Last year for the first time, Matt attended the Annual Field Day at the Washington State School for the Blind. Due to illness I was not able to attend. I promised him that if I was well I would accompany him this year.
I was well and excited to keep my promise, I awoke at four in the morning to prepare for the 3 hour trip to the southern part of the state.
I was ready to cheer on the sidelines and tell him how wonderful of a job he was doing.
What I was not ready for was the sobering experience of seeing so many children and young adults who were blind and visually impaired gathered in one place. I have gained a new level of admiration for their incredible strength. I have appreciation for their simplicity.
For eight years I have told myself that I am not going to treat Matt as if he has something wrong with him. I have pushed him in the name of independence when what he needed most from me was acceptance and support because I fed into the fear of him losing something he lost a long time ago. I have held onto the belief that somehow him not having eyesight means he is unable to have vision. I saw people today who despite living in physical darkness were resilient and bright in spirit because they had acceptance, joy and appreciation.
As we sat on a bench by one of the fountains today, I realized that I haven't helped him to be stronger by forcing him to live in a world he will never fit into. I have in fact weakened him. I held my son and I apologized to him today. I made us both a promise to be a source of strength for him to stand in a world that is dark yet filled with the light of love and acceptance.
Thursday, May 18, 2017
Saturday, December 10, 2016
And The Day Has Come
It started a few weeks ago. On his way out of the door to school he mentioned that when he woke up in the morning things were"blurry". In my own mind I brushed it off as possibly sleep in his eyes until the third time he mentioned it while his father and I were together. I wanted to dismiss him but his dad insisted we listen to what he was describing. This time he called it smoky. Then today, again, he mentioned it and I decided to place my own fears aside and hear him out. His sister stood about three feet from us and he said that he could not see her clearly. He knew who she was but she had "blurry smoke" in front of her.
Today was a day that I have known may come for the past seven years but even with the knowledge of that possibility it was hard. It was hard explaining to my son that he is losing his eyesight. It was hard explaining to him that glasses will not fix his eyes like they have fixed his father's vision. It was hard to watch the tears stream down his face as he tried to explain away what is happening to him. It was hard to remove my own emotions and tell him that even though he may not be able to see anything in the near future he has seen so much and he will always have a picture of people and things in his mind. It was hard to feel and see his struggle. It was hard to see his heart and his spirit so broken.
The easiest part of was holding him in my arms while he sobbed. The easy part was assuring him that he was loved and that we would get through this together. The easy part was explaining that we did all that we could do to make sure this day didn't happen seven years ago.
As I reflect and prepare myself for bed. I am praying for his strength. I am praying that when he loses his sight he does not lose his spirit. I pray he does not become bitter and angry. I pray he continues to see all the goodness in people and in the world.
Today was a day that I have known may come for the past seven years but even with the knowledge of that possibility it was hard. It was hard explaining to my son that he is losing his eyesight. It was hard explaining to him that glasses will not fix his eyes like they have fixed his father's vision. It was hard to watch the tears stream down his face as he tried to explain away what is happening to him. It was hard to remove my own emotions and tell him that even though he may not be able to see anything in the near future he has seen so much and he will always have a picture of people and things in his mind. It was hard to feel and see his struggle. It was hard to see his heart and his spirit so broken.
The easiest part of was holding him in my arms while he sobbed. The easy part was assuring him that he was loved and that we would get through this together. The easy part was explaining that we did all that we could do to make sure this day didn't happen seven years ago.
As I reflect and prepare myself for bed. I am praying for his strength. I am praying that when he loses his sight he does not lose his spirit. I pray he does not become bitter and angry. I pray he continues to see all the goodness in people and in the world.
Thursday, August 18, 2016
Haircut
Today he got a haircut in the barbershop.
Before we went he threw a fit. He cried and stomped his feet yelling that he didn't want to go. He said he didn't need his hair cut.
I asked him to come and sit with me for a few minutes and I asked him why didn't he want his hair cur.
He told me "Mommy I am afraid. I think they are going to hurt me."
I assured him that I would take him to a place where they were experts on cutting hair and that he would be in good hands.
When we first arrived at the shop he climbed up in the chair and I could tell he was nervous because he was squeezing his eyes very tightly. I made sure I explained to the barber that this was his first cut in the shop in a very long time. I stayed close to him and wiped the tears from his eyes as he sat still. soon his eyes relaxed, although they were still closed. I kept offering him reassurances "You are doing a really good job sitting still Matty" and "I am so proud of how well you are doing." The barber joined me in the flow of positive reinforcement and soon he was finished. I was happy when he hopped out of the chair and exclaimed "That wasn't bad at all!!"
He is looking forward to the next time.
Before we went he threw a fit. He cried and stomped his feet yelling that he didn't want to go. He said he didn't need his hair cut.
I asked him to come and sit with me for a few minutes and I asked him why didn't he want his hair cur.
He told me "Mommy I am afraid. I think they are going to hurt me."
I assured him that I would take him to a place where they were experts on cutting hair and that he would be in good hands.
When we first arrived at the shop he climbed up in the chair and I could tell he was nervous because he was squeezing his eyes very tightly. I made sure I explained to the barber that this was his first cut in the shop in a very long time. I stayed close to him and wiped the tears from his eyes as he sat still. soon his eyes relaxed, although they were still closed. I kept offering him reassurances "You are doing a really good job sitting still Matty" and "I am so proud of how well you are doing." The barber joined me in the flow of positive reinforcement and soon he was finished. I was happy when he hopped out of the chair and exclaimed "That wasn't bad at all!!"
He is looking forward to the next time.
Tuesday, September 15, 2015
The Adventures Of Cyber School Part One
It has been two weeks and we survived. After the first two days I was sure we were not going to make it. Now, I think it is perfect for us and I am looking forward to going on this journey with my Matt.
He loves the freedom of being at home and working when he is ready. He is starting to understand that he has a choice and he is making the choice to learn and then play. He is starting to want to discuss some of the things he is learning and his questions are leading us to spending an hour or so lying in bed at night cuddling and talking about everything from words that end with the letter P to what things are living or non living and why.
In some way things are working out just as they should. Today I am hopeful and happy and satisfied with our decision to attend Cyber School.
He loves the freedom of being at home and working when he is ready. He is starting to understand that he has a choice and he is making the choice to learn and then play. He is starting to want to discuss some of the things he is learning and his questions are leading us to spending an hour or so lying in bed at night cuddling and talking about everything from words that end with the letter P to what things are living or non living and why.
In some way things are working out just as they should. Today I am hopeful and happy and satisfied with our decision to attend Cyber School.
Wednesday, August 19, 2015
We Have Decided
It was a tough decision. It took a great amount of thought. We have decided that we will be using an Online Charter School Program for Matt.
Kindergarten was a very difficult year for us, for several reasons. Although we as Matt's parents attended several IEP meetings in an effort to make sure he was getting the resources necessary to have a successful and engaging school year, we found his experience fell terribly short of that. There were mornings I was almost in tears, begging my child to please help me to get him ready for school. There were days I felt terrible for feeling like I "had" to send him into an environment where he expressed he was very uncomfortable. I knew when I found myself bribing him to go to school something had to change.
I already knew from asking questions that he was very uncomfortable with his teacher. One of the advantages of having a child who is unable to see with his natural eyes. is his strong ability to see with his spirit eyes. He can feel when someone is dealing with him out of frustration, anger, duty...etc. He expressed in his own way how he felt his teacher did not accept him for who he was and although she attempted to "pretend" as though she did, he could feel she was not sincere in her effort. He in turn had trouble opening up to her teaching. Therefore he resisted most of what she was teaching although he was capable of learning it if presented differently.
Now, I in no way attempt to pretend that Matt is an easy person to deal with. He can be very difficult. Especially for someone who is trying to get him to walk in the lines of their structure. I use the term their structure because it isn't that he lacks structure, it is that the structure he is working with and understands has been built from his own life experience which does not include some key and critical building blocks that most of us with vision depend on. For example, he lacks the ability to read facial expressions and use it as a guide to someone's emotion. In his world he requires constant verbal cues, he depends on tone of voice...etc. This can become tiring for the person who feels he is constantly asking questions and feeling the need to talk about everything that is going on around him. It can really be difficult for us when we are having a conversation and it does not include him because he feels the need to say what he thinks and it comes off as extremely rude and intrusive. We are working to help him understand how to respect space but forcing him into an environment where he must conform without any regard for his experience is not the way we want to teach him.
So, after a few moths of pondering and considering we feel we can provide a better environment for his kind of structure and make adjustments based on his needs. We will try to help incorporate and accommodate the academic part of his education in our home setting where he is not only free but held responsible. Where he will have people who love him, understand him and have invested in him and will continue to go outside of the box to conform and make it work.
I hope for strength, peace, patience and cooperation in this next chapter of our journey together.
Kindergarten was a very difficult year for us, for several reasons. Although we as Matt's parents attended several IEP meetings in an effort to make sure he was getting the resources necessary to have a successful and engaging school year, we found his experience fell terribly short of that. There were mornings I was almost in tears, begging my child to please help me to get him ready for school. There were days I felt terrible for feeling like I "had" to send him into an environment where he expressed he was very uncomfortable. I knew when I found myself bribing him to go to school something had to change.
I already knew from asking questions that he was very uncomfortable with his teacher. One of the advantages of having a child who is unable to see with his natural eyes. is his strong ability to see with his spirit eyes. He can feel when someone is dealing with him out of frustration, anger, duty...etc. He expressed in his own way how he felt his teacher did not accept him for who he was and although she attempted to "pretend" as though she did, he could feel she was not sincere in her effort. He in turn had trouble opening up to her teaching. Therefore he resisted most of what she was teaching although he was capable of learning it if presented differently.
Now, I in no way attempt to pretend that Matt is an easy person to deal with. He can be very difficult. Especially for someone who is trying to get him to walk in the lines of their structure. I use the term their structure because it isn't that he lacks structure, it is that the structure he is working with and understands has been built from his own life experience which does not include some key and critical building blocks that most of us with vision depend on. For example, he lacks the ability to read facial expressions and use it as a guide to someone's emotion. In his world he requires constant verbal cues, he depends on tone of voice...etc. This can become tiring for the person who feels he is constantly asking questions and feeling the need to talk about everything that is going on around him. It can really be difficult for us when we are having a conversation and it does not include him because he feels the need to say what he thinks and it comes off as extremely rude and intrusive. We are working to help him understand how to respect space but forcing him into an environment where he must conform without any regard for his experience is not the way we want to teach him.
So, after a few moths of pondering and considering we feel we can provide a better environment for his kind of structure and make adjustments based on his needs. We will try to help incorporate and accommodate the academic part of his education in our home setting where he is not only free but held responsible. Where he will have people who love him, understand him and have invested in him and will continue to go outside of the box to conform and make it work.
I hope for strength, peace, patience and cooperation in this next chapter of our journey together.
Tuesday, October 28, 2014
He Closed His Eyes
We were doing our morning routine, getting him ready for school. After brushing his teeth, showering and taking inhaler, he looked at me and closed his eyes. I watched him and wondered if the bathroom light was a bit bright for him. Then he spoke "I don't want to be like this mommy" I asked, "Like what?". Then he confirmed what I knew "I can't see anything it is dark. Am I going to be like this? Is this blind?". The mother in me wanted to grab him and hold him and cry but I knew I had to pull from the mother in me who he needed to be strong and honest. He was brave to ask so I had to be brave enough to answer, truthfully and in a way that a five year old can understand. "Open your eyes." I told him. He opened them. "Look at me" I got eye level with him and I said "It is possible, Matteo but Mommy, Daddy and your doctors have been working hard for a long time so there is a chance that it doesn't happen. This is why you have to get eye care every night and this is also why you have had so many eye surgeries." He asked me if we can stop it. I explained to him that we could not but we did a good job at slowing it down. He looked away and said "Okay mom" and just like that, he was on to the next thing. I took pause, looked at my boy and felt grateful for the tough decision we made to fight for his very limited vision. I am glad we did.
Tuesday, June 17, 2014
Kindergarten
My Matt is going to kindergarten in August.
It is a bitter sweet moment. It seems like time has passed so quickly. I feel like it was just a year or so ago that I was still changing diapers and giving bottles for feedings. Now my baby boy is writing his name and learning the sounds that the letters make.
I sat in the IEP meeting anxious over every small detail. I want him to have a very healthy experience in school. I want to make sure he gets the services that he deserves and that he is not held back because of his impairment. I needed them to know about his sensory issues so that he isn't misdiagnosed as having ADHD. I want to make sure that every person who handles my baby, handles him with care. I left the meeting pleased. I feel like he will be in good hands.
It is a bitter sweet moment. It seems like time has passed so quickly. I feel like it was just a year or so ago that I was still changing diapers and giving bottles for feedings. Now my baby boy is writing his name and learning the sounds that the letters make.
I sat in the IEP meeting anxious over every small detail. I want him to have a very healthy experience in school. I want to make sure he gets the services that he deserves and that he is not held back because of his impairment. I needed them to know about his sensory issues so that he isn't misdiagnosed as having ADHD. I want to make sure that every person who handles my baby, handles him with care. I left the meeting pleased. I feel like he will be in good hands.
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