Our son Hayden is just finishing up his first year of school.  The teachers and aids, whom we really like, have suggested we may want to consider keeping him in pre-K for one more year because of social issues.  When we asked for clarifications, it seems that he gets frustrated very easily, which we know.  It partially comes from his mother (which she admits).  They both have quick tempers.  He does play well with the other kids, and academically is ready to move on.  The only other concern is bathroom issues, mainly that he sometimes requires some help, but that's a minor concern since he'll have help at the new school as well.

Has anyone else had issues with DMD kids being quick to temper?  Did it even out with time?  Hayden hasn't started on steroids yet, but we're expecting his first shipment of deflazacort any day now.  I know that steroids can be said to "turn up the volume" on emotions.  We sort of timed it so that we'd have the summer months to get him started on the steroids and evaluate how they are working for him, and if they are worth continuing.

We have a couple weeks to make the decision on holding him back.  It would be a bit of an inconvenience (no bus to pre-K), but nothing we can't manage.  We're trying to decide what would be best for him.  He has several friends in the class he's in that he would continue on with at the new school, but if its best to hold him back, we'd rather do it sooner rather than later.

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We had to choose whether to hold Joshua back in Kindergarten last year, but we didn't. The main reason is because the kids he was with were his best friends, they already had experience with him and knew about his DMD, and he was happy and involved with his class. If he was to be held back, he would have to get to know everyone in his class again, explain why his calves were enlarged, and get into a new routine with people he didn't know. When it comes to the education part, he was a little below... but not enough to have to do it all again. The moods are there - but because he takes espresso beans for his ADD, the teacher keeps them in the classroom and will give him one if he starts getting emotional, moody, or confronting. Because it's not a medication and only caffeine, she's allowed - and it works. The biggest reason is the emotional stability needed. When they have friends that know and stick by them, the chances of them learning more are higher. He did improve a great deal this year. Emotionally, physically, and academically.
Landon was in his first year of PreK this last year as well. He does not really show his "anger" issues at school the same way he does at home however he does have a few problems with his fine motor skills and some of his educational goals. We decided to hold him in PreK one more year to give him a chance to catch up both socially and educationally. I figured Landon is going to be disadvantaged to some point as it is that I really wanted him to have a little better grasp on other things. In saying this, Landon is one of the youngest and smallest ones in his class and I did discuss and get opinions of his teachers, school counselors, therapist and anyone involved in his education to be sure I was making the right decision. I was also worried about the fact that his classmates really looked out for him and the teacher made a good point to me that Landon makes friends easily (although he is so shy and passive, most kids really take to him and baby him) that by holding him back he will have friends not only in his grade but also a year a head to help him through the years when they go through school together. Good point...it will be nice for him to have a couple friends a grade a head to help look after him. It is a very hard and scary decision to make but just make your decision using your best gut instinct and I am sure it will be the right one. Good luck!
Hi
Steroids really brought out the short fuse in Erik. It took him about a year-18 months to stabalize. Stabalization occurred after we fiddled with the dose (lower than prescribed) and worked with Erik to use his words and how to walk away from a heated situation. Erik is a May baby and we could have held him back, but chose not to because we wanted him to like school and we thought that would be easier when he was in his physical "prime". His first grade teacher wanted to red flag him as someone who needed additional help. I asked her not to because that sets up expectations by the 2nd grade teacher. By the end of second grade Erik was reading and had number sense at grade level and in 3rd grade he was functioning at a 6th grade level. Veronica Hinton's work describes how dmd guys have reading delays. Not necessarily deficiencies, though those are found in greater numbers among our boys. I think part of the quick to frustration among some of our guys diminishes with maturation. Whether or not you want to delay education for the maturation to occur is a family choice.
We've been really lucky with the steroids (deflazacort) so far. We both think we've noticed him being faster at things like getting up and climbing the stairs, and overall he just seems to have more energy. As far as his mood goes, if anything, its improved We've both noticed he's not as quick to tears or anger, and we think we know why. Hayden, like is mother, is a bit stubborn. He stopped having afternoon naps quite a while ago, and refuses even on busy days when he's obviously tired. Now that the steroids have given him more energy, he doesn't seem as moody. We also haven't noticed any difference in appetite. We knows its only been a couple of weeks, but so far the results couldn't be better for us.

We did decide to push on, and put him in Kindergarten next year. There will be extra help for him if he needs it, and we're not at all concerned about his abilities to keep up with learning.

Thanks everyone for your comments.

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