... she had checked out of this place!

Ugghhh. I started to check out too, and daydream of having a "normal" therapy free day with my free spirited toddler eating normal food at a park, having fun, swinging and sliding down the slide. I will survive this day, and many more like it that I am sure are in our near and far future. It sucks though. Autism sucks.

Rock Star Avery

Today was Avery's second day of preschool. The first day was good... today was even better. On the first day and at the open house it was clear the teachers were nervous about Avery being their "special needs kiddo." They asked me several questions like "what sets her off" and what kinds of repetitive things she liked to do. As I have mentioned before, Avery is an under-reactive kid on the Autism spectrum. It takes ALOT to even get her attention. When we went for 4th of July fireworks that were literally right above us, she barely noticed the noise. Anyway, most of the kids were crying on the first, and the second day. Apparently, at any given moment, at least 3 of the 9 kids were upset. On the first day Avery struggled a little bit with transitions (moving from outside back in) and with sitting for long periods during circle time. Today, she went through the day like a champ, even saying "hi" and waving to another little girl when her therapist (who is so kindly there to shadow her) showed her how. Phewww. I must say I am extremely relieved. Bryan and I are working so hard to try to figure out how to help Avery, and how to make the right decisions when choosing therapy, schools etc. I am beginning to have hope that at least this decision was a good one.
On another note, in the last week a few other things have come up. I joined an online support group for parents of kids with Mastocytosis. One of the other mom's there mentioned that her son also had both Masto and Autism... then another one. Finally, they referred me to a site where a doctor at Tufts University is seeking funding and data to do more research on the link between Autism and Mastocytosis. Come to find out that kids with Mastocytosis are 7 times more likely to ALSO have Autism. Why you might ask? Well, the theory is that when your body produces way too many mast cells (the cells responsible for hives and healing) the mast cells not only infiltrate the skin, but also other major organs such was the case last January when we found out that Avery has too many mast cells in her bone marrow as well as her skin. Well, these cells can ALSO invade the brain, causing inflammation and releasing a chemical that makes the brain more susceptible to damage from neuro-toxins... such as those in vaccines, viruses etc. So, this explains WHY Avery was FINE, then after several illnesses, vaccines, antibiotics, etc, her brain started to become inflamed... CAUSING or at least looking like Autism. So, FINALLY we have some answers. We have contacted the doctor in Mass. who is looking further into this link, and we may participate in some research studies that could help with future treatments! If you are interested in this, please check out the link at http://www.wickedlocal.com/brookline/archive/x160320501/Brookline-doctor-seeks-autism-breakthrough In the meantime, however, we wait. Patience is NOT a virtue of mine. When I found out I was pregnant, I wanted to know the sex right away, when Avery turned 6 weeks old, I wanted her to sleep through the night the next night (who knew 2 and a half years later she would be up for hours at a time EVERY night), and when I found out Avery had Autism, I wanted answers and help.. yesterday. I am working on it though. Whether I ever wanted to or not! So yet again, another blessing arises from this whole messy experience. It's the littlest things we are learning to appreciate. And we do so with all the hope in the world.

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.

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.

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.