Anna's ABM Journey

One of the most difficult parts of being a special needs mom, especially a CP mom, is making decisions on services. Although I count my family extremely fortunate to have choices, there are so many types of therapy that it can be overwhelming. All I want is for Anna to have the best and most effective therapy - the therapy that will help her grow and develop to her maximum potential. Ultimately, no one knows what that is as every child and every brain is different.

Anna has received physical therapy since she was in the NICU. Once we came home, we acted immediately to continue therapy with Early Childhood Intervention Services. We had consultations with physical, occupational, and speech therapists but ultimately decided Anna only needed physical therapy (PT) and occupational therapy (OT). We had in-home PT three times per month and in-home OT twice per month. Anna enjoyed "playing" with her therapists and we were happy with the services we were receiving. However, as parents (and grandparents) will do, we continued researching to see if anything else might be helpful for Anna.

Anna doing tummy time in her NICU crib

When Anna was 9 months old, we discovered the Anat Baniel Method. My mom came across Anat's book, Kid's Beyond Limits and had everyone in the family read it. As alternative therapies go, this one offers a great deal of hope. It is based in the science of neuroplasticity and the idea that the brain can change and heal itself. The book contains stories of incredible results and of course we wanted to believe Anna could be among these! Soon after we read the book, we learned that Anat would be giving a seminar a few hours drive from us so we loaded up Anna and took her on her first mini-road trip. During the seminar, Anat actually did a demonstration on Anna and showed how disorganized her brain's connection to her back was. According to Anat, Anna hadn't mapped the left side of her body in her brain after those areas were damaged by her brain bleeds.

Anat Baniel demonstrating a movement lesson with Anna

When we returned from our trip, we began seeing a local ABM practitioner, Tracy Roybal, who is about an hour's drive from our house. With the help of my parents, we began taking her to see Tracy 3 days a week every 3rd or 4th week. While we didn't see any immediate changes, we did notice that Anna seemed to initiate more movement than she did during her traditional PT and OT sessions.

Fast forward a few months - we added aquatic therapy to the mix and some additional  PT and OT so Anna was receiving 5-9 therapy sessions a week!! We had a packed schedule, but a major change was on the horizon for us. After another consult with Anat, we have made the difficult decision to discontinue traditional PT and OT and focus on ABM for the time being (though we will continue aquatic therapy). We have made this decision based on our faith in Anna and her practitioners and our belief that this will help Anna reach her maximum potential. As ABM is expensive and not covered by insurance, we have created a website for anyone who might like to support Anna on her journey: www.youcaring.com/standupforanna.

Grown Up Feelings

It wasn't until I became a mother that I experienced the phenomenon of truly dichotomous feelings. When I was young, I either liked something or I didn't. Someone either made me feel happy or sad. Life was easier then.

It began with Patricia. Having her in my life, carrying her for seven months and feeling her wiggle and dance inside me, experiencing the joy of impending parenthood with my husband. These things brought me more joy than I could ever imagine. When she died, my world collapsed and a gaping hole was left in my heart. Now, when I think of my sweet Patricia, I feel both incredible joy and intense pain simultaneously. With great love comes great grief.

I feel similarly with Anna. She is absolutely the light of my life and her smile makes the whole world better! It is true also that some of the events in her life have caused me great heartache, and my fear for her future is ever-pressing as each month goes by and she falls further behind. So much of this is normal parenting and I am aware of that. What parent doesn't fear for their child's future? And what parent doesn't want to snuggle all day with their infant one minute and be as far away as possible the next? (Thanks a lot, teeth!) However, I do equate special needs parenting to parenting on steroids. Every feeling is intensified, and only other special needs parents can truly understand.

I am trying to embrace all of these feelings and accept that adults live their lives not in black and white but in shades of grey. Some days, I am successful and can end the day on a positive note, feeling grateful for my family. Other days, I can't handle the conflicting feelings and the sadness and frustration wins. I spend the hours wallowing in pity, wondering why I have had to endure such tragedy and heartache and wishing things could just be better. I can't find the words to wrap this post up in a bow. Can you guess which type of day today is?

Seeking Sleep

Where does the time go? I haven't written in a while. Like anything, my inspiration comes in stages. The October Capture Your Grief event gave me reason to write so much about our Patricia, and I really enjoyed spending time with her. Meanwhile, our lives with Anna push forward.

On November 8th, Anna turned 10 months old. On the 13th, she was 7 months adjusted for prematurity. Like any typical parents, our lives revolve around her schedule. No doubt about it, Anna is spoiled. She has been through so much that we usually give her whatever she wants, whenever she wants it. That worked for a while. Unfortunately, A few weeks ago, we came to the realization we had a sleep monster! Anna would only fall asleep when she was nursing or taking a bottle, and if she woke up without a nipple in her mouth, she screamed bloody murder! We had become so used to her eating and sleeping whenever she needed to that we failed to consider this might not last forever and that eventually mommy might need more than 4-5 hours of sleep a night. When she started waking up every hour and refusing to go back down, we knew we had to make a change.

Thus began the Googling. Sleep training this, gentle parenting that; I am practically a professional Googler. Like any parent, I wanted a quick fix and for Anna to all of a sudden start sleeping 12 hours with 1-2 wake ups to eat after which she would settle right back down to sleep. But which way is best? It is hard enough to see her cry during the medical procedures and shots she has to endure and articles like this piled on the guilt when we considered traditional "sleep training." I became increasingly frustrated. What is this magical thing where babies are put down awake and just fall asleep?

While things like sleep training and ultimately balancing our needs with Anna's make me feel like a "normal" parent, I can't help but feel our history makes it harder. How can we think about letting Anna cry when I would give anything to be able to cuddle and comfort Patricia? Not to mention the preemie mommy guilt that creeps in from the early days in Anna's life in the NICU when all we wanted to do was pick her up and comfort her but we could not. Hasn't she been through enough? I find myself wishing for and thinking we deserve, an easier baby. I love her, sometimes I resent her, and even though I know it's no one's fault because hey, she's a baby and we're doing the best we can, the guilt can be crushing. I feel guilt when I wonder if there was something we could have done differently to make this all easier. If I let Anna cry even a few minutes while I wallow and struggle to get up for the umpteenth time, I am ashamed to face her and I dread the morning when I wonder if she will resent me for letting her cry.

I admit a large part of my problem was/is impatience. Every day at work I would read about a new step we should implement, and every night when it didn't work I wanted to abandon it and start over. It seemed like all the books and blogs gave great advice on how to get baby to sleep, but no advice for what to do if baby refuses and starts screaming her little head off! Ultimately, we did implement some of the strategies I read about but like all else with parenting, we just had to make a solution that worked for us and we'll do it until it doesn't work any more.

Some nights are good. She goes right down, wakes up twice to eat and goes back down easily in her Rock n Play next to our bed. Some nights, like last night, are bad. She wakes up multiple times screaming and refuses to be anywhere other than our arms or on the boob. (I blame gas and/or teething). The key is to stay the course and support each other as parents. No blame or judgement on middle of the night decisions, but don't be afraid to offer a different solution if you feel strongly enough about it.

This is the goal, and oh what a beautiful sight it is!