Avery Grace

Avery Grace

Saturday, February 21, 2009

The journey

When you have a newborn baby, you are "broken in" to parenthood pretty quick. Gradually, they are awake more often and their needs become more complicated, but initially, when they first arrive... they are simple, pure, sleepy, hungry and cuddly. It is the beginning of a lifelong journey that twists and turns in ways you never expected, and that brings forth absolute joy, and vulnerability beyond anything ever experienced before. If you thought you knew of unconditional love before, now you are given a whole new definition. If you thought you knew fear, now you comprehend consternation.

I liken my journey into having a child with special needs to that of becoming a new parent without a clue.... though I had a clue, just not a clear and present, in my face kind of realization I have now. It started off easy... so she may just be a late talker. Her dad didn't utter word until he was 2, maybe she's just a bit delayed. After all, she was still social and funny, sweet and endearing. Then we thought maybe she stopped talking and pointing as much because she had been sick, and was mastering walking. That must be it. Then the dwindling eye contact, then the distant staring... and so on. Once we started seeking out answers, even the doctors were conjectural. Her therapists would go back and forth. She was still holding on to some skills she would only later lose. It was all so bewildering.

So after a while, some thought she may be "mildly" on the Autism spectrum. Surely she would make progress and work through these difficulties. Several specialists wouldn't even categorize her at all... until she hit 2. Second and third visits to the same specialists yielded new doubts, and gradually brought us even deeper into the diagnosis. No longer using words like "mild" or "maybe." Now in addition to Apraxia and Mastocytosis... we were hearing Autism.

I have heard some parents compare this type of journey to that of losing a child altogether... and though I wouldn't go that far, I would say it is close. So then came the panic. The utter confusion as of what to do next. Once settled in various therapies and biomedical treatments, the depression sinks in... and you are left to agonize over making the right decisions, fighting the system, warding off stares, and explaining away differences.

After some time, and I imagine that how much time differs from person to person, acceptance and gratitude begin to come into play. Do I still worry about Avery every minute of the day... absolutely. And do I still wonder how she could ever manage without me... every second. But at least now I feel like I can breathe again. Maybe next year I will relearn how to sleep.

But don't get me wrong. I am no expert in this field yet. We are still at the beginning of this journey, and we don't have a clue how the book is going to unfold. But I will tell you this... like any new parent... I am growing accustomed. I am learning how to love my sweet girls just as they are. I am gaining strength with every step, and I am preparing to live out my long life working to better the circumstances for my family and those like us.

A roller coaster can't begin to do justice to describing what the past 2 years have been like for us, but the ride is getting more bearable... and somehow, we are finding joy, abundance, and humility within the experience.

Monday, February 9, 2009

Giving Back

Several people have asked me what it is like to be a mother to a child with Autism. Within that conversation, inevitably, the comment or question always arises, "but it must be so hard because she can't give back." Avery can't yet tell me she loves me. She can't ask for me, or talk to me about what she likes or doesn't like. She can't reassure me that I am making the right choices for her, and she can't call for me in the night when she is feeling sick. Thankfully, however, this hasn't impacted the incredibly strong bond I have with my sweet daughter.

Most of you who know us well, or have read my blogs before, know that for Avery's first 15 months or so of life, she absolutely did not have Autism. We knew about the Mastocytosis, and we knew that her health was threatened, but ignorance was bliss as we did not yet know of the link between autoimmune diseases, specifically the one she has, and autism. So during that time when Avery was our only child, she was the focus of our attention, the light in our lives, the source of our happiness and fun. At that time, she could look at us, say mama and dada, laugh with us and at us, breastfeed for over a year, and share our affection. Only later did she start to drift away. That being said, the bond was already in place... and it was and is as strong as steel.

So, though it may be true that Avery can't "give back" now in the ways most are accustomed, she gives us so much more... maybe even because of her disability.

She gives us simplicity. We don't need words to communicate, she simply takes our hand, smiles, or giggles with delight.

She gives us courage. We never truly understood the power of this word until we have had to confront doctors, insurance companies, therapists and spectators.

She gives us understanding and patience. Never before Avery did we think we could "wait for answers," comprehend that some things may never happen, and be graceful in not knowing what lies ahead.

Avery gives us hope. Hope that all people may learn to love so deep. Hope that modern medicine will bring forth answers to our prayers. Hope that our children will be all that they can be, and hope that we can be the best parents we can to foster their growth and well being.

Avery gives us abundant happiness. Happiness that is not dependent on expectations. Happiness found in a look, a hug, a smile, a laugh. Happiness that is not derived from performance or demands, but that exists intrinsically in our souls and hearts.

And finally, Avery gives us love. She doesn't have to say it, but she IS love. She exudes love. She teaches us how to love.

She gives us all these things and more. How could we possibly ask for more than that.

Thursday, February 5, 2009

Sisters of Special Needs Children

To you, my sisters of Special Needs Children

By Maureen K. Higgins

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores.

I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasound's. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed.
Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, and "the"" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and physiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment
for our children with spinal cord defects. We have sued
municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated insane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "Welcome To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.

We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

Sunday, February 1, 2009

Tough Calls

There is no handbook. There is no "right answer." There is no protocol. As I travel this road with a sick and developmentally disabled child, I realize more and more, that NO ONE knows what to do. February marks a year since we knew that Avery has Autism, and two years that we have known of her autoimmune disease. We are still searching for answers, hoping for miracles, longing for discoveries, and wishing for our sweet daughter to come back.... even if just for moments of each day.

In the last two weeks, we have had to make some tough calls. I have never been one for confrontation. I hate to "rock the boat." But as one friend of mine put it, "you are an autism mama now, so you have to stop being so nice." One of Avery's therapists just wasn't working out. I have known her for years, and feel so bad to have to let her go, but there was no connection to Avery, and what was for a time simply not productive, became counter productive, so I decided to make a change. We have already had a visit with the replacement, and I really feel like I made the right choice.

In addition, I had to let our babysitter who has been with us for almost 2 years go. There were multiple reasons for this one, one of which is that I just don't have enough hours in my week to get Avery all that she needs, work, be a breastfeeding mom to Kaylee, and a decent wife. I cut back my hours significantly at work, and am going to focus more on my girls for a bit. They need me right now... maybe even more than we need the paycheck!

More tough calls.

We are coming up on another milestone. Avery will be three years old on March 28th. Bittersweet. This will mark the end of her early intervention services, and the beginning of school district mania. Although she will be eligible to begin services, (PPCD or Preschool Program for Children with Disabilities) on her 3rd birthday, we will likely postpone her start date to the fall. Her current teachers, and the private therapies that we will continue are fantastic, and I am hesitant to move her mid year. We'll see though. I am scheduled to have several meetings, a tour and a big eval with Frisco School District all in the coming month. Yuk.

As for her Mastocytosis, Avery has started even more medications. She still has several dozen "spots" or mast cell tumors all over her body, and now she is also having flushing episodes several times a day. We are fearful of anaphylaxis, so we always have her EPI pen, and her doctors are at a loss. One actually told me this past week, that Avery is a medical mystery. Great. So now she is on six, yes, six different mast cell stabilizers. Poor thing is walking around like a zombie. In addition to her traditional medications, I have started her on more supplements to help boost her immune system. She is on 12 different supplements.

On a positive note, Avery is giving out hugs, kisses and the occasional "five" this week! She continues to drag us around by the hand as her attempt to communicate, and has been as happy and carefree as ever. Kaylee loves to stand all by herself with no hands! She is waving and starting to clap and point a little bit. I am delighted to see her make typical progress, but after seeing Avery have and lose all of these same skills makes me so nervous. I am trying to just enjoy it, but sometimes it's hard.

All we can hope is that we are informed enough, and that the professionals around us are informed enough to help us make the best decisions for our children. I continue to work tirelessly to be knowledgeable about the various challenges we face, and will keep doing my best to make the right "tough calls."