In honor of October being National Disability Month, I’d like to highlight a family that I had the privilege of knowing and photographing when we lived in WA. Colin is one of a kind; he is a special needs child and his family has been given no diagnosis at this time. No diagnosis means no answers and no support groups. Yet Colin’s family stands firm in their faith, moving forward, to find the best care for Colin that they can provide. As you can imagine, the expenses accumulate. His parents are currently saving money to try to get Colin in a school setting that would be appropriate for his needs; his current school placement is not adequate. They are working with an attorney in a Due Process Hearing to get a private school placement for him that has a skilled staff and resources to help Colin. He is also currently being evaluated by an expert Neuropsychologist…once again, the costs add up.
To help this family, I am offering a limited edition of my Golden Gate Bridge photograph. There will be 10 prints available. The prints will be 8×10 in size and will be signed and numbered. The price of each is $100. All profits of each print purchased will be donated to Colin’s legal fund. Or if you simply have it in your heart to make a donation to help Colin, you can go to his fundraising page and make a donation of your choice. Email me at firstname.lastname@example.org if your heart leads you to purchase a print!
The Limited Edition Print:
As I sit here to write this blog post, no one could ever explain Colin’s situation better than his mother…so I’ve taken a portion of a blog post that Michele wrote about her son to share with you. Her strength is amazing.
Written by Colin’s mother, Michele:
This is my testimony….
My Colin is a special child…. a special needs child. There are many people who have experience with special children and yet each special child is completely unique. Allow me to introduce you to our’s.
Colin does not have a diagnosis. It has been a struggle to walk the road of “disability” with no research, no support group, no idea of what to expect in the future. We have been to many professionals in many different fields. A few years ago we received a clinical diagnosis of Angelman’s Syndrome, which is a rare genetic disorder. Colin matches much of the criteria of this disorder but when we contacted Dr. Charles Williams (the nations leading doctor on AS) through the help of the AS Foundation he responded that Colin was not a match. Colin just wants to be Colin I suppose which means severe to profound developmental delays, severe seizure disorder, communication delay, behavior issues…..
Beyond any labels, Colin is a bright, fun, loving child but any understanding and intelligence that he does have is trapped in a body that will never work properly. His academic knowledge is very basic and limited. He can identify letters, few numbers, colors, etc. His current goals involve identifying coins, more numbers, personal information, safety signs, etc. The biggest challenge is helping Colin to learn new things in a way that is meaningful enough for him to WANT to learn them. He cannot write at all and has extreme difficulty in manipulating even the simplest objects such as jars, fasteners, etc. It is also extremely difficult for him to navigate his environment. Colin has extremely loose muscle tone which means that he needs braces for his feet to keep them from collapsing, he has an unsteady and tremulous gait, and he has many sensory issues relating to feeling his body in space. Our home has been deliberately modified to be very open and clear of any clutter… the school does the same. Colin is also now required to use a helmet at school after a fall a few years ago left him with staples in his head. There are times that he uses a wheelchair because of his limited endurance. Colin’s sensory issues also give his body many mixed signals. He can tolerate mass amounts of pain with a mild reaction for just a few minutes but a light touch is almost unbearable.
Colin suffers from a severe seizure disorder termed Lennox-Gastaut Syndrome. This means that he has multiple types of seizures that are extremely difficult to control even on multiple medications. His last EEG reported that he was having a seizure nearly every 3 minutes…. that equals 240 seizures a day! These are particularly difficult to overcome because every time Colin has one his whole brain has to “boot” back up. It leaves him disoriented, tired and agitated at least. He is taking multiple medications daily to try and control these but each one comes with innumerable side effects such as fatigue, aggression, anxiety, etc.
Colin is completely unable to perform any task of daily living and is honestly unaware of the need to learn such things. For Colin, there is no urgency for him to learn to change out of his pajama’s or brush his teeth, etc. He will cooperate while I dress him, bathe him, etc but that is getting more and more difficult just with his size and the tightness of his muscles. He cannot use the potty independently. I still change his diapers everyday, multiple times a day. At one point, we were able to train him on a schedule but with so much inconsistency at school that skill has regressed. He drools a lot because the muscles in his jaw are so lax that he can’t hold him mouth closed. He can feed himself with a spoon but he has limited control.
The absolute hardest thing to deal with is that Colin has almost no speech. His receptive language skills are so much better than his expressive language skills. The speech he does have is so poor that all (but one, ME!) who encounter Colin are not able to understand a single word he is saying. The fact that most people including teachers, friends, and sometimes his own parents can’t understand what he is thinking, feeling, desiring, needing is very frustrating to Colin. It leads to many attempts to get what he wants through inappropriate behavior.
The last few years, Colin has grown almost beyond our capabilities. He is now almost 5 feet tall and 75+ pounds (that is only a few inches shorter and about 50lbs lighter than I am). It is harder to carry him to bed, it is harder just to help him walk to bed. When I change his diaper his knees smash into his face. He falls harder and his temper tantrums (although they fit his cognitive age) are more exaggerated. His disabilities just stand out more now.
So, why am I telling you all this. It isn’t often that I look at one of my precious children and then begin counting all the ways he doesn’t measure up. I remember a few years ago when I had a very brief interaction with another family at the ID card facility. I played a scenario in my head that the parents were going to have to explain to some young, very sweet girls what was wrong with my son. I remember thinking that I hoped they didn’t just say the requisite “Oh, he is just different,” or “He was made differently.” I don’t know why exactly but that explanation has never been satisfying to me. The Lord then challenged me to come up with a more, acceptable to my heart, response.
I pray the words of Psalm 139:13-14 over my children often. “You created my inmost being; you knit me together in my mothers womb. I praise you because I am fearfully and wonderfully made.”
Well Lord, how can someone who has all these problems and over 200 potential “misfires” a day be so wonderfully made?
I love when you ask the Lord the right question and you actually listen and then hear his answer. He plainly informed me that Colin wasn’t made any differently than he made the rest of us. He still used his own hands to knit that baby together in my tummy. There were no “mistakes,” no “accidents,” no “I wonder what will happen if I do this.” Jeremiah 1:5 says “Before I made you in your mothers womb, I chose you. Before you were born, I set you apart for a special work.” My son was chosen for a special work… a different work than you and I have. There was another son that came to Earth for a special work and his body had to be broken too. It was done for the same purpose we have: to bring glory to God.