NICU Dads – Thank You for Being Superheroes!

by Lindsay Nolan

I was scrolling through Instagram at about 3 a.m. while my husband, Danny slept on the couch next to me. My internal clock was a bit off; the NICU does that to you. It was about two weeks into our stay at the hospital and I was deciding on which filters to use to enhance my influx of baby photos. I glanced over at Danny and smiled.

He was sprawled out on the unpadded hospital couch, which was about half the length of his body. His legs dangled off the end of it and he was covered by a light blanket that did little to keep him warm. His pillow was on the floor. I am guessing that it did not provide a whole lot of support and he deemed it unnecessary sometime during his sleep. My hospital bed was too small for the both of us but sometimes the oversized chair in the corner was his resting place of choice instead.

My gaze was suddenly broken by the sound of my phone alarm, a beat we had gotten to know well. It had been three hours since our last diaper change and our baby, Henry’s last tube feeding. Danny slowly got out of bed and said, “I got this, try to get some rest,” as he maneuvered his body to fall out of its stiff positioning. I watched him as he walked down the softly lit hallway to the NICU and as he scrubbed in for several minutes. He called through the intercom for approval of entrance and disappeared into the room.

I saw Danny again three hours later after my alarm signaled for the next feeding. He was sitting on the rocking chair in our area of the NICU with Henry’s two-pound body laid out across his bare chest. They were doing skin-to-skin contact, also known as kangaroo care, which, we were later told; our nurses believed really allowed Henry to thrive and helped in meeting his milestones. Danny fought to keep his eyes open but kept his loving gaze on our baby boy.

I took over at that point as Danny kissed me goodbye, so that he could go check in to work for the day.

To the often times unsung superheroes of the NICU, thank you.

Thank you for stepping up for your child and doing what is best for them, even when it takes a toll on your own wellbeing at times.

Thank you for facing these trials with positivity and strength.

Thank you for being involved; for washing breast pump parts, for ordering room service, for talking with the amazing staff that takes care of your family and for being present.

Thank you for not only taking care of our baby, but for me as well.

Thank you for your love.

Celebrations & Sensory Kids

by Kristina Mulligan

Though the holiday season is behind us, celebrations are year-round. Especially with the nicer weather trying it’s hardest to stay constant and summer right around the corner, get-togethers are becoming more frequent. There are things that are important to remember if a child with sensory processing disorder is a part of your life. While special accommodations are never expected, understanding and compassion are always appreciated. How can you create a loving environment for your favorite sensory kids?

1.Hugs and kisses should be kept to a minimum.
It’s nothing against you – some kids with sensory processing disorders just do not express affection in this way. It’s helpful to wait and see how a child greets or says goodbye to you, they may wave, possibly just say “hello” or “goodbye,” or maybe nothing at all. Maybe, given some time, they may give you a hug or a kiss but it shouldn’t be expected.
Parent Tip: I usually ask Flynn how he would like to say hello or goodbye to someone, that way he is in control of the situation. If it makes them even more comfortable, you can even get creative and bring things along that your child loves (like stickers or drawings that they have done ahead of time) to give to those at a gathering, if it’s appropriate.

2. Leave discipline up to the parents or primary caregivers.
It’s possible that quirks that you find unusual aren’t uncommon at home, so the people who care for the child will likely know how to handle the situation. It’s even possible that some behaviors are indications of something else, so there are specific remedies.
For example, my son is constantly putting items in his mouth because he craves oral sensory input. To anyone else, an immediate response may be to yell at him, but loud noises frighten him. It may also be instinct to force your hand into his mouth to retrieve the object, but due to his sensory aversions, this may cause setbacks within the progress he has made. As his parents, we understand the most positive response to situations like this and it’s ideal to leave it up to us. 
Of course, if there’s ever a question of safety, that should always come first!

3. Some situations may be overwhelming, so be patient.
For some children, loud noises, bright lights, certain colors/patterns, potent smells, or even particular textures may be too much to handle. There may be moments where the parent(s) and child must excuse themselves to regain some stability and calm down. This may happen whenever there’s a trigger which could be at any time, even if it’s inconvenient, so patience and understanding from others is so important.

4. Please don’t take a declined invitation personally.
I’ve had to say no to a lot of events because I know the stress that it would put on my son (or me) to attend. Sometimes, I know in my heart that it’s just going to be too much – too many people, too much noise, too far away. I try my best to be as prepared as I can so that we can do as much as possible, but we just simply cannot do it all. Speaking for all special needs parents who are in this situation: we do not mean to hurt feelings or disappoint. We simply know our limits. 

5. Even an event held at home can be stressful.
Sometimes, even preparing for an event at home can call for a lot of extra preparation. With extra people in their usual space, kids may feel off balance causing erratic behaviors which, for us, can even last a couple of days. It can take its toll at times, so please know that even gatherings held at the family’s home can be taxing and may not happen frequently, or may have to have a limited number of guests.

What it comes down to is this: parents of children with sensory processing disorders are trying their best. We try to approach each situation with love, understanding, compassion, and the best interest of our children in mind. We really would appreciate it if you could do that, too.

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