Not Just a Boy

01/10/2022

I created this page several years ago after my son had an incident that forever altered his life. Today, I decided to invite a few people personally to the page; if you are one of those people, I consider you to be part of our journey. We may be close friends, social acquaintances, FB friends, or only know each other through situations. Regardless of how we know one another, we share something in common, and I value our connection.

I believe in sharing our story and continuing to update, even sporadically, to be part of the healing process. Additionally, if I can help one parent avoid what we went through or get help for their child, I will consider my efforts a success.

Welcome to the page, and thank you for being a part of our story.

07/26/2021

Wow, the last time I posted an update was 2019!! I think it’s time for an update. Gavin is now 15 years old and doing wonderfully. After attending a school that was a great landing place for his first year back in a school setting, they ultimately failed to educate him. We hired a private teacher for six months and then he joined her micro-school for the 2020-2021 school year. His teacher was amazing; she “got” him, and he progressed through five grades during those 18 months!

Unfortunately, his teacher took a job in a great private school, all girls, for the upcoming school year. As in past, a school dropped out of nowhere that seems to be the next right place for Gavin and his sister. Something people who don’t have children with learning differences may not know is that private schools in GA aren’t held to any standards. Of course, there are rules from the accrediting bodies, the Department of Education, and the Student Scholarship Organizations, but no one is really watching the hen house. Should a parent wish to file a complaint the agencies will act as an intermediary. The special education community is small, and the complaint process is set up in such a way that parents don’t want to complain because they are fearful of losing their child’s school or being blacklisted from other schools.

Gavin is a joyful child, always laughing and smiling. He’s a fast learner and absorbs information like a sponge. He learns best when information is presented in a visual way and by “doing.” He often tells my husband and me very detailed stories from videos he watched. The ability to retain information is wonderful.

Gavin still faces challenges and we don’t know what the future holds, but we do know he has overcome incredible odds. He is excited about the new school, making friends, and taking new classes.

Thank you for your continued support and interest in his story. I’ve added a few more current pictures.

06/01/2019

You caring is no longer in business. Gavin’s story can be found here: https://www.facebook.com/1294293063984638/posts/1424624210951522?s=537119007&sfns=cl

05/29/2019

From Gavin's teachers this year. He has a fantastic spirit and will continue to make progress.

11/13/2017

https://www.understood.org/en/learning-attention-issues/child-learning-disabilities/executive-functioning-issues/a-day-in-the-life-of-a-child-with-executive-functioning-issues?utm_source=facebook&utm_medium=social&utm_campaign=understoodorg

What's it like for children to have executive functioning issues? See this graphic to find out how problems with executive function can affect a child's daily life.

08/18/2017

08/18/2017

Posted on July 8, 2017

As many of you may have seen via FB, Gavin returned home last Saturday, July 1, 2017. In a previous update, we explained how the program at Genesee Lake had changed significantly over the summer. Gavin was watching 4-5 hours of TV a day. Among one of the many reasons Gavin had to go to a residential facility was his addiction to screens and while we believe they wanted to try to ensure staff didn’t allow that to continue, we couldn’t risk it. Additionally, he was going to have four of the remaining weeks of summer completely off of school – the start in September. Given we have such limited monies left that we couldn’t wait and see if hey were able to change the screen habits and we knew we would be spending resources for him just to “be there” vs. being in an academic setting.
Please know this was not an easy decision as Gavin isn’t ready to be in the home environment without loads of support, but not being in school and watching TV was not a good use of $16,500/month. He did make progress in the amount of time he was there, no question, but he continues to need significant support. Right now that support is me, whereas in Wisconsin he has an entire team. Apologies to all who have emailed, called, texted etc. and hear nothing back. I’m busy all day and by 8PM I’m out like a light.
We have implemented a very rigid schedule that incorporates what Gavin was getting during the school year up there. We spend our mornings on schoolwork and do an activity in the afternoons. As I began to work with Gavin, it became very clear he does not have even the foundations of math. He doesn’t understand the ones, tens, hundreds places. Feeling lost as I am not a teacher, I went to a school store and was spoke at length with a gentleman there who helped me select materials that would help Gavin develop those foundational skills through hands on learning. We began to work with those materials this week. We’ve definitely had some successes and we are building on what Genesee Lake started – his teacher there was incredible. Gavin is still very resistant to education but has followed our schedule and completed his work each day.
In addition to math, we are working on reading, spelling and science (his favorite). This week we build a papier-mâché volcano. It should be dry today and ready for use.
Kyra is also working on schoolwork during this time as she is entering a new school this year. She does her work and art/writing while G&I do his work.
We also do “PE” of some sort daily – Gavin loves to swim so wen it isn’t raining that is pretty easy for us to day. We’ve gone to a trampoline park, the Aquarium and hiking at a nearby park as well.
Gavin and I also went to look at a potential school for him yesterday and we are hopeful. I’ve looked at numerous but none have the supports Gavin needs and the ones that have close to what he needs are extremely expensive – think Ivy League.
We’ve uploaded a video to share a bit about Gavin with you all. It is on our You Caring site under photos and I am putting a link in this update as well.
We thank you for your continued support – the love and kindness shown to us has been and continues to be overwhelming.
https://youtu.be/p0nEYzkPqc4

Where are we now?

08/18/2017

Posted on June 25, 2017

“Changes in attitudes, changes in latitudes, nothing remains quite the same…” Growing up with my mom in Florida, I remember music always playing. Music played at home and in her yellow pinto wagon, with pleather seats, no air, in Miami in the summer! Boy, it was hot but we always listening to good tunes. Being from Florida, it goes without saying Jimmy Buffet was music we listened to a lot. I find myself listening to music from when I was younger, when things were simpler and I really didn’t have to make any big decisions. The music from those times brings me peace and a sense of comfort, if even for a moment.

As I was stressing over what Ross and I perceived to be a change in Gavin, the questions we needed to ask and difficult decisions we are being forced to make that Jimmy Buffet line came to mind. For those non-Buffet fans the end of that verse is “If we couldn’t laugh we would all go insane”. That’s how we are feeling. We are trying to find the humor amongst the frustration and tears.

When I first started this blog/site, I promised transparency. Today, although I have a pit in my stomach and have put this off as long as I can, I am holding up my end of the deal. Here is the raw truth of our "changes".

The last two weeks have been rough. When things become mentally challenging, I find myself listening to music from when I was younger, when things were simpler and I really didn’t have to make any big decisions. The music from those times brings me peace and a sense of comfort, if even for a moment.

As I was stressing over what Ross and I perceived to be a change in Gavin, the questions we needed to ask and difficult decisions we are being forced to make that Jimmy Buffet line came to mind. For those non-Buffet fans the end of that verse is “If we couldn’t laugh we would all go insane”. That’s how we are feeling. We are trying to find the humor amongst the frustration and tears.

When I first started this blog/site, I promised transparency. Today, although I have a pit in my stomach and have put this off as long as I can, I am holding up my end of the deal. Here is the raw truth of our "changes"

Gavin was making great strides as we noted in our updates. The school went to a summer schedule and Ross and I noticed something different in Gavin. For the first day or so we couldn’t quite put our finger on it. We talk to him every night and I am neurotic and take notes during each call. On or around day five, I noticed a trend. Every time we talked to Gavin he was telling us all about the movies and TV he watched. I’m not talking about a little bit (which for a child with an addiction is bad enough); I’m talking about 4-5 hours a day. He sounded flat and disengaged. We would prompt him for things he could have done during the day (based on the schedule we were provided) but none of the listed items seemed to be occurring. For obvious reasons, we became greatly concerned.

After we brought Gavin to the school, we received a copy of the annual calendar. At the time, we didn’t think twice about Summer starting. We had daily schedules and they had been and continued to look as though they would be amazing. Every 30 minutes was planned out. Each evening the kids were doing something that would allow them to interact with people outside the school. Gavin would report excitedly the things he did in school, talent shows, sports he played in that day etc. That all changed when the summer schedule started.

Given our desperation to have Gavin in a treatment facility that met his needs and how long/hard we had worked at vetting programs, we immediately contacted the team at the school. We scheduled a conference call with them as soon as they could accommodate it. Gavin’s psychologist and I (Julie) spoke to the school about our concerns and asked a lot of questions – why were the kids watching so much TV, is this part of the program, why aren’t they going to the farm at all, why aren’t they doing anything with the animals, why aren’t they going off campus, what ARE they doing, when the schedule says group “educational TV” does that include The Mummy and The Mummy Returns (Scorpion). Of course, the school told us this wasn’t how this was supposed to work and they would look into it. They asked for two weeks to get back to us and Gavin’s psychologist suggested that was not acceptable as we are gravely concerned that Gavin isn’t getting any academics and is actually in a harmful environment for what his particular needs are.

We quickly realized they weren’t going to be able to affect change anytime soon. Immediately after that call, Gavin spent one day alone (all the other kids were playing on a t-ball team) and one day watching TV all day. He called us multiple times the day he was alone and we could sense he was bored and lonely.

Ross ran the numbers and the academic hours in the summer were greatly reduced – 154 hours below what two months in fall would be (our remaining funds). We asked if we could bring him home for the summer and return in fall since the program seems to be drastically different in the summer than when school is in session. The answer was – we would have to reapply. We are devastated. For anyone following this, you know we have done everything in our power to get Gavin the services and education he needs. To have this set back is a blow we weren’t expecting.

We are now in a position where we need to bring Gavin home sooner than we had planned, as his medical team and we felt the summer program was not in his best interest. If we kept him there, we would have spent the remaining money we have and not getting the services he needed. For the short time he has been in Wisconsin, we have used over half the monies we scraped together for his four months of care. We are now shifting focus to finding him a school near home that could potentially accommodate him in the fall and a tutor, psychologist, speech and occupational therapist and sports league for the remainder of the summer. We remain dedicated to affording Gavin the opportunity to be educated in an environment that meet his needs.

Ross will fly up this Friday, pick Gavin up and drive back home with him. We thank you all for your continued support of Gavin’s care and of our journey through this thing we call life. We ask you to please continue to share our story and donate if you are able. We appreciate each and every thought, prayer, text, email, phone call and donation. It ALL matters.

08/18/2017

Posted on 06/14/2017

Today I was taking pictures of Kyra and the girls at the Horseback riding camp Kyra is volunteering at, my mind wandered to Gavin. We are able to talk to Gavin each night, which is great as not all facilities allow this. We usually run through the gamut of questions - on school days specifics about projects or work, food consumption, favorite parts of his day etc. Depending on how distracted he is we get a variety of answers - ranging from "I don't know/remember" to explicit stories of the day. The other variable is if we are the first to catch him on the phone that night. If an aunt, cousin or grandparent has beaten us to it he is less likely to be interested in talking to us. At that point, he's had his fill of chatting and wants to get back to the unit activity or movie they are watching - we love the activities - don't love the movies. Gavin has a screen addiction so that is not our preferred form of entertainment.

Anyhow, over the last few conversations, Gavin has said some humorous stuff - in some cases the staff would get on the phone to clarify. Each of the unit staff is really nice.

Onto Gavin’s quips or requests.

Skewed Reality
I have no idea the context of what we were talking about but Gavin had to change rooms due to an issue with another resident. Somewhere in this conversation Gavin says to us “I want my lawyer”. We said “what”? He repeated the same words. As we have shared, our journey has involved quite a bit of legal work. We’ve previously explained our meetings and that this attorney was working to help find the best setting, supports etc. for Gavin. Apparently now this kid thins he has his own lawyer on retainer! Ah kid if it only worked like that!

North vs. South
Another episode was when Gavin was told it was too hot to go outside that day. Some of the kids take meds that make them susceptible to being in the heat. Gavin begged Joe (his buddy in the pictures) to please take him outside. When he got out there, Gavin says to Joe “This is nothing, it’s not hot, I’m from Georgia.” Meanwhile Joe said everyone up there was dying from the heat. Uhm, it’s 85! We are working with the staff to get Gavin outside more b/c he’s right 85 ain’t nothing round here!

Sports gone awry:
In our house the only sport that is actively watched is college football, specifically SEC, more specifically the Florida Gators, Having lived in GA now for 13 years, I’ve come to piece that we will be a house divided. I get that most likely my kids will go to a GA university and possibly root for the Bulldogs (ouch). I expect them to love the Atlanta Braves, the Hawks and the Falcons (no Patriot jokes here). SO we are chatting with Gavin and asking him if he is out of anything or needs anything – he’s requested more books, Legos etc. He says “a new bouncy ball mine broke and cards.” We repeat it as a question “Cards? Like what kind of cards?” He says “Basketball and Baseball”. Of course we are thrilled he is interested in these two sports as he hasn’t had much of a chance to play these in the last few years. So we question further and ask him what teams. Here’s where my kid killed me…” Baseball – Brewers and Basketball – the Cleveland Cavaliers” WHAT????? Who are you and where is my kid? He even whispered it because he knew those weren’t teams that would be accepted down here. We kept that to ourselves, took joy in knowing he is interested in sports and has learned something about each sport from the guys on his unit staff and well, Amazon sells those things so I guess we’ll oblige the kid.

08/18/2017

Posted on 06/10/2017

Before we get into our first “Gavin update”, we want to share how overwhelmed and grateful we are for the support we have received since sharing Gavin’s story. So many people have been incredibly generous. The notes, calls, texts, emails and posts have meant so much to us. Of course, the donations are so truly appreciated.

We can’t believe it’s been on full month that Gavin has been away. For a little boy who previously had only slept over his aunts homes a few times, his ability to make the transition to Genesee Lake and be doing so well reassures us that we made the right decision.

We want to provide an update on what Gavin has accomplished in the short time he has been at Genesee. The most important successes to date are those related to Gavin’s ability to assimilate into the residential environment and his ability to go to school! This is HUGE. He had not been in a classroom in over three years.

We had a conference call with his care team yesterday and they shared that Gavin has strengths in the areas of: sense of humor, empathy for other students, creativity, being physically active and his enjoyment in spending time with others. The school commented he is a very smart young man, enjoys the company of his peers and staff that work with him at GLS. And is great with technology.

Gavin has already begun writing (an extremely non-preferred task), completed a school project on Mars (along with a papier-mâché model of Mars) and presented his project to his class. Additionally, he participated in a talent show. We are thrilled to see this progress in such a short amount of time. He does advocate for himself (some) and requests assistance with his writing when it becomes overwhelming.

We really cannot say enough good things about this place! He has 24-hour care and support. The program (school and living) are fully integrated and very structured. The staff strives to give the children some independence while providing support and ideas for structured activities. Gavin has been able to go out to eat with staff and peers on a weekly basis. This everyday activity for most people is a challenge for kids like Gavin. The purpose of this activity is to have the children learn to operate in society, be able to tolerate the noises, learn appropriate social interactions etc.

Gavin has been able to participate in team sports with peers for the first time EVER! At home we struggled to find a team environment for him. He enjoyed participating in American Ninja Style and Parkour classes but was never able to be part of a team. So far he has played baseball, kickball, basketball etc. Of course we are so happy to know he is getting exercise and playing sports, but we are THRILLED he has friends to play these game with.

We speak to Gavin every evening and he shares stories about his day. He also receives calls from other friends and family on a regular basis. We, Ross, Kyra and I, were able to go visit Gavin last weekend and take him offsite. We picked him up on Friday and kept moving all weekend. We went to the Milwaukee Zoo on Friday – if you ever have the chance to go you should; it’s beautiful. Ross and I were so impressed with Gavin’s level of interest in engagement. Previously, Gavin would basically run through the zoo and be done very quickly. This time he was truly enjoying the animals, reading the signs about them to us and covered the entire park with us.

Lest I forget the restaurant Gavin wanted to take us to. It’s a local chain called Culvers. I liken it to a DQ like place but with nicer seating. He wanted us to go as they serve Friend Cheese Curds. In typical Gavin fashion, he told us we had to try them, as they were “life changing”.

At the hotel we played a card game called “Exploding Kittens”. I thought this game was confusing and it involved strategy. Gavin played the entire game with us and was able to apply some of the strategies.

Kyra and Gavin interacted really well and they were both happy to see one another. It was a treat to watch them enjoy each other’s company.

On Sunday, we found a beautiful local park. The park had a lake, sand volleyball on the lake “beach”, and water sports. Gavin and Kyra chose to do the pedal boats. We fully expected them to be done in 10 minutes but they were out for about half an hour and had so much fun. They also enjoyed watching the dogs in the dog water park area.

Finally our weekend came to a close. We had prepped Gavin all weekend for his return. We knew it was going to be difficult for each of us. We called ahead and worked with staff to ensure additional support was on hand and that all team members were alerted to his situation. As expected, Gavin cried and begged us to not go back. We were expecting this, none the less it was hard for everyone.
As soon as we got to the school, one of Gavin’s care providers met us at the car and Gavin smiled. This was a good sign. She helped us get Gavin’s things inside and we said our good byes there.

Gavin had a very difficult evening and next day but was able to quickly get back in the groove of his schedule. He had a great week and we are thrilled.

We’ve added a few pictures from the weekend and hope to get a video the next time we are able to visit.

Thank you each of reading our update,

Ross, Julie, Kyra and Gavin