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.

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.

Fate?

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.

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!

Easy Silence: EEG

There is a huge misconception that all children with Autism behave in certain ways. Autism itself is not a disorder defined by behaviors, but by real neurological deficits. Sure, several kids spin in circles, some may line things up, others may or may not have good eye contact, some may scream or some may bang their heads, some may talk your ears off, others not a word.... etc, etc. However, none of these things exist across the board. Just like their typical peers, no two kids with Autism are exactly the same.
When we arrived at the sleep institute this morning for Avery's EEG appointment, the tech heard the words "autism" and quickly moved us from our initial room at the front, to a room at the end of the hall, assuming Avery would pitch a fit at the 26 electrodes being stuck to her head, or at having to sit still or whatever. He couldn't have been more wrong. Avery is not the "over-reactive" type, rather, she is hardly ever phased by much of anything. Believe me, I have tried. I could scream at the top of my lungs, and she may or may not glance at me to see what the heck is wrong. In fact, when her favorite shows are on TV, I am pretty sure the house could burn down and she may not notice. But enough about that! So, back to the EEG... our little trooper did GREAT!!!! She was still on the bed the whole time he worked on her head, and when it was time to go to sleep... (though it took me forever) she didn't make a peep. She was her awesome, happy, loving self. I am pretty sure she did better than most any typical kid would. Can't say that often... so I must say we were/are incredibly proud of her. I have attached some pictures so you can see for yourselves!
There is a song by the Dixie Chicks called "Easy Silence." I heard it the other day and couldn't help but think of our quiet little bug.

"When the calls and conversations
Accidents and accusations
Messages and mis-perceptions
Paralyze my mind

And I come to find a refuge
In the easy silence that you make for me
It's okay when there's nothing more to say to me
And the peaceful quiet you create for me
And the way you keep the world at bay for me
The way you keep the world at bay for me."

Avery may be quiet and hard to reach... but her demeanor is so peaceful, so happy, so content. We have moments where I really feel like we connect... though they are few and far between. So, she provides me/us with an "Easy Silence." I am pretty sure that when she is ready, and when we feel like we just can't wait any longer, her silence will break, and I can't wait to hear what she has to say.

Thoughts of Today.

How do you separate your child's successes and failures from your own? Our children become so much a part of us, it is like your heart is beating in their little bodies. Is this codependency? I guess so. But as a parent, I don't know how to do it any other way. The love and passion is so strong, so constant, so all consuming. But it is crucial that I learn how to have a good day, even if my daughter has a bad day. It is important that I learn how NOT to depend on her success for my own personal fulfillment. If I don't figure this out soon... my spiraling depression could get out of control. Avery is in what I guess is her second regression. When the neurologist first examined her a few months ago, he said "Well I would say Autism, but she doesn't have the sensory deficits, so I guess PDD-NOS" (a less severe Autism Spectrum Disorder.) But now, a few months later, she is TOTALLY having sensory issues. She needs tactile input ALL THE TIME on her feet and hands, is squealing and walking around in circles more often. So the hits just keep on coming. I try and try not to focus on "what the hell happened," because I really don't know if we will ever know. Was it the 16 rounds of antibiotics in 10 months? Was it the vaccination overload on an already weakened immune system? Was it something she started eating? It was CERTAINLY something. One year ago this week her Early Childhood Intervention team first evaluated her for what was then considered a very mild language delay. She only had about 10-15 words, and was using gestures and signs to communicate. Now, she has virtually no words, and also stopped using signs and gestures. Occasionally she points at something when prompted, but otherwise would go hungry, thirsty, and unchanged if we weren't on top of her needs. It's enough to drive a mother half crazy. Especially when I am the one staying home, scheduling countless therapies, and watching her child struggle to learn the most basic of human functions/relations. But on the flip side, I can't imagine if I couldn't be here to participate in her remediation. I am way too controlling to let someone else be responsible for helping my daughter get better. :) What I need and want to do is be grateful, instead of being so sad all the time. After all, Avery is VERY happy, loving to me and Bryan, and easy to be around. I want to enjoy my precious and beautiful daughters, and work towards some sort of acceptance for that which I cannot control. My friend and parents suggested the serenity prayer. It's a good idea. So with that, some personal counseling, this outlet to journal, and maybe some medication :), surly my outlook WILL get better. For now though, I guess I still need to grieve. In many ways I have lost the daughter I once had, and I have to let her go. I need to find ways to connect with who she is now, and continue to help her learn how to connect with me. I need to really let myself bond with both of my daughters, and stop letting my fear of losing them inhibit the utter joy I know that they bring to my life. All we ever want is the best for our families. This is the hand I was dealt, and I intend on playing it as smart as I can. I can't promise there won't be sweat, tears, anger, resentment and fear, but I can try to overcome those demons to embrace the light in my life... which is absolutely my phenomenal family. Perfect in many ways, just as they are.