Skipping preschool "graduation"--sad tonight.

[MMWG]

Hi all-

thank you for all of the supportive responses from my earlier post this week. My 4 yo son was diagnosed with PANDAS this past December and we started seeing a big difference in behavior and emotions about 2-3 weeks after we finished up antibiotics. We had about 3 wonderful months, where everyone--teachers, parents of other kids, us, my family--noticed an amazing improvement. He was a different kid. Then, a few weeks ago, we saw a horrible fit come out of nowhere, and knew it was time for another strep test, which of course came back positive. We are glad we know how to recognize his symptoms now. We just finished antibiotics this time about a week ago.

Behavior has been nowhere near as bad as it was several months ago prior to diagnosis, but this time we have seen defiance and emotionality again. His teacher could tell the difference as well, and I think we are still on the path to bouncing back from this attack. His biggest issue is that if he decides he doesn't want to do something, there is nothing that will convince him otherwise. So things have been a bit rough around here lately.

Anyway, his preschool graduation was tonight. He has an amazing teacher who understands his condition and is very flexible and patient with him. She thinks he has made great progress this semester, and he will be with her again for pre-k next year. Today was a rough day for him--she told me not to have high expectations, that she thought there was a 50/50 chance he would cooperate tonight and do the program they practiced, and a 50/50 chance he would refuse. She said not to worry about it, that she would handle it and we should try to relax about whatever happened. But the rest of the afternoon was tough at home, and I just decided we should skip it. There will be so many people there--grandparents, family of the other kids--all people that are probably hoping for a perfect little preschool graduation program, and I was afraid we would ruin it. So I called his teacher, and she said of course she would love him to come, but that it was up to us. She understood that it would be stressful for us if things didn't go well with all those people there, most of whom would not understand what was going on with him.

It was a hard decision, but I just decided we should skip it. He didn't seem to care one way or another, and his dad took him to a baseball game instead. I am sad to miss it. I know we really have another year of preschool (pre-k), and maybe next year we will be able to go. This is the kind of thing I love that seems like it should be a no-brainer. But things are always so hard. I see all these other little kids who seem to have no struggles and challenges, and my little guy can't catch much of a break. He is sweet and funny and loving, and has an amazing sense of humor. He is reading and it very smart. His ifne motor skills are horrible--the PANDAS has really done a number on any progress in that area.

He really has come a long way since January. His teacher said to focus on all his progress and not to worry about it right now--that it's a marathon, not a sprint. But I am still sad tonight that we are missing this special event. We have a long road ahead. I just wish things weren't so hard. Thanks for listening to me tonight. Meg

[kimballot]

Please know that we are with you. My son also had PANDAS as a preschooler. There was much that we missed. There were also times I chose to take him to things (like Kindergarten open house from 7pm - 9pm) and later regretted it because people who did not know him saw his behavior and judged him, and did not forget it.

 

Today my son is 13 and, while I missed out on some special "normal" times, he really does not remember much of it.

 

You made the best decision for you son. Try to see if you can find a way to commemorate the end of the year for him - maybe bring treats to preschool next week and take pictures with him and his teachers... then put it in the photo album as his preschool graduation. In 10 years you can tell him that he had a special graduation day... and in 10 years you will still sit back at his chorus or band concert and think how fortunate you are that his PANDAS is managed and he is able to participate.

Edited May 7, 2010 by kimballot

[MomWithOCDSon]

Sorry, Meg. I know it's hard to miss out on one of those typical milestone experiences. You'll probably keep second-guessing yourself for a while about the call you had to make, but trust your instincts. You were thinking not only of your son and your family, but the other kids and their families as well. You did the right thing.

 

We made our preschool graduation as PANDAS had not hit our DS yet, but as the years went by, there were so many similar events where, not knowing what we were dealing with, we tried to "habituate" DS to participating in these programs, being "normal," doing what the other kids did. When I look back on it now, I think we're lucky he doesn't have more emotional scars than he does from all of that. There were the summer camp end-of-session programs where he would stand in the right place and mouth some of the words to the songs and try to pretend to be enjoying himself, with tears running down his cheeks by about half-way through. There was the wedding he was supposed to be the ring-bearer for and became suddenly terrified, and I almost dragged him down the aisle because, having been laughing and goofing around just moments before, it read as simple willfulness and obstinance, rather than a sign of illness.

 

You are wise and fortunate to be so much less clueless at this point than I was! Don't be too sad . . . this too shall pass.

[thereishope]

I've been there. My son skipped his preschool graduation too because of PANDAS. I struggled with the decision to the very end and decided it wasn't worth it to put him a situation that could have caused extreme anxiety and, ultimately, turned him into a side show. It was very hard for me since my older son went to his when he was in preschool and I felt I was depriving him of the experience. But, I also knew it was just preschool. He had a long life ahead of him with many more memories and moments to feel pride. This year, he's in kindergarten and he is recovered. He has had a beautiful year.

Edited May 7, 2010 by Vickie

[Mary M]

I can so relate to your sadness...my daughter's birthday was Wednesday...and it came and went with extreme exacerbation all day and night. We can be hopeful that at least our children may not remember what they've missed...only our mother hearts will carry that sorrow.

 

I'm glad to hear that for some...it does get better...we can look forward to that.

[Phasmid]

Sorry to hear about this, but I understand so much how you really want to avoid a "situation" if it is likely to arise. This made me think (I don't know why really) of my son's 1st Grade music program that he had to be taken out of. We had NO idea what was wrong with him then, but I assumed the worst- Tourette's. He had really bad echolalia (a form of OCD) and when the music started he would mimic the sounds coming from the violin, or the flute or the piano or whatever was being played. It was horrible. He was supposed to play piano, as he was very gifted musically and was playing a very beautiful piece. He decided he couldn't do it. Then proceeded to echo all the sounds he heard. It was horrible...

[Betty04]

If its helps to know, I understand. We did IVIG on my son 2 weeks ago and we pulled him out of preschool for the remainder of the year. He keeps asking for his friends and the school recital that he was practicing for. I guess I keep telling myself that I am trying to invest in a healthier kindergarten year in the fall. But its still hard to miss these milestones!