Sunday, January 18, 2015

Shoes: A look at Special Needs Parenting

By Joel Brens

Have you heard the phrase "You don't know a man's journey till you walk a mile in his shoes?" It's a tired, somewhat overused way of expressing that we really don't understand the struggle of others. That being said, in so many cases, it rings so very true. I spent the better part of two years blogging about the ups and downs of parenting a preemie baby in and after the NICU. As much of our journey in the NICU has changed me, our journey beyond it has also been a vast growing and learning experience.

While a majority of us share similar circumstances, specifically a stint in the NICU, the dynamics and circumstances can be vast in comparison. My son's life never hung in the balance, he wasn't diagnosed with ROP or CP, or a great deal of other conditions that can provide steep challenges and adversity for parents. That being said, my son is a special needs child, and the day to day struggle is real.

There are days when I don't give our obstacles a second thought, be it a byproduct of routine or the dozens of daily activities we cycle through without conscious. Then there are days like today where we run evaluations in hopes to find clarity on what we are dealing with. Without choice, it puts are concerns to the forefront of our minds.

I have cried a lot over the first four years of Jayden's life. Sometimes because I am overwhelmed, others because I am overjoyed. Sometimes both.

I am constantly juggling a crisis of conscious regarding my parenting styles. Trying to find a balance between the old school parenting train of thought (discipline, tough love, consistency, enabling, and the like) and understanding that what we are dealing with in regards to sensory issues and behaviors, simply, is not that simple. Without knowing what exactly we are dealing with and more importantly, how to address it, it's like trying to juggle with your eyes closed.

This is not a plea for sympathy, but a testimony to what Gena and I, as well as many other special needs parents are facing day to day.

My shoes may not be polished or perfect, but they fit me just right.

Wednesday, June 25, 2014

Preemie Dad Updates

Just wanted to give you all some updates on a few of the dads who have been contributors to the group...

Joe Mata

Going on 2...WOW! 

On the 29th of this month, our little warrior will be celebrating his 2nd birthday.  I can't help, and it happens quite often, but think about the battles he has fought at such an early age.  I find comfort in the thought that our son will never remember the pain of IV after IV, all the needle sticks, the time alone in his islet, and on and on. But I also sit and think about how far he has come. From a 26 wk old micro preemie weighing 1 lb 14 ounces, with grades 3 and 4 brain damage, to now a 35 pound active bundle of a boy. He has been receiving physical and occupational therapy since he was 6 months old. He had speech therapy for a few months but quickly 

The therapy continues and he is progressing week after week, but every day is a blessing and we find something new to be thankful for.  He is not walking yet, but that does not stop him from going everywhere and getting into everything.  Isai is becoming very vocal and is quick to show his disapproval when he does not get his way.  He still has a long road ahead of him. As much as he is progressing, there are things he still struggles with.  He still has difficulty using his right hand and arm.  Things like reaching and grasping still present a challenge but he is determined to overcome. 

Though the road ahead is still long, I know that with God, nothing is impossible.  I know in my heart that our son will grow to be perfect, the way he was meant to be.  To the regular person, Isai is a normal, happy go lucky little guy.  To me, he is my hero.  

Rob Berry

Our daughter Hazel recently turned three. She is a former 24 weeker and has come so far. Hazel loves to read books, play outside on the trampoline and enjoys making all sorts of Playdoh creations. She knows the alphabet like nobodies business and can spell and read 10-15 words.

Hazel is heading to preschool in September where she will receive speech-language assistance. She is a happy, healthy, 'normal' three year old. The NICU was such a scary time in our lives but seeing our little girl thrive makes it all worth while.

Jordan Stowe

Adeline Marie Stowe was born at 3lbs 12oz, and is now a very healthy 19lb thirteen month toddler.  She is getting on track with her milestones.  It has been a very challenging year for us, and since the NICU.  She is definately finding new lessons to teach us each day.  Her pediatrician remains happy with her progress, as well.  

Addie is just full of life and loves to laugh at everything.  We have spent a small fortune on elaborate toys and stuffed animals, but her favorite toys remain my car keys and our smartphones.  This fathers day I'm looking forward to spending it with my wife and daughter, Shanna and Adeline.  

Last fathers day, Addie had just come home from the NICU and it was very interesting to say the least.  But, I was with my new formed family, and now, that's all that matters in this world. 

Joel Brens

It's so strange how your life changes as your child grows out of the "preemie" stage, with milestones and obstacles steadily changing. We have come a long way since Jayden was born seven weeks early. It's fair to say we all have learned and grown as a family; Gena and I as parents and Jayden as a growing toddler. 

I am so tickled by Jayden's progress, especially over the last six months. To think about where we are in regards to Jayden's speech as to where we are when we started Early Intervention services when he was two is mind-boggling. While he still has a way to go, it doesn't put the weight of the world in stress on it like it used to.

Jayden is making new friends at his preschool extended school year program, and he will be back with his same teachers when the regular school year comes around in August. We certainly feel blessed to work with amazing staff.

Thursday, May 22, 2014

The Elephant In The Room: The Reality Of Dads Guilt

Recently I shared a wonderful blog written by Tatum of Ain't No Roller Coaster about the reality of Mom Guilt. It's something a lot of moms can relate to. Guilt is an understandable feeling that moms feel about their preemie children. Could I have done something differently? In so many ways, though, it also forced me to look into the mirror and accept a reality that a lot of dads need to accept and work through as well: Dad guilt is a very real, very raw, and very concerning issue most dads wouldn't dare speak of. It's too taboo to talk about it. Well I hope to end that misguided mindset.

My name is Joel Brens, the father of a happy, healthy, active, and growing  4 year old, and I struggle with dad guilt on a daily basis.

I spent a majority of Jayden's 25 day stay in the NICU as a glass-half-full positive thinker. While I was scared, I was thrilled about being a dad. The fact that Jayden didn't have any major obstacles or setbacks made it a lot more manageable than I had prepared for.

My guilt stems from the journey beyond the NICU. Becoming the dad I had hoped to be when we first found out we were expecting has proven to be much more difficult than I first thought. Perhaps an explanation is warranted.

A perfect example would be the choice to be a stay at home dad instead of keeping Jayden in a daycare over the last couple of years. After two failed attempts at daycare providers, we decided to keep Jayden home with me during the days to ensure he was being watched after properly. There are some benefits of having him stay at home, but I often wonder if he had had spent more time with his peers before starting preschool if he would be farther along with his progress in relation to his speech and communication development. Where do we draw the line between what's best for us as a family and what's best for Jayden? I feel guilty that we robbed him of crucial peer interaction at a valuable time in his life. Perhaps it wouldn't make much difference, but I am left to constantly question whether we made the right choice.

Guilt manifests itself in other ways as well. Jayden is making noticeable progress in his development, but he still has a ways to go. Most days when I look in the mirror the thought crosses my mind, "Am I doing enough?"  I know that Jayden is not wanting in regards to affection, he knows his daddy loves him to the moon and back, but I constantly wonder if I am doing enough. Am I doing enough exercises with him to practice his reading and communicating skills? Every day we work to get closer, to make progress, and the progress is tangible. But the guilt I feel about the dad I am and the dad I want to be is real. People say "Oh you are doing a great job with Jayden" Am I? Sometimes my patience is paper thin, sometimes I don't have the energy to give him the attention he deserves. But we keep forging ahead. Surviving day by day.

It's difficult to explain to others that I'm carrying dads guilt around with me every day Jayden is working to catch up to his peers. I know that his progress stems from my efforts as much as his team at preschool. But I still struggle with guilt because I so desperately want Jayden to get over this hurdle, as it will benefit all of us.

Fellow dads- dad guilt is real, don't be to proud to acknowledge it. Perhaps understanding what you are dealing with will help you manage the journey of parenthood better.