I had an idea about a month ago to reach out to some local families with kids/family members who have disabilities to see if they’d be interested in letting me take some lifestyle photographs and write a bit about the challenges they face and the obstacles they’ve overcome. I was so excited when Jade said she’d love for me to tag along to one of Dean’s therapy sessions! He does Physical Therapy, Occupational Therapy, and Speech Therapy every week. I hadn’t ever had the privilege of photographing Dean before that, so I was a tad nervous about how he’d feel about me following him around with my camera. To my surprise he really got a kick out of me being there! He worked soooo hard (which I’m sure he always does) and kept flashing me the cutest grins.
I’ve known Dean since he was just a little baby. He’s a sweet, handsome little man with a handful of diagnoses. He was born with PPHN or Persistent Pulmonary Hypertension in which blood is forced away from the lungs due to high blood pressure in the arteries that go to the lungs. This was caused by a blot clot in Dean’s umbilical cord. The PPHN caused a lack of blood flow to Dean’s brain, resulting in another diagnosis of Hypoxic Ischemic Encephalopathy (HIE). With this diagnosis came the diagnosis of Moderate Intellectual Disability - this will develop/change as he grows and gets older - it will all depend on how well his brain grows and develops. Because of the HIE, Dean has episodes of myclonic seizures and myclonic twitching (which resemble seizures but he is able to keep eye contact and will try to follow commands/stay engaged when the twitching is happening). When he is seizing and/or twitching, his body uses up more calories than he’s able to take in, which has caused some issues with weight gain. Thankfully he had a G-Tube placed and is growing steadily now. He has Spastic Quadriplegic Cerebral Palsy. Cerebral Palsy (CP) is a group of disorders that affect a person's ability to move and maintain balance and posture. CP is the most common motor disability in childhood. Spastic quadriplegia is a specific type of spastic cerebral palsy that refers to difficulty in controlling movements in the arms and the legs. Those who experience this form of Cerebral Palsy will not have paralysis of the muscles, but rather jerking motions that come from stiffness within all four limbs.
After our session I had Dean’s mom, Jade answer a series of questions for me. The questions I posed to her are in bold, and her answers are written below each question.
What are some of Dean's biggest challenges? What tools do you have to help him with those challenges?
His biggest challenge right now would have to be communication-I feel that he can understand most things to a point and that he knows what he wants-he has a hard time communicating his wants and needs. He can get really frustrated with this and so can Justin and I. We are working with him to use an app on his iPad for a communication device. He started using this at therapy in Beatrice and he has been doing pretty good with it, so we are going to start to use it at home as well. Another challenge I would have to say would be that he really wants to be "one of the kids"-this is hard for us as well. It is hard to watch him watch other kids and I can tell that he just wants to get down to go play with them. He has a gait trainer that he uses at therapy and at home. He also has an amazing babysitter and daycare friends who make sure that he is involved with activities throughout the day. When he is in school, he has adaptive equipment to make sure that he is involved with every activity throughout the day.
What is one thing you wish you could tell the whole world about Dean or his condition? Do you have any frequently asked questions that you feel like you answer all the time?
I really don't have just one thing to say. I just want people to ask, don't stare...if you have questions, ask.
Dean is a person, he wants to be noticed and included. He may not be able to tell you this, but if you take the time to pay attention, he will show you.
Oh and yes his glasses are real, I would never make my lil guy wear fake glasses just because they are cute...
What is one of his accomplishments that you are most proud of?
Oh, I would have to say almost all of them. When he was first diagnosed in the NICU and the were explaining to us what we should prepare ourselves for-they basically said that he would never get to the point where he was when he hit 2 years. He has well succeeded that and is continuing to amaze me everyday. I admire his will to strive for doing the things that we take for granted everyday-and he does this with his smile that melts the hearts of so many 90% of the time. Dean makes me proud everyday. I am one lucky Momma to get to call him mine!
What do you feel is the most important thing that you've learned since becoming Dean's mom?
Never back down and never let a doctor tell you that your gut is wrong. Always follow your "mom gut" and never stop fighting for your kid!
My goal is to do 4-6 of these sessions a year. I offer one hour sessions with 5 digital images in exchange for the chance to share you or your kiddos unique story here on my website. If you are interested in participating, please fill out the form below.
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