Faces of SPD ~ Meet Caroline
Caroline age 6 1/2yrs was officially diagnosed with SPD at the age of almost 6. We had suspicions of SPD since the age of 3. She did have red flags of SPD as early as 8mos of age. We would make mention of things when in for our well baby visits and I would be told that she was just a very active toddler. At the age of 8mos was our 1st sign of SPD looking back. She would hyperventilate if the vacuum was run in the house or someone would ring the door bell. She never cared for baby food and at the age of 10mos she was on full table food after not having success with purees. Again I was told that not all kids take to baby food. She is definitely a texture eater still to this day. She loves raw veggies but, will not touch a cooked veggie. She was a child that never ate French fries or Hamburgers until she was 4 yrs old. She opted for Garden Salad with no dressing over a kid’s meal. She was and still is in constant motion. I would meet my husband at the door many nights just to hand her off so I could find a quite place to regroup. Knowing what I know now I would have done many things differently with her. It was when she started preschool I had the 1st clues that this was not the behavior of an active preschooler rather there was something going on. Within the 1st week of preschool I was dealing with notes home and the director of the school telling me that she was not doing what the others were doing. It was a long stressful year. Circle time was one of our more challenging areas. She also preferred independent play vs. playing with the other kids. It was then I found the Out of Sync Child Book at the book store. I had gone looking for a book that the teacher has suggested. I looked at the Sensory checklist and instantly knew this is what Caroline had. Everything with her made sense. It was like someone was living my life and knew exactly what I was dealing with.
Caroline is a very bright, happy, loving kid. This has benefited her but, also hurt her in school. She was seen by Child Find in preschool and we were told she was performing at or above grade level so they could not provide services. SO I decided that I would learn all I could about SPD and work with her myself. With their help I was able to come up with a Sensory Diet here at home and at school that made it better not perfect but, better. Last year we were able to get a 504 plan in place for her and while it is not always easy it does help. She now goes to private therapy once a week. I see an improvement in her already. While this will never go away and there is no magic pill to make it better. I feel that I am better equipped to handle things with her. I also know she will learn coping skills that will help her in life. Nothing will ever be easy but, together we work to find a good routine for her.
Her sister Emma 19mos is showing some signs not the same ones that Caroline had so we are watching her closer. She has had the OT from Infants and Toddlers work with her to train her to eat solids. She is very picky eater and we just learned she has trouble processing information. She will receive services 2x a month to help her with her processing skills and speech.
Let’s BAND together!!!
Hiya guys!!! Let’s work together even more to spread awareness! Let us band together to get the word out there. What better way then with Faces of SPD wristbands?! You get to look fashionable while advocating for that sensational kiddo in you life.
Front
Back
The price of these are $5.00 each and the money goes back into the project. There are more areas we need to cover and various expenses with this project; so, we wanted to find a way to both cover these expenses AND do it by spreading awareness. These bands are a wonderful way to do both. At $5.00 each, they are an affordable way to make a difference and show support.
To order yours, email us at brian@facesofspd.com. There is a $3.00 shipping charge on each order. Please show your support and order one. Consider getting a couple as gifts for family members so they can show their support for that sensational child in their life!
Educate the Educators…
Recently, I had the wonderful opportunity to speak in front of a group of special education and some regular education students at Cabrini College. At the end of my first group, one of the professors asked the most poignant question possible and I thank my lucky stars that she had the foresight to ask it… “To these students who will be going into regular classes, etc, what is the best piece of advice you can give them regarding the kids?” THANK YOU!!!! My response was simple… Do not forget about the kids. I realize that there are politics, guidelines and red tape with the schools, but you need to make sure the child’s best interest comes first. Listen to the parents. We are not asking for trips to Disney. We simply want our children to have productive educational experiences and we want the school district to do their part to ensure that is happening. We want to make sure our child is not left behind.
This is NOT too much to ask. It is NOT too much to ask for the school system to do their jobs. It truly isn’t. It IS a shame that we have to fight the schools as much as we do to get simple accommodations for our kids just so they can succeed in school. Trust me, I do not think there is one parent who actually wished or is excited their special needs kiddo had it so hard and experiences greater struggles and obstacles then the rest of their classmates. Believe me, I don’t. I will be the first one to tell you, the extra challenges Dominic faces in school is NOT fun. It is NOT a pleasure cruise to have to go to all of these meetings, etc, JUST to make sure my son can fare well in school, especially since I have another child at home who also needs my time and attention. Nope. Not my idea of paradise at all. However, this is what it is and this is what I must do as a parent. I’m not a super parent. Just a parent. As a parent, you do ALL that you have to for your child(ren).
So parents, I ask you… What is it that YOU would like your school system, teacher, etc, to know about your child. What could they be doing differently to provide a better learning environment for your kiddo? Let’s hear your thoughts…
Signed,
A dad fighting for his kid.
Faces of SPD ~ Meet Kheenan
Raising Kheenan is wonderful, challenging, heart-breaking, frustrating, and exhausting. He is almost four now and loves to play with his brothers, ride his bike, and “go very fast” on our boat. He is silly and funny and loves to pretend he is a super hero. From very early on we started noticing things were different for him and he was soon diagnosed as being sensory avoidant as well as a sensory craver. He smells everything and everyone and he still puts all kinds of items into his mouth trying to seek input. We have to be careful when we are out and we pass by a cork board because he will discretely pull off a push pin and put it into his mouth. I cannot leave hand sanitizer around because he will ingest it. Disinfectant wipes are stored away or else he will suck on them. We are constantly worried about his safety and the safety of those around him. On one side we struggle with his inability to feel pain so we are often finding him with blood, cuts and bruises with no explanation. He will climb to the highest spot and jump, climb over the tops of banisters, and ride his bike into large rocks. However, on the other side, he doesn’t like certain feelings and will panic if he feels his fingers are sticky or if you try to hug him when he isn’t ready for a hug. He is also a sweet boy with amazing verbal skills and will make you smile as you watch him play. But the reality is that his world is constantly teetering between feeling good and feeling unhinged.
If you have a child with SPD you know that there is a certain cry that they have that will break your heart in an instant. It is not the sound of a frustrated toddler or the sound of irritated siblings who aren’t sharing. It’s the sound of a wounded soul who feels confused and frustrated with his own body. He will often become very violent and angry when his body “isn’t right” and despite his verbal strengths becomes unable to express his needs. Eventually, the anger subsides and what’s left is a sobbing, confused, deeply sad boy. I can only imagine how angry I would feel if my body was constantly failing me For us, SPD is a family disorder because every day we are all impacted by its challenges. My dream for Kheenan is that he simply finds peace in his world and that he finds understanding with his own body. I am certain that we will have many more hurdles to overcome, but I know that by continuing therapy with loving and patient teachers and therapists he will have a bright future ahead of him.
100 Kiddo March
Ha! Kidding. I knew it would get your attention! It worked because here you are… 
When this project was first created, we knew we had to set some kind of parameters for it regarding how many kiddos we would photograph. That magical number is 100. One of the other goals we had was to travel to do the shoots, which we have done.
So far, we are a little over a quarter way done. Outside of our home studio, we have done photo sessions in our home state of Pennsylvania, New Jersey, Boston, Utah and Florida. That reach alone is very exciting!! However, there is obviously more work to be done. We have sessions upcoming in Baltimore, next month. Past that, we are looking at NJ some more, Colorado (duh!), Portland and Cincinnati. No dates have been set for those states. Perhaps we may try to get into the south some more or midwest more.
What happens when we reach 100 kiddos? Well, nothing really. We stop shooting for this project. We will continue to advocate and look to exhibit these images. The site will remain in tact. I will continue to blog some. Based on just the kiddos’ stories, you may have like 100 weeks of blogs yet. However, there are other ideas we have, plus our career and family, all that need time and attention, so we will have to wrap this up when we hit 100. Hopefully, during this time and beyond, we will continue to affect people who do not know about SPD and help offer encouragement and support to those just starting on the journey.
I wish to thank you all for your support and encouragement!
Faces of SPD
Baltimore “FACES” Sessions
Ok gang! We are gearing up for our Faces sessions in B’more! We will be there Saturday April 14th from 9am-3pm. During this time, we are booking sessions every half hour.
Here are a few notes about the sessions:
- The sessions will take place in the Fed Hill/Inner Harbor area of Baltimore. Meeting place will be determined via email.
- There is NO fee to participate. Images WILL be available for sale, if you wish to make a purchase. No obligation. Monies from purchases go back into funding this project.
- All participants should arrive shortly before the designated time and be ready to start at the designated time.
- All participants should have the below release form signed and with them at the session.
Again, we are booking sessions every half hour. It is important to arrive a little early so we can start on time. We will do our very best to ensure we are staying within the 30 minute time frame. Sessions will be booked on a first come first serve basis. To book your session, please email us with your top three choices of times, in preferential order. We will do our best to accommodate and will discuss any scheduling conflicts.
Our email is brian@facesofspd.com
Preoccupation with Proprioception…
Ok, don’t let the caped wonder fool you… He can not fly. In fact, he is not keen on leaving the ground. Well at least when it comes to playground equipment. Roller coasters, he’s a junkie. Playground ladders strike the fear of god in him. Not the typical horizontal ones. Those are fine, usually. But any one that requires more negotiating like the one below, where it does not offer the same ease and comfort… those are terrifying. Chain walls too. You know, those walls that are like rock walls but made of chains instead. NO WAY! His adversity to having his feet off the ground get the better of him. He won’t do it.
At a recent trip to physical therapy, his therapist decided to take the session out doors. It was gorgeous out, especially for the first day of February. So, why not take advantage, right? When the weather is nice during PT, Michela and I go to the park next to therapy and I push her on the swings and we play some. This day was really neat because I could watch Dom get pt while I played with Michela. They played some baseball and I was able to cheer him on which was nice.
Dominic and his therapist moved over to where we were and she had him climbing the chain wall. Well in no time flat (about 3 levels up), he maxed out his comfort zone. His knees buckled then clamped tight as did his arms on the wall. He was NOT budging. One of the other therapists who was out with another client, came over (with the other client) for encouragement. So here we were, the four of us, trying to nudge and encourage Dom to go higher; to climb over the chain wall. We ensured him we were there. We talked him through step by step. He squealed. He cried. He yelled. He made other fearful noises. But we were able to get him to climb over.
It was an emotional but very proud moment. I was so proud of him that he was able to get over that fear. Well, at least for the moment.
Meet Andrew & Gabbie
When Brian asked me to write about what life is like having kids with SPD I said sure would love to. But when I sat down and tried to actually put words to my life it was hard. I guess it’s because I’ve never looked at my life with SPD because I don’t know what life is like without it. SPD is like breathing, it always there, we never think about it, we just do it.
Our oldest child was officially diagnosis with SPD when she was in kindergarten. I’ll never forget the look on the Principal’s face when we gave the school district the OT evaluation and explained to them what SPD was. They looked at me like I had lost my mind, thanked me for the information and it was never mentioned again.
Because our daughter trained us well, we knew early on that our son had sensory issues. And while he has the same diagnosis, his sensory needs couldn’t be more opposite than hers. Brushing helps our daughter reorganize herself whereas our son needs a deep massage. Our son is always hugging and touches everything in order to process his environment. After 15 years, our daughter can tolerate a short light hug and her need to smell everything goes unnoticed.
SPD has been part of our family for almost 17 years – brushing our kids; giving our son a deep massage; asking our daughter if we could hug her good night; wearing socks inside out so the hem doesn’t touch the toes; not wearing jeans; not eating certain foods because it “feels funny”; making their bed a certain way; using only one type of blanket all the time and celebrating the day the garment industry removed tags from clothes is life; always unexpected and always interesting.
Precious Moment
I make no secret that I love my job and know fully just how lucky I am to do what I love for a living. There are a lot of people who have helped me get to this point. I get to travel some, which though glamorous, is not always easy and often a necessary evil. My job, however, offers me some amazing experiences and interactions with people. This happens when I travel and while at my own studio. I cherish these moments as much as I do those who help create them.
This particular project, while in no way is a revenue generator for me, is the one thing I am most passionate about. It’s personal. It touches me at the core of my existence. Sensory Processing Disorder has been at the forefront of my family’s life, officially, for 6 years now. Dominic got the official diagnosis in Feb of 2006. The neat thing is that it delves into such a deeper sense of beauty. It speaks to the soul of ones being. It speaks to and displays innocence and purity. It gets to the root of humanitarianism. It takes this to such a deeper level.
As corny or cliche as it is, I am truly a believer in the journey. That is really what it’s all about. I can recall a time when I flew out to Seattle about two years ago to be a contributing photographer for the calendar. Ya know, a lot of times when you are doing something, you are so focused, that you may not realize fully the impact or scope. You may be too close to it to see it that way. However, at one point during the shoot, I took a second and it really hit me just what we were doing there. Just what we were accomplishing and the impact it would have. I started to well up. Like Jude Law says in “The Holiday,” I am weepa (insert British accent). It is truly amazing to be a part of something like that!
I was in the studio for a shoot for this project yesterday. Tricia brought her two daughters in, only one of which would be photographed for the shoot, as she had the SPD diagnosis. I had a lot of fun with her. What a cute little blonde hair girl with pig tails. She was always asking to see what I shot. I really did have fun with her and typically, when I am working with any kind of special needs child, I always allow them room and to take the lead, then gently nudge them to where they need to be or do. She was a very pleasant young girl and cute as a button. I think most of us parents of special needs kiddos, embrace our kids’ quirks. I find them cute and enjoyable and really what makes them, THEM. Its what makes them unique and this is what I often try to capture in the photos, not that perfect smile, etc.
Anyway, we wrapped the shoot up in about a half hour or so and I felt I got what I needed. I captured some really sweet candid moments, some cute shots and a good impact look or two. Tricia and I had some great conversation during the shoot and were really on the same page about a lot of issues, which is always nice to have that experience. So, as we were walking down the steps to leave the building, Shae and I were bringing up the rear. She reaches for my hand, kisses it and says we are best friends. What a precious moment that was. One that I will surely not forget.
“FACES” Exhibit on Tour!
If you are reading this then you know that the whole premise behind this project is to raise awareness for SPD. To realize this, we need to expose as many people as possible to this project, and of course, SPD. With that in mind, we try to share the stories of the kiddos on various pages.
One of the other things we are seeking to do is to tour the exhibit. By creating these exhibits across the country, it puts the info or at least the images, right in front of people who need to know about it. It doesn’t wait for them to read or find the site. It puts it right out there in the open, right in their face. They will see these images before them and wonder what its all about. It’s a very direct way to get the info out there and by presenting large prints, it makes it more personal. They are seeing faces on a larger scale and not just reading online.
So, I ask you, do you know a place near you where we may be able to set up an exhibit, even for a day? Ideal places would be children’s hospitals, libraries, therapy buildings. The places should really have existing traffic and be family oriented. You never know, a mom or dad who may have a child going through what our kiddos are going through, but may be un or misdiagnosed. This could be a game changer!
Our prints are unframed, but mounted, keeping them safe and sturdy but also mobile. We have about 12 prints, but can scale down. We can ship them to anywhere in the US and arrange for return shipment back to us. It would be wonderful if you might be able to help be the liaison in your community! We can provide anything needed – more info on the project, hand outs, you name it… So please let us know!