Hand to Hold's Official Blog: Written by Parents for Parents

Coping with Developmental Assessments

Katrina and BryceMost parents rarely have the need to have their child assessed, but for the special needs mom assessments become a regular part of the rotating specialist/doctor regimen.  We endure assessments in therapy (often times over and over for each of the different kinds of therapy), at the pediatrician’s office and usually with a follow-up clinic or developmental pediatrician, as well.  In my son Bryce’s case, that can easily amount to a dozen assessments per year.

There was a time this past fall that we hit an unlucky scheduling patch and had three assessments in a single week.  Sometimes they aren’t bad, especially if it’s being conducted by a therapist or other regular care giver who you’ve been working with for awhile.  But, more times than not they seem to be awful, grueling appointments that we have to talk ourselves into not canceling, drag our already knowing selves to and then endure so that we can be given a grim medical report that confirms our worst fears.

As if that weren’t all bad enough, we then have to gather up our precious little one, with a forced smile on our face while inside we’re falling apart, so we can go home and cope with the emotional turmoil this all creates.  Of course, like anything, some days it’s easier and some moms are better at this.  In my case, though, I always feel like I want them to give it to me straight; I want to be as knowledgeable and realistic about Bryce’s progress and development as possible so that I can prepare for the battle of trying to help him catch up.

So I end up going home with one or more medical determinations that in reality have very little to do with who my son is or who he will someday be.  Emotionally, it feels like I’m losing.  Like despite all of the therapy, the research, the worrying and the hard work that goes into raising a special needs child – I’m failing him.

You see, my son Bryce was born at 24 weeks gestation in our home.  My husband and I gave him CPR until EMS arrived and took over but we will never know how long his brain went without proper oxygen.  And a lack of oxygen to the brain kills those cells forever.  Bryce later developed grade III and IV brain bleeds, struggled with proper oxygenation for weeks – even while on a ventilator – and endured multiple, rigorous rounds of steroids, known to cause long term developmental delays, in order to survive.

Today Bryce is almost three-years-old and testing on most levels between that of a 12 and 18 month child.  He doesn’t talk and has only recently begun walking some with the use of a pediatric posterior walker.  I wouldn’t change any of the life-saving decisions we made, nor would I trade him for anything in the world.  That doesn’t mean that I don’t still want the best and most for him.  No matter what the prognosis or how dire the circumstances, at the end of the day all parents simply want the best for their children.

We want them to be able to enjoy life, to love and be loved and sometimes we even let ourselves dream of them growing out of the worst of their impairments to one day live independent, fulfilling lives.  So, how do we balance our desires with the reality of disappointing assessments?

I don’t have the answers but I know that I’ve found, for me, I have to allow myself to grieve.  Some days I struggle to deal with wanting my son to say he loves me or to walk independently, but other days his sweet smile seems enough to fulfill me forever.  I’ve learned that it’s impossible to be okay every day, but if I allow myself my pits and valleys then my peaks are so much higher.  Sometimes just being honest with myself, letting myself be frustrated or disappointed allows me to accept it for what it is and move on.  Ultimately, this special needs mom journey is a long, long, long one – so for me, just figuring out a way to get from one day to the next can seem like a God-send.

Katrina Moline About Katrina Moline

Katrina A. Moline (TX) is a special needs mom to her micropreemie, Bryce. He was born at 24 weeks at home, where she and her husband gave him CPR until medical responders arrived. He spent 150 days in the NICU at Dell Children's in Austin, TX. Bryce has hydrocephalus with a VP shunt, is legally blind with glasses, has mild cerebral palsy and severe, global developmental delays. In July of 2012 she gave birth to her second child only one day shy of 37 weeks and with no complications. She posts regularly on her personal blog about life with a micropreemie, her struggles, accomplishments and family.

Comments

  1. We were there last week. I forget just how hard on your heart those visits can be. I’m trying to remind myself the doctors are there to point out your child’s deficiencies. As the mom, my job is to figure out which ones are worth worrying about. Bryce is an amazing kid, only because he has amazing parents. Keep fighting the good fight, Katrina.

  2. Melissa D says:

    Beautifully written, Katrina!

    Our 26 weeker has graduated from therapy & assessments, but I remember just how awful those appointments were. Our peanut struggled to gain weight from the get-go and we’d have to endure long conversations about increasing her calories, blah-blah. She eats a ton and doesn’t gain weight–lucky girl!

  3. This hit so close to home.

  4. Carissa says:

    You’re a wonderful strong mom, and I hope your journey will continue to enlighten others.

  5. Jo Ann Collier says:

    Trina I know nothing about micropreemies except what I’ve learned from you and your Dad, but I think your article was very informative about what micropreemie Moms (and Dads) have to go through over and over again throughout the year.

    I think you and other Moms and Dads in the same situation are so brave and strong! God be with you; you and your babies are in my prayers. Jo Ann

  6. Katrina,

    You are an amazing mom, strong woman and beautiful writer. Thank you for sharing your journey with other moms through your beautiful post. Thank you for being honest about how hard this journey can be. Together we can help each other when those valleys seem so low. Thank you also for sharing Bryce with me. Every time I hold him in my arms I am empowered to do more. He is such a blessing to me — and so are you!
    Kelli

  7. Laura RomeroLaura Romero says:

    Katrina,

    I can assure you that you are definitely not failing that sweet little boy. In fact I believe that your honesty is setting such an important example for Bryce that no matter what obstacles we face in life we can always find a way to pick ourselves up, find the good and continue to push forward. Six years into our journey and we handle each assessment as it comes, and although difficult I continue to remind myself that pen and paper only say so much and will never define who Brooklyn is or who I am as her mom. We get so many conflicting opinions regarding everything under the sun (between all of her private and school therapists, doctors and specialists) that we sometimes have to fight hard to keep ourselves from staying in those valleys, but at the end of the day I just have to take one sweet look at my daughter, see one smile and hear one sound from her sweet little voice and I know that regardless of what comes our way, she will be ok. You are doing an amazing job!

  8. This hits home for me. Katrina, you’re way of handling it is right on!

    I got some advice when my daughter was first diagnosed with hydrocephalus from another hydro mom. She said, “Take assessments with a grain of salt.” It wasn’t until recently that I truly understood her remark.

    Assessments are a necessity. They keep you on track and remind you to keep working hard with your child in order to give them the best outcome.

    However, assessments have been one of the most depressing things I’ve ever had to endure. I actually know women who have stopped going because they just don’t want to hear how behind their child is anymore. For one, I honestly don’t think they can give an accurate assessment within 1-2 hours of testing your child out of every six months. Two, most moms are already doing all they can (therapies) to keep their child from falling any further behind. Because of all the regular therapies, we already know how behind they are, where they’re behind, and what we can do (or not do) to help them. Do we really need another assessment telling us what we already know? Three, I just don’t know how much I trust these tests. What if your child is uninterested, too distracted, or simply not in the mood the day of testing? And four, I’d rather not pay someone to make me depressed for a week. I worry enough as it is. Too many tears have already been shed.

    Maybe I’m in denial about my daughter’s latest assessment, but after talking with her regular therapists about it, I’m positive she’s not near as behind as I was told. Yes, I’ll be going back in 6 months. It’s in my nature to do so. Let’s hope this time I’m armed with my salt.

Trackbacks

  1. […] mentality should carry over after the NICU as well as we venture into the world of Early Intervention and multiple specialist appointments.  There is so much in the lives of parents of preemies that […]

Speak Your Mind

*