Wishes

I spend quite a bit of time wishing. Call it hope, call it prayer, call it projecting, call it dreaming... whatever it is, it helps me cope. I can't tell you how many times I shut my eyes a day and make a quick wish. Usually, I am wishing for Avery to make progress, for Kaylin to stay neuro-typical, for Bryan and I to retain the endurance to survive all of this.

Sometimes I even try to visualize what it might be like if and when Avery starts getting better. I try to hear what it will sound like when she calls me mama. It's hard to hear sometimes over Kaylin's voice, but trust me, I'll keep listening.

But the theme remains the same. In this world that has given me grace and perspective, I continue to keep it simple and remind myself of my MANY blessings. Being grateful when your life is going as planned is one thing, but I find it even more necessary now that things are out of control. If I start to get overwhelmed (which I often do) I take a deep breath, make a wish, and remind myself of the silver lining. Of the complete and utter joy I find in the sparkle of Avery's eyes or in the delicious sound of her laughter.

Avery IS getting better in many small and significant ways. She is much more aware of her surroundings. She is walking with us, and reaching out to make sure we hold her hand. She is actually GAZING at us with a smile on her face for longer and longer periods of time. She even pointed at something the other day and imitated some simple play actions again. It's been a long time since we have seen her do that. She seems to have been bored with puzzles lately and her new school hasn't even seen her do one, but at home she got them out again, and did several all on her own. Another thing we thought she had lost. So maybe my wishes are being heard. I have to keep hoping.

Wishes and dreams may be childhood fairy tales, and they certainly don't always come true, but they have a purpose in my life. When my faith is running low, I can escape for just a moment and throw one out there. Heaven knows we all need a little of that childhood innocence to guide us through. So I will keep wishing. Hoping. Praying. And I will also keep relishing in what TODAY brings me. Because when it's all said and done, living in the present is what it's all about. Enjoy your moments. Rejoice in hearing your child's voice. Her laugh. His look. Celebrate what they CAN do, and keep wishing that one day, maybe they can move mountains.

One thing after another

I am not sure I would want to be my friend anymore. Really. I am annoying myself. The constant drama... the quick transitions from one crisis to another... the stagnant state of sorrow mixed with hope, anxiety and a dash of joy... Truly. I think I would have had enough of me already.

Somehow, someway, we find ourselves continuously surrounded by the loving and generous support of our friends and family. God bless them.

When your child has cancer, or another well known devastating disease... people make you dinners, put you on prayer lists, etc etc. When your child has Autism, people generalize, critique, pity, and fear you a bit. They quickly judge you for fearing toxins, the overuse of antibiotics, vaccines, food additives. They see your child in the store and shake their heads.... thinking what little control you have over your "non-compliant" child.

I find myself wearing my "Hope to heal Autism" shirt more and more. It seems to help explain why we have to have highchairs in restaurants for our three year old. Why we can't let go of her hand when walking. Why she walks funny, can't run, stumbles on curbs, can't use a fork/spoon, sometimes drops things including food on the floor, can't look or talk to people, and laughs at ceiling fans.

With the lovely combination of Autism AND Mastocytosis, Avery has now, and will ALWAYS have many battles she is fighting both inside and outside of her body. Some of our most dear talk about "Avery's Army." Trust me, in my house we are at war, and trying to save her is the most complex and tedious thing we have ever encountered.

A few weeks ago we sent out 4 comprehensive tests of Avery's urine, stool, and blood to determine what is going on inside her little body. We have gotten two tests back, which indicate extremely high levels of fungus (yeast) in her GI system. Yuk. So, now she is on anti-fungal medication, several more natural supplements and is experiencing the pains of "yeast die-off." Several other "levels" were off, and we are heading back to the Dr. to determine our next course of action. No fun. Now she has a fever, and I think I may be getting one too. Double no-fun.

Despite all of this, we find our moments of perspective and peace. We remain so grateful for our lives, and that we have our children here with us. Grateful for our loved ones who stick by us day in and day out.... even when we are one big ball of stress/panic/sadness. Grateful for the chance to learn so much from someone so little, so precious, so unknowing. Grateful for the few who do understand how this continues to devastate us, despite time passing. Grateful for each moment, each look, each smile and each laugh.... even if it is at a ceiling fan.

The raw and bitter truth.

I was talking with my very wise Dad the other day who advised me to, every now and then, lay it out there on this blog with the reality of our daily struggle. His point was, (and I think he's right) that it's not always bright and shiny around here, and it's okay to be angry and upset about it. We have bad days.... and days when staying positive and hopeful is really hard. I admit that several days a month I feel like shouting to the heavens... REALLY????!!!! THIS is my life!? How incredibly unfair. NOBODY should have to watch their child suffer like we do. WHY does it have to be this hard to learn such basic, foundations of human functioning. AND.... for example, when sweet Kaylee broke her arm the other day, I feel like screaming... "How much more are we supposed to handle at once!!!"

Patience is NOT one of my strongest assets. Never has been. I, like my precocious one year old, want what I want when I want it. I want Avery to get better. I want her to start making an inkling of notable progress. I want her to say mama, or hi or even to wave at me.... something! But I HAVE to find a silver lining in all of this. I have to believe that for whatever reason, this is the path that I am supposed to travel. This is my purpose.

But when Avery is on her fourth night in a row of sleeplessness, random squealing, laughing and cackling from her bed at 4 am.... I grow a little wary. I look around me and can't believe how much people take for granted with their healthy, happy, NORMAL children. I feel angry. I feel bitter. I feel cheated.

Thank god she is starting to look at me. Just look at me and sometimes really smile at me. That's something, right? I am holding on to whatever I can here. I am desperate for patience. Please give me patience.

I am off to take my anti-depressant. Clearly I need it today.

Oh, What a Joy! Kaylin Joy Beeson turns 1!

This past week we had the pleasure of celebrating Kaylin's first birthday. I spend so much time on this blog writing about our journey with Avery, that I fear my spunky, noisy, fun and feisty second child may not get quite enough documentation!

When we found out we were having a second daughter, Bryan and I both whispered an elated "yessss" in the sonogram room as we watched her bounce around on the screen. We were in the midst of discovering how deeply Avery was impacted by Autism and Mastocytosis... and for whatever reason, learning that we were having another girl led us to breathe a sigh of relief as we were beginning to understand the importance that having a sister could have for Avery. A baby sister... not even here yet, brought hope, joy, inspiration, and fear all wrapped up into my swelling belly.

When Kaylin arrived, her introduction to the world was fast and furious. She immediately was loved beyond measure, and quickly became the flexible "baby on the go" as we shuffled Avery from appointment to appointment. Thank God for breastfeeding because I was doing good to pack a diaper less well worry about cleaning bottles on the run or mixing formula.
For her first nine months of life, we threw the "rules" out the window and let her sleep with us. I think it was our way of bonding with her since our days were consumed with Avery's therapy and appointments. She did everything pretty much on time... smiled, laughed, cooed, rolled over, played social games, sat up, crawled, and by her one year mark, was walking all over the house bringing us toys, talking, and imitating up a storm. She has several "baby signs" and she lives for attention.

When I try to describe the love I have for my daughters, I know I fall short on relaying just how much and how deeply I cherish them. I am sure you mothers out there can relate, but I must say that though I always knew I would love my children, I never knew how deeply rooted that feeling would live in my soul.... in my heart... and in my total existence.

I am eternally grateful that Kaylin graced our lives when she did. I think I needed her to ground me as much as she needed me in those first few months to survive. She saved me in more ways than I can count, and I hope that I will always celebrate her for the unique and wonderful individual she is becoming. Avery has taught me how to live, how to love and how to see better.... and Kaylin brings her own set of life lessons that I know I will benefit from for the rest of my life. So happy first birthday baby girl. I am so proud of you. Love you to the moon and back again.

Hardest Part

What's the hardest part about having a child with Autism?

Depending on which parent you pose this question too, your results would be as varied as our children themselves. For some, it's the inflexibility... the difficultly some children on the Spectrum have with changes in routine, trips out of the home, new environments etc. For others, it might be the challenges some children have with receptive or expressive language, or both. Or that your child doesn't smile at you very much, or laugh with you, or even look at you.

While there are "core deficits" that all or most children on the autism spectrum have, for the most part, they are as different as any two neuro-typical children would be. They are individuals with various strengths and weaknesses. My child, like yours or any other, is special and unique, quirky and fun. But she is also disordered and sick... but we choose to define her as angelic and amazing.

The hardest part for me is the unpredictability of it all, and the absolute unknown about both what caused her to regress into this condition, and what is yet to come for her development, health and overall capabilities. I hold a tremendous amount of hope for her, and am perhaps her biggest fan, but really, I have NO IDEA what lies ahead. It is something I have really had to learn to deal with, and even more, to be at peace with. For me, this has been the biggest challenge.

I can handle the stares. The dirty looks. The pity. The financial strain. The lack of language. The indifference. The meltdowns. The sadness.

and I am learning to handle the unknown. The unfairness of it all, and the resentment.

It's not that I am resigned. I am FULL of hope. But I am also learning to be okay with the "what if's." What if she can never talk? What if she can never live on her own? What if she stays locked inside herself? NONE of these things do I want for her... but I also want to move on. To be okay with who she is, and not spend her life wishing she was more. She IS so much more. She is my heart, and extension of my soul, and my every wish, hope and joy all wrapped up into a little, silly, happy, non-verbal 3 year old.

Will I spend our every last dollar ensuring we get her the best medical, therapeutic, and natural intervention available. You betcha.

Will I always wonder if I had made different choices would things be different. A little bit.

Will I worry about my needing to live forever to care for her. Every moment.

But more than all of this... Will I enjoy her for WHO she is, for what she CAN do, and for the grace, love, inspiration and hope she brings to my life every minute of everyday. Absolutely.

April is Autism Awareness Month. Be aware.

Please check out the team Avery's Aunt and Uncle created to raise money for Autism.

https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=288446&lis=1&kntae288446=13AA9C773F7748789A1E5F82B99F6963&supId=252336933

Tonsillectomy Drama!

My apologies for the length of time that has passed since our last update. My role as mom is now blended with "nurse" as I have been helping Avery around the clock as she recovers from the removal of her tonsils, adenoids and the placement of her ear tubes. I thought this would be "no big deal" and BOY was I wrong!!! We are on day 12, and she has YET to take a drink of anything on her own, and is only just now starting to willingly eat a few things. She has been on the verge of dehydration since the surgery, and I spend much of my time drawing up fluid into a syringe and shooting it into her crying mouth so she will swallow. Good times.

The nights are the worst part. I guess her throat dries up and the pain is unbearable so she wakes up screaming. Last night was only one time, but before that we are talking about every hour to hour and a half of painful whimpering or full blown hysterical crying. I also think the narcotics were starting to make her crazy. As if we don't have enough issues... now I have a drugged out 3 year old with Autism who is starving and dehydrated. Let me assure you that if I knew it was going to be this hard... we would have waited a few years until bribery or reasoning was more effective with her. Lesson learned.

But, what doesn't kill us makes us stronger, right? Let's hope so, because at the moment I feel pretty worn down.

Opinions

From the moment your child is conceived and onward, the choices we make as parents become subject to all kinds of judgment. Sometimes critical and harsh, other times well meaning and heartfelt, but judgment nonetheless. Timing of pregnancy, whether to find out the sex, how to take care of ourselves during pregnancy, whether to consider a c-section or induction, to breast or bottle feed, to vaccinate on schedule, alter it a bit, or skip it all together, to let kids cry it out or not, to co sleep, or start them out in a crib... and so on and so on. It is endless. Everybody seems to have advice to give, and opinions to share, when really, we are all doing the best that we can.

This world of critique also exists, and can even be far more intense, in the community of special needs parents. I am on several online support groups, and the because the treatment options for a child with Autism are so vast, the outlooks on how to move forward can and do vary drastically depending on who you ask. As if we aren't under enough stress, anxiety and despair with our child's diagnosis, now we are being judged by therapists, doctors, other parents, friends, online acquaintances, and family as well.
It astounds me.

This is why I have purposefully left out some of the more controversial topics related to Autism diagnosis, treatment, and even prevention on this blog. I don't need the backlash. But really, shouldn't we all give our selves a collective "break" and admit that sometimes we make mistakes, but in the big picture, we are all just trying to make the choices that work for us and our families.

I don't want to be afraid to admit that Kaylin has yet to have had the first vaccine because I truly believe they haven't been tested enough on children with autoimmune issues, and can't even fathom why they haven't done a simple comparison on vaccinated verses un-vaccinated children and the rates of Autism in those two groups. I don't want to worry what people will think of me when I tell them my daughter is NOT on any of the special Autism diets because I don't want to take away one more thing she likes and enjoys in her life that is hard enough. I don't need to be concerned when others snicker when they hear about some of the more alternative approaches we attempt... until they have walked in my shoes, they know nothing of desperation and longing to reach your child again.

With a heavy heart this week I watched as "experts" in medicine argued theories on causal factors and Autism, and felt the stab in my heart as one even stated that "regressive autism" doesn't likely exist as it is most likely related to parents "missing" early signs. SCREW YOU Dr. Expert!!! I have VIDEO to prove my daughter HAD and lost skills.... she is the definition of regressive Autism. I have a masters degree in child development and not to mention over 8 years experience working with kids who have Autism. I am not an idiot. But thanks for nothing.

I am tired of not knowing answers. I am sick of walking on eggshells. SOMETHING is making Autism an epidemic of gigantic proportions! A new study in the UK discovered that 1 in 60 kids has Autism. When is enough enough? When are people going to stop judging, and come together to figure out why? It's the WHY that haunts me and keeps me up at night. It's the WHY that makes me want to come unglued.

I am OVER being critical of how someone parents. Unless a child is being neglected and/or abused, how they choose to feed, put to sleep, medicate, and treat their child is none of my concern. I welcome useful ideas, but what we need is SUPPORT, not anguish. My 3 year old can't sleep at night, and sometimes we rock her. My almost one year old slept in the bed with us until she was 9 months old. I choose to breastfeed, but I do it because it helps me bond, and I don't have to clean bottles. Avery was on a bottle after the breast until she was well over 2. She also still eats baby food from time to time because it's the only way I can get her to eat some veggies. We do ALOT of things "wrong," but we are getting by. We all have to do it our way, and just because my way is different, doesn't make it detrimental.

I think we all feel somewhat insecure about the choices we make, which makes the differing opinions of others fuel our already abundant guilt. Let's try, all of us, to let it go.

It is worth repeating: What we need, what I need, is SUPPORT.

Avery is having her surgery on Thursday. Part of me is a nervous wreck, and I feel a tremendous amount of guilt and anxiety about subjecting my sweet and unknowing daughter to pain, fear, and more pain. Please keep us in your thoughts and prayers, and remember that April is Autism Awareness month. Remember that we are all giving this our best. Remember that it is not our place to judge, but to love and build relationships based on truth, equality, respect, and adoration.

New School

We've had some big changes around here! Avery turned three last weekend and though it was too cold to go to the zoo as we had planned, we quickly adjusted and had a fun day anyway. Avery also started her new school. She is in a PPCD-TLC class which stands for: Preschool Program for Children with Disabilities- Total Language Class. It is at a nearby elementary school, and so far she seems to be adjusting well! She is the only girl in her class of five kids with 3 teachers, and all of the kids have moderate to severe Autism. She will get Speech therapy, Occupational Therapy, and Physical Therapy as part of her school day, as well as all the additional therapy we supplement privately (including more Speech, PT, neurofeedback therapy, ABA and RDI). The most difficult part of the whole week is getting everyone ready, fed and out the door by 7:25 am, so she can be there around 7:30am. Since neither of my kids are good sleepers, especially Avery, this will certainly take some getting used too.

Though I choose to celebrate every laugh, every look, and every interaction with Avery, I must admit that her turning 3 was a little bittersweet. As she gets older, the differences between her and her same aged peers are greater and greater, and our every moment of every day can seem to revolve around her disability. Taking my "just turned 3" year old to a public school is also mind boggling. She has experienced the joys of preschool where her teachers love and adore her... but somehow this is a bit different. A bit more institutional. But I have every hope that it is the right place for her to be. I have every hope that she will thrive.

Kaylin is now eleven months old, and not to sound too much like a cliche...but I really don't know where the time has gone. With your first child that first year seems to drag on and on... but with the second, it has flown by. Kaylee (as we call her) brings lots of noise and fun to our family. She is sure to be heard, and is a spitfire in every way. So far her development seems on track, and since she doesn't have Mastocytosis, we have every reason to believe it will stay that way. Avery having given us the beautiful gift of perspective, we have learned not to compare, not to borrow trouble, but to just enjoy Kaylee for the neat and spectacular little person she is becoming. I am beyond grateful that she is part of our family, as she adds so much character, spunk and JOY to everyday.

We don't worry about the small stuff. We don't agonize over the economy, or performance, or what might be. We have endured what we once thought of as inconceivable, and have stared fear in the face and come through stronger than we ever imagined possible. How lucky for us that we got to learn these lessons through the eyes of our beautiful child, and that BECAUSE of her, we will live our lives more fully, and with a perspective that allows us to experience complete joy and acceptance of our children no matter what.

A tribute for Autism Awareness Day

Happy Birthday

Three years ago today, I was anxiously awaiting the arrival of my first born daughter. The room was set, clothes washed, toys and books waiting on shelves, and I could hardly wait to meet her. To see, hear, smell and feel her. In some ways it feels like forever ago. Life is different enough before kids, but before kids with special needs and potentially life threatening illnesses, your life before seems like you were living on another planet.

Tomorrow, our sweet and amazing girl will be three years old. I want to take this time out to celebrate her, for all that she is, and for the absolute and infinite love and joy she brings to our hearts.

Avery loves to hold hands. Several dozen times a day, she grabs our hand to take us to what she wants, or to take us to her toys to play. She also loves to snuggle... sometimes not at our favorite times (mid-night) but when you hold and rock her, she inches in close, smile on her face, hand in hand as we glide her gently off to rest. She LOVES birds. When she sees one, she lights up, and now the only stickers she likes are those with a bird or favorite TV character on them. Funny since she shows excitement by smiling and flapping. Maybe in her own way she can relate. Avery loves when Daddy gets home. When I tell her he is here, she moves as fast as she can to greet him, and grins ear to ear as he picks her up for a big squeeze. Avery also loves the carousel, the park, slides of any kind, swinging high, and climbing. She doesn't make a lot of noise, but she laughs every day... and the sound is like music to our souls. Even without words, she is easy to read, and communicates in her own way. In every way, she is special and worthy.

Life before Avery was so easy. Our worries were so superficial, our heartaches so mild... but our joys were not near as meaningful, and our celebrations nowhere near as graciously met. With every moment, she shows us how to love. How to be better... how to look past disability, and how to see perfection in imperfection, how to greet life with a new attitude, and how to throw judgement and expectation out the window. I gave my parents a frame last Christmas with a quote on it that stated " Though we teach our children all about life, our children teach us what life is all about." How true that is. She redefines my vision of a perfect family, because though our family is far from perfect, I wouldn't trade my life with anyones. So happy birthday, my precious daughter. I love you to pieces, and to the moon and back again.

Out of the Box

I am not sure I ever imagined I would have a child who couldn't talk to me. Not that she will always be non-verbal, but for now as we are a little over a week away from her third birthday, Avery has yet to develop verbal language. So much of how we connect to others is wrapped up in words. Being able to talk, is something everyone seems to be able to do, right? Wrong. I don't want to keep repeating myself here, or repackage the same message again and again, but when it comes down to it, this is how I find myself coping. How I manage to convince myself that in the big picture, my life is pretty grand.

Think about it this way. Sometimes our memories, such as those of a beloved grandmother who passed or an old friend we can't find.... are actually not "verbal" memories at all. They are images, feelings, senses etc. With Avery, since we can't connect through language, we have to dig deeper. Find a connection through a song, a touch, a picture, or an experience. I feel extraordinarily lucky that she has enabled me to look beyond words, and find meaning in the moments.

In each "evaluation" or "assessment" of how Avery functions, we hear alot about what she needs to learn. What about what WE need to learn? She is an amazing teacher, if you just look beyond what is "standard" or "normal." I know that as her mother it is my job to guide her, to show her the world and teach her how to live in it, but how amazing for me that I get just as much knowledge from her. She is here for a purpose. For those who know and love her, she is showing us how to think out of the box. To sit and be quiet as we watch her light up to one of her favorite songs, to walk side by side with her and experience her joy as she sees a bird fly by, or to realize how a simple hug can merge two souls together... even when there are NO words.

Hope

It is Sunday... arguably, my favorite day of the week as the pile of chores has been mostly attended to, and there are typically no firm commitments or appointments. Though, there are always exceptions. Coming off our week, I am even more grateful for the peace. Tomorrow we will resume therapy, blood work, collecting urine and feces for tests, but today, we can just be a family. I love it.

Both of my girls are taking naps for the moment, and I can actually try to catch up on emails, phone calls, etc. I just spent a fabulous hour doing homework on some of Avery's new medicines and treatment protocols, and feel inspired. I always feel a bit euphoric when we have a new idea of how to help her, and today is no different. I also spent some of this time on a fantastic website that documents testimonials of parents who have helped heal their children. Not all of them to the point of recovery, but healed their bodies nonetheless, and helped ease the Autism symptoms. The site is www.generationrescue.org . Again, I feel inspired.

I was speaking to a friend of mine earlier in the week who also happens to be a family counselor. She was impressed at how my outlook, mood, and overall demeanor has brightened. I was thinking about this today and why this might be. Then as I put Avery down for her nap, and blew her 4 kisses on my way out of her room, she giggled in a delighted manner, and I remembered. It's because I have decided to follow her lead, and love her absolutely unconditionally. We often throw that word around without really understanding it's depth. When I say without conditions... I really mean it. Without expectations, period.

So while it can be exhausting trying to figure out how to help her, and I will continue to fight tirelessly to her benefit, it doesn't mean I can't sit back on a lazy Sunday and simply relish in the joy she and Kaylin bring to my soul. None of us really know what lies ahead, and I am working really hard to stop projecting and start living more in the present. Knowing that it's the little things, like laughter from a few blown kisses, that make life worthwhile.