A while ago I started a project which I had called Project Love. This project is dear to my heart for a few reasons. While I was growing up my family welcomed a young lady into our lives. This lady had exceptional needs, little did I, at 8 years of age, know that this young lady would change my life. She has shown me how to see the world differently. She revealed to me that each person is unique in their own way, no matter what their needs. She showed me how to love people more. She showed me that laughter is truly the best medicine. Because of her, I became involved with an organization called Track 3 where I taught adults and children how to ski adaptively.
One might ask, “Why is this important for this post?” The simple answer is, I started this project because of this special young lady. My goal in this project was, and still is, to bring to light how important these children and adults are regardless of their need.
This is not the first family I have photographed, nor will they be my last.I have asked T if she was be willing to talk about her son because ultimately, she is the best person to explain the struggles as well as the joys she has, and continues, to face. I will let her take it away. I truly hope you can see the light and joy V has brought to his family, but to countless others he has come to know and love.
“There’s Venus!”, say’s my 3 year old son, pointing into the night sky. I look up. He is correct, that IS Venus!Hardly able to put 2 words together most days, and struggling to communicate, my little boy gives me a small taste of what is inside his amazing mind.
Before I get into that, I should start at the beginning of our little boy’s story. A journey that has, thus far, taught us to be patient, and that God works things out in His time, and gives small miracles and grace along the way. I will try to sum up our story in a way that won’t bore you, so I hope you’ll be patient as I write.
My husband and I had tried to have a 2nd child for many years. After much disappointment, we were referred to a specialist. We went through the whole whirlwind of testing, and when the results were in I had a date set to meet with my doctor to discuss. Incredibly, a day before I went to my appointment, I found out I was pregnant! The next day at my appointment, before I had said anything, my doctor sat down and told me the results of my tests and that it was very unlikely that I would be able to get pregnant again. To his amazement, I got to tell him he was wrong. 9 1/2 months later, after a long labour, our little V was born. He was so beautiful, and I remember how mellow and content he was. Personality traits he still has to this day.
V’s first year was typical. I remember being very conscious of his development, making sure he was meeting all his milestones. V was a super content baby, he smiled a lot, was very curious and sweet. At around 12 months all of that began to change.
At around his 1st birthday I noticed V was no longer babbling, waving, he didn’t call me “Mama” anymore, his eye contact was not as good, he would scream in pain when water dripped down his body, he began to scream at singing and loud noises, he would gag on his food, he no longer responded to his name, and my previously happy little boy now cried all the time.
I would try to tell people my worries, but they would try to tell me that it was just bad parenting, that I was too easy on him and he had me wrapped around his little finger, but deep down my gut was telling me something was so so wrong. A fog had rolled in over my little boy’s mind and deep down I knew something was happening, I was losing him to Autism. I can’t even begin to describe the lonliness, and grief and the all consuming worry that your heart goes through.
Over the next year I began to search for help to see get answers for what was happening. I went to eye doctors, hearing specialists, speach assesments, etc. The phone calls, appointments, wait lists, and parent training classes began. I also began to look into ways to support his body and brain. I read many studies on what we do know medically about developmental delays. We added supplements, started new diets, etc. These things helped bring about a little more speech while we waited for a diagnosis.
During this time, I began to notice other things about V that were, well, quite amazing. When he listened to classical music, I would notice that he would not hum the melody, but would hum along with the harmony. When I gave him a new puzzle or shape sorter etc. It would take him only a few times to master it. The first time he picked up a pencil to draw, he drew a cartoon spider, including irises, pupils, eyelashes and many other details. At this point, we had no idea of all the things he was taking in.
At 3 1/2 our little man was diagnosed with High Functioning Autism.
While we sat in the room with the Dr. that had diagnosed him, we had so many questions. Why did he regress? Why did a new diet help? What about this medical study and that medical study? Why was he in so much pain? Could something else be undiagnosed yet? She told us not to ask any questions or read anything. She told us that he was valuable and that he would live a good life. Then directly after that she told me the best thing I could do was genetic testing for Fragile X syndrome, we asked if that would help him in any way, she said it wouldn’t help, it’s so that if we ever got pregnant with another boy, we could abort him, so we wouldn’t have 2 special needs kids.
For weeks afterwards I felt so many things, relieved, angry, sad, but mostly more determined than ever to find someone, or something to help him communicate and feel better while we waited for ABA therapy to start. I was relieved because we finally had a diagnosis, but angry because I was told not to read anything or ask questions. Angry that the Dr. would see value in one child with Autism but not another (I became pregnant with another little boy only a few short weeks later). Angry because I had no answers beyond a diagnosis. Angry because I felt like there was more, that something was undiagnosed yet, and so grieved. Grieved because you have to let go of what you dreamed of for your child, and find new roads and new dreams. Most of all, I was angry with God. How could he let this happen?Why would He allow this? Wasn’t He suppose to be good? Didn’t He love us? Why were we dealt this card, while other parents have many children, all healthy, and typical?
Sometime shortly after his diagnosis, V began enjoying YouTube videos. He was choosing all kinds of learning videos, particularly ones about space. He was still struggling greatly with expressive language, and we didn’t know if he was absorbing the lessons he was watching, or if he understood what space even was, until one day he saw a picture of a planet and labelled it correctly. Suprised, I brought up a diagram of planets, all mixed up. V told me what each one was.
Shortly after, he found globe at someone’s house, held up a tennis ball around it, and started saying things like “waxing half, waxing gibbous” …he understood the moon went around the Earth and had phases!Then one evening, he confirmed to me that he understood it all, when he pointed to Venus and said, “there’s Venus.” That wasn’t all the surprises he had for us, as one evening while watching T.V. Our little man all of the sudden read the caption “Month 6” on the screen. My husband and I looked at each other amazed! Was he memorizing words? Nope, sometime before the age of 4, our son had taught himself to read.
All while this was happening, I kept asking questions, kept studying, kept trying new therapies, and supplements, trying to help V to sleep, speak, and not be in pain. We had no ABA therapy yet and were doing all we could with what information we had. I was still convinced there was something more. If I didn’t understand something, I got a text book or found a website and learned. I began to look for Dr.s that were safely helping parents with children with developmental delays, doctors that were willing to look deeper for these kids. After 2 years of looking, I came across a YouTube video of a doctor explaining everything I had read. I was tired and exhausted from looking. I prayed to God that He would “Help me find a doctor just like the one in the video and help me find someone who will listen”. 15 mins after my prayer I began to study again, and landed on a doctor’s website…turns out, it was the website from the doctor in the video. I decided to see where in the world her office was located….she was 1 hour away. Scared but hopeful, I made an appointment with Dr. S.
To say I was a little scared was and understatement. What if this Dr. was a quack? What if she didn’t listen like the previous doctors? We decided that we needed to listen to our gut and find out what she might find. To my delight, Dr. S was amazing. She listened, she explained things, she did the medical tests to confirm there were in fact several medical issues as well. In time, my son began to sleep again. He began to babble, and acknowledge the people around him. He didn’t cry in pain all the time, and our happy boy began to come back to us.With the help of ABA therapy added in things got better and better. He began to be able to communicate what was in his mind.She also helped with my other children’s health issues, and in an amazing turn of events was also able to find a diagnosis for health issues I had had for many years. Amazing! The journey of finding out what was going on with my child’s health led to a life saving diagnosis for myself. (But that is a whole other story!) The day that happened, I couldn’t help but sit on the stairs and cry. I was so angry with God for all that had happened, but yet through all of it, He helped us find answers for so many questions we didn’t even know we had.
V has been such a blessing to us, and his journey has changed us all in so many ways.
He is such a loving and happy boy, he makes us laugh each day and brings so much joy to our home.
I love seeing the love that the children at school give to him, how he is included and respected. As a family, we have become more patient,graceful, and understanding of each other’s weaknesses.
We focus on the things that really matter in life, and less on material things. We look more to God and less to our own strength. We have more love for each other and for those around us. V’s siblings love him , and accept him for who he is. They have become more kind and understanding around those who are seen as different. It makes me proud to see how they love him and fend for him. However even when the world may see a little boy who is different, as a family, we see him as just our son/brother. He is not “an Autistic boy” he is simply a boy. Autism isn’t the definition of who he is, it is just a part of who he is. Like so many other boys he loves to read, catch bugs, play in puddles, ride his bike, go swimming, to play games with his friends, snuggle in for a story at bedtime, play minecraft with his older brother, and fight with his little brother.
We have truly learned that being a bit different is not less. We have learned to embrace what makes each of us unique. V has really given us a gift of seeing the world in new ways. To enjoy the little things we used to take for granted.
Like everyone else, he has amazing gifts to share with those around him. Through his passion for learning, we have learned so much about astronomy, how the human body works, animals, maps, etc. That we never otherwise would have taken the time to learn about. He also has taught us that love doesn’t need words, even though he can tell us that he loves us now. We try to encourage others to see that just because someone can’t talk well,doesn’t mean that they are not intelligent, or that they don’t understand what is being said, or that they have nothing to say. Most of all, we have learned that God is good. That He hears prayers, works things for our good and He carries you always.
Even when you don’t understand what God is doing, He has a plan for each life. Through all of this we have truly learned to put our hope and trust in God. God doesn’t make mistakes. There is a purpose in everything and a purpose for everyone.
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