So why does it still upset ME that the boy won't participate in things? He isn't upset by it at all? He told us yesterday and this morning that he was not going to hunt eggs. And he stayed true to his word. He did not hunt eggs. He knew that no one was going to share their candy with him and he was okay with that. He even helped his buddy get all of the candy from his eggs and never once asked for any. His buddy was kind enough to share. After the egg hunt at church we went to Bass Pro Shops to let them blow off some steam and feed them before bringing them home. He wouldn't do the craft nor participate in this egg hunt either. The one there was even more calm-get a bag, find 5 eggs (all over the store) and trade empty eggs for a bag of candy. No crazy egg grabbing....no running..."no thanks," he said.
I am guessing there are 2 reasons why it upsets me. The first is I am sad that he doesn't have the same memories as I did as a child. I LOVED egg hunts and getting my picture with the Easter bunny (well once I was old enough to not be afraid of strangers ;) I loved making crafts places and doing all of these things and I wanted to enjoy them with my kids too. And I should be thankful for the one that does like to do these things. And I am...just sad that it isn't both.
Which leads to the next reason. It is yet another glowing reminder that he is different. And not that different is less. It is just different, and some days that makes me sad. And it is okay to mourn what I don't have, so long as I don't dwell on it and can celebrate the things we can do. For example. He attended the egg hunt without a meltdown. I know for some families that would be a small miracle in and of itself. He very clearly stated that he didn't want to hunt eggs, and we did not force or try to coerce him into it. He went from that "chaos" to Bass Pro Shops that was a little more chaotic and got even more so by the time we left. He didn't have to walk around with his hands over his ears all day. He didn't require any special sensory things. He wore his hoodie over his head to block some sounds and otherwise was pleasant to be with all day. He even told the waitress what he wanted and ate it when it came, which he picked out all by himself when he looked at the menu.
He is a dear sweet little boy and I love him so much. I pray that he doesn't even think my disappointment in situations is disappointment with him.
I have had similar times in my life when I was disappointed that my son didn't want to participate in something. recently, he decided not to go to the school carnival. At first, I felt bad, but then I realized how awesome it was that he could tell that he couldn't handle the carnival that day.
ReplyDeleteAnd that is what I focus on. The fact that he can verbalize to us what he wants to do. And it's okay that he doesn't want to participate. There is no test at the end of childhood that fails them for not participating in everything that comes along. And I should really adopt the attitude that if it doesn't bother the boy then it doesn't bother me. And I can do it most of the time. Just not every day ;)
DeleteI feel the same way about birthday parties. I didn't get to do a ton as a child since both my parents worked outside the house, etc. But after having the first meltdown at a birthday party at which my son knew everyone, I had no idea how to process this. He cried literally the entire time and refused to play with anything or eat anything.
ReplyDeleteThen, another birthday party... this time, it was bustling with kids and immediately, I could sense it just overwhelmed him. He just stopped in his tracks to see kids running around, sounds being too loud... and he kept saying he wanted to go home and he looked panicked. I made him tolerate it for a little bit and it was not good. He was the kid out of seriously 30 kids in one room that could not sit still, kept touching everything within reach at the table and ran up to open up presents with the birthday boy (i mean, ran up there and without pretense there he is just ripping it up until I stopped him).
So, then... there was one more party across the street at the neighbor's house with just 3 other kids. It is horrible. he comes home and cries and won't tell us what's wrong and then he tells us to hide the transformer he got as a party favor.
So, my husband and I had an argument about birthday parties. I said, "see, he just can't do them. they're just too much." my husband said, "he just HAS TO LEARN to deal with it." And I'm sitting there, "but can't you see it stresses him out, that he is not able to handle them?!"
Just at Easter when it was just us at home this year (our families live two hours away) it was great because we didn't have to deal with sensory overload and having him recover for a week from being away from home.
But at the same time, I was thinking of how very alone I felt. Feeling anxious because we're not really sure if and when we will have another child. He's an only and not growing up with traditions at home or having a close family, I yearned to start traditions of my own. Though my son really likes the idea of doing some things, a lot of the time, we do something we think will be fun and something will trigger him and we just go home and he's crying and we're left besides ourselves wondering how to help him.
I know my husband gets sad, but he doesn't say it. It's like this grief that comes in waves when you least expect it.
First of all BIG HUGS! I am so sorry you are far from family. That is hard! And I think we will always grieve new things as they come along. It's part of the territory....
DeleteI'm not sure how old your guy is, but it does get better. Thankfully ours is much more verbal now and can tell us things. However, he is now at the age where he knows his "sensory tools" make him different and he is rejecting them :(
Do you have any of the Out of Sync Child books? The one called the Out of Sync Child Has Fun is loaded with great sensory ideas. If your son attends therapy you can see if they have any kind of support group. The SPD Blogger network is also great for support.
Yeah! My sister-in-law who was studying to be an OT at the time of our eval days at the beginning gave us this book! She read it for one of her courses! I just pulled it back out again :)
ReplyDeleteMy son isn't currently in therapy (yet) in regards to his sensory issues, but I've been making sensory diets for him since 2010 or so. He has different needs at different times. I remember the first time we implemented stuff, he always wanted to jump on the bed. Totally fine with me if he gets the input he needs. I had us play outside in the winter everyday for heavy work and worked on getting him to be okay with different textures (see 'The Haircut' on SPDBN)! He's come a long way and with his speech (but that's a whole 'nother story) :) Thanks for sharing this here and on the network!!
UGH! Haircuts...what a nightmare for us for SOOOO long! I did like your post about that! ;) If you can get him into therapy ask if they do the Wilbarger Brushing Protocol. That was night and day difference for our son. We were lucky/blessed that (when we had insurance) our insurance paid for the 1st 20 visits right after he was diagnosed. We got the last one in just before my hubby's insurance was canceled from him losing his job (school canceled the music program-and thus his job). We currently have our kids on medicaid-which will only pay if his delay is 50% or greater. And he's 6 but testing at a 4-5 year old level in fine/gross motor so no help. And the public school was of no use when we had him tested at age 4 so he isn't going there, and I have friends that work in district and he wouldn't get anything if he went there anyway :( He's too smart, they tell me. Thankfully I have the world's BEST mother-in-law and she has helped us pay for his OT for the last year :D
ReplyDeleteKeep fighting the good fight-our kids are worth it ;)
My son is four, and now that he can communicate clearly, he says, "no thank you" to activities often. For me it's better than him having a meltdown (not that he doesn't have these too), but at least, at times, he can communicate what he doesn't want. I, too, wish that life wasn't so difficult for my little one.
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