Vacation Here I Come!

Friday, August 12 is the last day of summer session, I’m really happy about that. We return on September 6 and the students return September 8. It will be an exciting back to school time; my school is moving to a brand new building. We’ve been packing up the nursing office this summer and it’s been interesting what one finds when cleaning out cabinets and closets. There was a large box of medical supplies that the packaging had turned yellow as well as the item itself. They were obviously expired and unusable, so off to the trash they went. Those supplies go way back to before I was hired, I can only imagine how old they were. And why so much? There are some nurses who hoard supplies. I’m thinking my predecessors were such hoarders.

When I first began packing I thought we would have just a “few” boxes. Ha! I couldn’t have been more wrong. At last count there were 18 boxes and I’m sure there will be a few more before the end of the last day. I had to call parents to pick up their child’s medications. They, the parents understood we were moving and couldn’t leave meds with us until September so they came today and other parents will arrive tomorrow.

Enough about work, I’m itching for the hours to fly by! My day hours at school usually pass pretty quickly, it’s the after school program hours that get me, especially lately. I’m just antsy to begin my summer vacation time. I took the day off yesterday and Tommy, Lelly and I went to the beach. It was really nice, the weather was clear and sunny and hot. The sand became very hot later in the afternoon, the kind of hot that makes you want to hop from one foot to the other or just run across the beach right into the water. Tommy and I walked very, very quickly down to the water which was so refreshing. I have to say though, taking a day when you have 2 days left before you are off is like a tease. Plus I felt like I was playing catch up when I returned to work. Whatever. It’s over and done. And after today we have one day left !!

Going Backwards for a Minute

I was talking with a coworker today about the parents of the students we care for. We talked of the fact that many parents do not make arrangements for their child after they leave the school we work for. I remember Thomas’ first IEP meeting at my school years before I even dreamed I would work there. The school team asked Tommy and I what our plans were for Thomas in the future. I remember feeling very unprepared for that question and we didn’t know how to answer them. One person said, “I suggest you write down group home placement; this question is your plan for when Thomas leaves this school.” Tommy and I were in agreement that that seemed logical and agreed. In the meantime one of the pastors from our church who has an adult son with autism had phoned me to gently suggest we place Thomas on the waiting list for group home placement. Thomas was 12 years old. Pastor Larry said he knew how old Thomas was but time passes fast and the list was long. Tommy and I agreed and I called the appropriate agency to ensure he was placed on this list. It was probably one of the best things we did for Thomas at that time.

When I was telling this to my co worker she mentioned how hard it is for parents of special needs children to open up to social workers, case managers, IEP personnel, etc…. Life is hard enough caring for that child; you then had all those people up in your business asking a ton of questions just so you can access services for your child that he/she is entitled to. I mentioned that it took years for me to allow an outside worker in my house. But that when I did allow a direct service provider in to my home it was a great experience for not only Thomas but my girls as well. I hadn’t thought of my hesitance to allow an “outsider” in my home in years. And I also hadn’t thought about all the interviews and in depth, personal questions I answered and endured just to get the worker set up to work with my son. Our conversation took me back and I didn’t realize it until I returned to my office and sat at my desk and was “back” to my now reality.

This was the second conversation I had with someone I work with about Thomas. How decisions Tommy and I made years ago were not about us as his parents. They were decisions made for what would be best for Thomas and our other children as well. Every family situation is different. However one thing that is constant and universal is that none of us are going to live forever. And that reality stings and is scary. I do not expect our girls to take care of Thomas when Tommy and I are no longer here. That is one of the many reasons why Thomas is in a group home. Planning for the future when that future is not what you had originally planned for is difficult. Tommy and I were fortunate that we had people in our lives who had the incredible, caring nerve to tell us what we should do for our son for his future. We are also fortunate that we chose to listen to unsolicited, well meaning advice. That we didn’t balk and get upset and rebuke people who were really in our corner.

I find there are parents who refuse to discuss the mere thought of group home placement. As if the words “group home” are not to be mentioned at all because their child will “never” be in a group home. The same goes for day programs, Thomas likes to go to his program, it gives him a purpose. Yet when I mentioned which program he attends to another parent, that parent shut down the conversation because that program wasn’t what that parent wanted for their child. We all want the best for our children. Whether that child be special needs or a typical child. And there are limits to what some day programs can provide. On the other hand there are criteria that must be met for the student to attend certain day programs. There is no one size fits all.

I found the conversation with my co worker and the emotions it brought up to be a reminder that some experiences shape the future if you let them.

Sunday’s Starring Thomas

Thomas comes to our house every Sunday. It’s his schedule, every Sunday from about 1:30/2:00 to 6:00. He doesn’t like to come any other day but Sunday. I once had him over for dinner on a Monday evening when Sunday didn’t happen. I picked him up after work. It didn’t go well. He was more high maintenance than usual, very needy and I think we all couldn’t wait for him (Including Thomas) to go back to his house after dinner. After that, Thomas told me, “ no more Mondays mom…no more Mondays. Only Sundays.” No problem. And we’ve stuck to that schedule ever since.

Today after I picked him up, Thomas told us all about his Saturday. The staff took the residents to the Safari at Six Flags and then to eat. I thought that was really cool. I’ve never been to the Safari, I enjoyed hearing about the animals they saw.

Some Sundays are more challenging than others. Even though we only see Thomas once a week he still knows how to push buttons. And on more than one occasion the short time he was here seemed like forever. I love my son don’t get me wrong but he can be a handful. He has a memory like a freaking elephant and will hold nothing back to tell you his perception of things that have transpired in the past. Last week Thomas blamed me for calling an ambulance for him years ago. His memory that is usually so fail proof must have blocked out that he was out of control and violent and I had no choice but to call 911. I reminded him gently that I had to call an ambulance for him and why but he would’t hear it. I on the other hand refused to be blamed for defending myself. I dropped him off feeling a bit, I don’t know, not traumatized but more defensive I guess. I know what I did was the right thing to do at the time.

Today Thomas was a pleasure to be with. No deep reflections on the past from him or me defending my actions. Mostly talk about the Safari trip and telling us how much he enjoys his new clothes that he purchased with recent birthday gift cards. You know, I don’t dwell on the past with Thomas. Things happened that I’ll never forget, but I have forgiven him. I would never be in the place I am now without forgiveness.

Almost Done…

There are 5 remaining days to the summer program; but who’s counting; everyone. I’m counting definitely since I signed up to work the after school program from 3pm to 6pm. And it’s only until 6pm when all parents pick up all their kids on time. When the parent runs late I have to stay until the last student’s parent arrives for them. I’m still astounded at the rudeness of certain parents who take advantage of coming late to pick up their child. Especially since their child has been at school all day and until 6pm. Seriously?? You’re late again??? Omg. I’ll say nothing more.

Other than the daily parent rudeness I don’t mind working the extra hours. It’s extra money which is always nice so no complaints there. I am tired though. I’m antsy for my summer to begin. Summer program lasts until August 12 which falls on a Friday, WhooHooo! None of that last day being on a Monday bull shit, thank goodness. Samantha and I are going to the Jersey Shore for a few days the first week that I’m off. We’re staying at a bed and breakfast about 2 blocks from the ocean. It’s going to be nice. The town we are staying in is quiet without a loud boardwalk, Yayyy! And Samantha and I are both cool with that. Asbury Park is a 10 minute walk away so we visit the boardwalk there. It’s not crazy busy and loud and that’s ok with the both of us.