When my husband and I have talked about transitioning S to adulthood, it never crossed our minds that he would also need to medically transition. Thank goodness our boys see a wonderful pediatrician who has come to know our family quite well (good thing that both of our boys have some unusual medical conditions which keeps us on the doctor’s radar and requires frequent contact with him). It was their doctor who started talking to us about medically transitioning S.
What does it mean to medically transition a child? It means that before S turns 18, he will be moved from the comfort and familiarity of the Pediatric clinic to the Family Practice clinic on the third floor of our hospital. Let me tell you, this came as a shocker to him that he wouldn’t be in the pediatrician’s office forever. Dr. M has been asking S since he turned 16 when he would like to be moved upstairs. S’s response is always the same, “When I have to leave, then I will go.”
Medically transitioning S also means we need to look at his specialists and determine how long they will continue to follow him. Part of the reason the Army sent my husband to this duty station here in Virginia is because we would be near a large military medical facility which is where his specialists are located. We have been so blessed by the care our sons have received there. S, in particular, has been especially lucky because he has been followed by the same specialists for 8 ½ years. That is unusual, and we know it. The best part has been that the specialists have talked to each other and the pediatrician. Mom and dad don’t have to be the medical messengers!
S recently saw Dr. M for a physical, and Dr. M outlined his transition plan for S.
1. S needs to stay in touch via Relay Health for any questions/concerns. Dr. M made sure that S had his own Relay Health account established more than a year ago.
2. Come back to visit in November for one last visit prior to turning 18 in December.
3. Dr. M will finish a summary about S that he has already started in order to pass that information onto the gaining doctor up in the Family Practice clinic. When S heard that Dr. M was writing a summary about him, he told Dr. M, “We can just bring the 3 ring binders my parents have about me and put them on the doctor’s desk for him to read.” Dr. M laughed and told S that would be mean.
4. Dr. M talked to S about establishing contact with his case manager at the hospital in case he has any issues he needs help with.
5. Dr. M asked about transitioning from the specialists. Because of Dr. M, we have been asking the specialists during visits this past year about transitioning. We are lucky because they will continue to follow S with the exception of his pediatric ophthalmologist who had to reduce his caseload. Fortunately, we have a friend from church who is an ophthalmologist and is going to start seeing him. This same person used to work with the ophthalmologist who previously followed S. Continuity of care is a wonderful thing!
We have so many people who are part of Team S, and we are very fortunate to have Dr. M as one of the team members. He has guided S and us down this other avenue that we hadn’t really thought about. Because of him, we know we are ready for that aspect of transitioning.
Since this transition thing is going so smoothly, you know where I will be….on the couch with chocolate.
Linking up with:
Wednesday, June 25, 2014
Sunday, June 22, 2014
How do I know this? I know this because I live with a child who has Cerebral Palsy which means everything he does takes longer than others (sometimes a REALLY long time) and he also has Attention Deficit Disorder which means he is easily distracted. Hmmm….takes a long time to do basic tasks and is easily distracted. Yeah, God has a sense of humor.
The other day S and I were going to make a trip to the military hospital which is a 15-20 minute drive from our house. Every time we go out there, as soon as he gets in the van and buckles up, I have to start telling him I need his ID card for the gate guard. I have to do this because it will, more than likely, take him the entire time to get his ID card out in time for me to hand it to the guard.
We made it out there, did what we needed to do, and got in the van to drive home. After getting him settled, I handed him his ID card and told him to put it back in his wallet. We drove from the parking lot to the back gate.
“S, you need to put your ID card away.”
We drove through the gate, and he had managed to get his wallet out.
“Put your ID card away.”
He opened his wallet up. We drove to the stoplight.
“Put your ID card in your wallet now.”
We drove a little farther, and I had to tell him to close his wallet. We pulled in the driveway, and I had to tell him to put his wallet in his bag. This is not the first time he has had his ID card out. He is very familiar with the routine involved in this.
What takes him so long? There might be a song he liked on the radio. Or a random thought about _______ (fill in the blank) came up and he had to tell me right then. He lacks the ability to talk and do anything else at the same time. Or he saw something to look at on the street or in the sky. Or he just forgot what he was supposed to be doing with his wallet and ID card that are in his hands.
Because of this child, our family has learned to allow what we call the “S Factor” in figuring time needed to get somewhere. We have all learned to be more patient, and that is not always easy. We laugh a lot at our house because what else can we do?
While he is finishing up _____ (fill in the blank with a task), I will be on the couch with my chocolate.
Friday, June 13, 2014
It has arrived! What an exciting day at our house. I think my husband and I are more excited than the kids because we are going to get more sleep.
Because our youngest son attends public school, he needs to be out the door by 6:25 a.m. Because this same child practices gymnastics 4 nights/week and Saturday mornings, we don’t get to eat many meals with him. So, every morning we get up and have breakfast with him. That means we are up at 5:40 am. I have never been an early morning person; however, I know these years will go by quickly so I am enjoying the moment (that’s what I keep telling myself at 5:40). That doesn’t mean that I won’t enjoy the extra sleep this summer.
[So there is no confusion, our older son does not get up to have breakfast with his brother every morning. He feels there is no reason to get up that early since he is homeschooled. Can’t blame him there.]
I am so looking forward to summer break! When I’m not sleeping in or at the pool or the beach or driving my children around to various activities, you will find me on the couch with chocolate!
Wednesday, June 11, 2014
I used to ask people who were homeschooling why they did it. I couldn’t understand it. My husband and I are from the same small town, and the school system was pretty good. I couldn’t understand why people wouldn’t want that for their kids. I was younger and didn’t realize that all school systems weren’t like our town’s school system.
Fast forward a few years to a time where we have children who are school age and I am asking that question for a different reason. Why do you homeschool? Is it for religious reasons? Is it because it is easier for your schedule? Is it because the schools aren’t good where you are moving to? Is it because your child is having trouble in school? For each family who was asked that question, I received a different answer. This proves that choosing to homeschool is a very personal and individual decision. I am a firm believer in doing what works for your family and your children.
As an Army family (retired now), we started S in a great school at Fort Rucker, AL. He was there for PreK-1st grade. We moved to California where my husband was stationed for 18 months. S attended public school for 2nd grade. Due to the number of issues we had with the school there (that will have to be its own post some day), we opted to homeschool him for the first half of 3rd grade until we moved again. We still had J attend the public school there because his experiences with the school were very positive. We moved to Virginia and have been here since (8 ½ years now).
S started public school here. He finished out his elementary school years in the public school system here. Overall, it was positive for him. We started having issues in 5th grade with getting accommodations in place for his SOL testing (VA’s testing program). When we sat in meeting after meeting trying to get everything in place for him, a staff member told us that this would be a lot like getting ready for middle school. I think she thought she was being helpful. She wasn’t.
I remember going home wondering how much longer I could devote that kind of time and energy to meeting after meeting along with all of the homework that would be greeting us at the end of every day (again, we have another child who needs attention from mom and dad). My husband and I talked about it a lot. I told him that we could take that time and and energy and just direct it to S’s education. After talking to S about it, he agreed that it might be good. We started homeschooling him in the 6th grade and we have been doing it since. He will be a senior next year.
We can’t say that we homsechool him because the school system here is bad, because it’s not. J attends the public school system here. He is happy at school, and it has been good for him.
For us, we had to individualize our plans for our children. One is happy being homeschooled, and it works for him. The other one is happy attending public school, and it works for him.
I’m happy I don’t have to attend meeting after meeting. It’s also a lot less paperwork I have to keep track of. It gives me more time to be on the couch with chocolate!
Sunday, June 8, 2014
It is an exciting day at our house. J now has a learner’s permit!
He realized a few weeks ago that he could take his learner’s permit test on June 7. We hadn’t talked about it much, but he checked into it. He was quite excited about it.
He has studied the road signs. He has read the manual. He has taken the practice tests. His realization is that most of the information is common sense. Because we are on the road a lot and there are a lot of crazy drivers in our area, he has witnessed a lot of bad driving. What may be common sense to him is obviously missing in the majority of the drivers here.
It’s an exciting time period in our house. We are cherishing all of the moments that are fast approaching. I am looking forward to him getting his license so he can take over some of the driving responsibilities. You know what that means? More time for mom to be on the couch with chocolate!!
PS: I just went out with him on a practice drive. We have a large empty parking lot near us, so he practices there. He did drive through the parking lot to the grocery store. He’s doing well for a new driver.
Wednesday, June 4, 2014
I have thought about blogging for a while. In fact, my husband established my blog name for me in December 2011 while I was recuperating from a badly broken arm. We thought I could write while I sat in the chair and recovered. Since it is now June 2014, how do you think that plan worked out for me?
I enjoy reading blogs. I gather information from blogs. I have notes scribbled everywhere around my computer from information I have gathered. Nobody should ever throw out my scraps of paper with “important and valuable” information on them (good thing I live with all guys). I am a blog stalker. I don’t ever comment. Some bloggers have become well-known names in my household. So 2 ½ years later, I finally had to ask myself again: Why should I blog? What could I contribute?
My family has some funny moments, but I don’t know if it is enough to entertain others. Some people don’t get our humor. I don’t know if I could “inform” people about anything.
As we prepare to wrap up our oldest son’s junior year in high school and enter his senior year, we are full steam ahead to transition him to adulthood. Aren’t all parents doing this at this phase of their children’s lives? Our son brings us a little extra challenge(s) given his special needs: Cerebral Palsy, ADD, and some vision issues to name a few. Again, we aren’t the only parents who have had to transition a child with special needs to adulthood. What I have found in my search on the internet is that I can’t find a lot of personal experiences. There are a plethora of resources out there, but you can get lost surfing the internet (just trying navigating your way through SAT’s website looking for testing accommodation information). It is difficult to figure out which ones are needed for my child or which ones he is eligible to receive.
Each child is a unique case. That much I do know. Our son is unique. He always has been, and he always will be. We’ve never been able to tell people about our son. If we start to describe him, he ends up sounding like his needs are much worse than his functional ability. We just tell people, “There are no words. You just have to meet him.”
As my husband and I have made phone calls, surfed the internet, attended workshops, talked to doctors, specialists, etc., we thought maybe we could help inform people or at least let them know they aren’t alone on this journey. Maybe I do have something to blog about.
I will think about it while I sit on the couch with chocolate….