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Rebe
07-14-2012, 07:28 PM
I hope I'm not the only one with this problem. Maybe I'm just the only one not dealing with it very well. :unsure:

Today was another missed event. This is where I try to include my ds in an activity and he simply can't handle it. This means that I have to "take him out," and I miss it, too.

Today it was a wedding. :( A nephew I've known since he was three and I get along with especially well. So I didn't even get to see his wedding.

The wedding was in a very public place (a huge, loud, activity-filled attrraction in our city -- packed on a Saturday). It was in a quiet room, but by the time we reached it, sat down and tried to wait for 20 minutes for the ceremony to start (it started late), and just dealt with the usual issues of being in an unfamiliar place, my youngest had just about had enough. I had to take him out before he began screaming -- I ended up literally carrying him out (not an easy feat) and sitting with him while he yelled and carried on in the midst of crowds and crowds of people (who igorned him, thankfully). I was pretty much in tears at that point, myself.

I've missed so much. With my oldest, I missed a lot, and now I'm missing out again. Church (countless times), family "fun" times, places we'd all like to go together... It's not just that I selfishly want to "be there" for stuff; but it's hard on my family that we always have to make concessions for what can and can't be handled by the youngest. We cut events short, leave early, or just don't go to a lot of things. Or, we split up the family and either my dh or I will stay home with him.

We're visiting the Lincoln Museum a couple of hours away soon. I know my dh and other dc will love it. I will, too. I'm trying like anything to prepare my youngest. I'm praying, praying, praying that we can actually see things and do things there without his having to be "taken out." I'm praying that he'll be able to stand still or sit still for some of it. I'm praying that his attention span will be long enough to get him through a few hours in what's supposed to be a very family-friendly museum. I'm not going to get my hopes too high. But we just can't postpone everything our family wants to do because of one child, so we're going.

I guess I had thought this frustration and sadness was behind me, after having dealt with it once already with my oldest. I think I'm still in a grief stage of admitting that things aren't "normal," that I'm having to go through it all again, and I can't do stuff that you'd normally do with a child of this age. It's not like he has an obvious disability or disorder to others, either. That makes it worse.

It's helped me to just write all this out. I hope I'm not the only one who feels this way sometimes. It may sound selfish -- I don't know. But when it happens over and over and over and I'm going through it all for the second time, no end in sight ... I'm just still grieving, I guess. :( And I have no one IRL to talk to about this, who is in the same boat and understands.

Sometimes I look around me and all I see are 4, 5, and 6-year-olds who are sitting quietly, or smiling, or laughing, or walking agreeably along ... just enjoying the time with their family. I hate to admit it but my heart sometimes aches when I see that.

Jekka Renee
07-14-2012, 07:32 PM
I don't have any advice, or practical words, just a :group:.

Ginger Lynn
07-14-2012, 07:34 PM
:group:I wish I had some words of wisdom.:group:

Rachel Jane
07-14-2012, 07:36 PM
:group::group::group:

Amy Joy
07-14-2012, 08:20 PM
Rebe,
I don't have advice, but I have a :group: for you. I can also empathize a little. With my dh's illness we have missed countless activities, events, and occasions. We've had to cancel plans, ect. I understand. I wish I could enjoy things I don't get to. I wish I could make plans that I can't.
The only thing that helps is knowing God gave me THIS husband and this situation. Just as He has given you your child. Your other children will learn to have sympathy for those with unseen 'disabilities' or differences. They will learn not to judge by only what they see. They will learn to cherish the times you all can do something together. They will be stronger and better because this is THE family God wants them to be in.
I'm so glad you feel free to share your thoughts and emotions because you are in a hard place and it's not easy. And you are so right when you say you are grieving. I have grieved the husband I used to have, the family we used to be. I have grieved how spontaneous we used to be. I have grieved all the 'things' we have missed. Then I try and move on and praise God for all I have now. I know without a doubt that there are things about your son you praise God for. Grieve what is lost and then Praise Him for what IS.

Tiffany
07-14-2012, 08:50 PM
(((((((Rebe))))))))
This is my life also, with two.
I am so glad you shared honestly how you felt. I have felt the same. Missing my daughter's dance performance because I had to carry out a screaming, kicking child while everyone else stared at me, and feeling judged too. So many different scenarios. We have a wedding coming up, I know we cannot go. What do we do? Does my husband go alone (it's his friend), to a WEDDING?? And then, how to really explain?
It's very hard. It's very lonely. It affects everything. I think we have to feel what we feel, and be able to express it where it can be heard and understood.
For me I feel like I am only just learning to accept what is. What I can't change. If only a little bit.
Amy Joy's words were so right and true.
Sending love and prayers to you.

Julie Y
07-14-2012, 09:34 PM
Rebe, I have never faced the challenges of which you speak, so please forgive me if my suggestion is inappropriate but might you be able to hire a nanny/companion to bring along on family events? Perhaps a college student majoring in special ed? Someone who would be able to handle your ds when he needs to be taken out? I know a lot of Sunday School classes and school classes have one-on-one advocates (can't remember the term for it) who accompany a child throughout the day, why not one for private family use?

:group: to you!

Hollie in SC
07-15-2012, 08:48 AM
:group: It happens here, too. I understand your heart.

Much love, Rebe.:group:

Rebe
07-15-2012, 05:09 PM
Thank you all. Ds had a good day today. He even earned two stickers (for computer time) for being good at church -- and I had decided ahead of time to take him out for the sermon and do my own little Bible lesson with him, so that worked out well. As long as I can keep that good attitude about needing to do that, things will be okay.

Amy Joy, thank you for the reminder. :hcry: I need to hear that.

Tiffany, thank you for understanding! I know exactly what you went through at that dance recital and it's so good to hear someone else admit that "it affects everything." It does. It's really hard. And my dh did go to the reception last night without me (he took my oldest, who wanted to go, and the others were too tired and stayed home with me). He said it was weird, but okay. But it was all his family which is different than a friend's wedding. I hope you all find a good solution to that. I think in that case I might get a babysitter -- is that a possibility at all?

Julie, I did hire a high school girl to come to my mom's funeral with us to take care of him there. Other than emergencies like that, we rarely would have the money to hire someone. It's really expensive. And I would have felt very strange with a girl there to take care of him at this wedding. It would have looked odd, you know? (I know, but what's more odd than having to literally wrestle a boy who seems old enough to behave out the door 30 seconds before the wedding begins, and then me be in tears later in the day where everyone can see ... but oh, well...)

Another place we have never been able to take him is Six Flags, which we go to once a year. The one time I hired a babysitter for that it cost $70. :eek: So that was the end of that -- and we asked my MIL to babysit here at home. She did that for a couple of years, but she's 75 now and I'm not going to ask her to stay with him for 8-10 hours again. So this year he has to go with us. I'm doing everything I can to prep ahead of time (making sure it's not too hot, making sure there's enough food, being okay with spending most of my day in the kiddie area, etc.). So anyway, we do occasionally go places without him, but the older he gets, the harder that is to do, and truthfully, we just don't want to. He's a part of the family and it's just too weird leave him home when we do something. It doesn't feel right to do that anymore.

I'm glad to know that I'm not the only one with this problem, though. This is really difficult for me and it's so good to have a place to come where people won't judge or misunderstand, and where some even have the same problems I do.

Thank you all for your hugs and encouragement. :group:

Nanci in WA
07-15-2012, 09:58 PM
I just wanted to say I totally understand. My heart goes out to you. I know what it's like to miss out and to feel judged. It's not that you are being selfish, you are being human. :group:

It does get easier as they get older. My son is now 13 and was just like that. Although it is still hard to take him some places, he doesn't throw himself on the floor screaming like he used to (at least not in public anymore; sigh)

Do you use any supplements for calming him? We have found Valerian and/or Theanine (an amino acid found in green tea) to work wonders, as well as
5-HTP/St. John's Wort to take the edge off the anxiety.

And like someone else mentioned, realizing that you were chosen by God for your situation and that He sovereignly allows it really helps alot, too. He hasn't forgotten you; He feels your pain and sees your struggles. I have found I've grown in ways I never could have imagined, and so have my older daughters by not fighting the situation, but by learning to be honest with our feelings (yes, sometimes we hate it, too) and turning it over to the Lord.

KatieCO
07-16-2012, 08:07 AM
Hugs, nods and understanding here.

TonyaP
07-16-2012, 10:02 AM
It is hard. I have to always weigh the benefit of the activity vs the risk of it going bad. But it is what it is and I have to remember that there is a reason and a greater plan. :group:

Esther-Alabama
07-16-2012, 01:31 PM
I'm just gonna send you a :group: and say that some Sundays I come home from church wondering WHY in the world I keep taking my kids to church every week. Seriously, I know that is not very holy, but honestly how I feel. I feel that way about almost everything I do with my kids.

VBS..... Kind of a disaster this year.

Church camp.....a stressful and hard time for Paul and me this year.

Our communion has changed from little cups for each person to one large cup and everyone dunks their bread....he is still mad about it a year later.

Sigh....it IS so hard sometimes. Just when I think we have it handled, he goes to the wrong Sunday School room and spends the whole time crying in the corner. That was the one Sunday I was teaching his sisters class and allowed him to go to his room without me going with him. He goes to this class every week. So many issues....why didn't someone come get me? Why didn't he just go to his classroom...next door? Why didn't he tell his teacher?

And this is just his issues with church. I'll get depressed if I start talking about friends, homeschool group, scouts, etc....

Rebe
07-16-2012, 02:53 PM
Oh friends. I understand so well. I don't know about you, but the lack of IRL support (except from my dh) is so difficult. It all looks "normal" on the outside. There is no wheelchair, no visible disability, no official diagnosis, even (not that I'm diminishing those things or asking for any of them instead -- I understand those things are equally hard and often worse). But to never know, when you walk out the door, what's going to happen at X event, how the child is going to react or behave ... it's so difficult.

Usually I can take ds shopping without incident (this is relatively new that I can do this, but if we're alone, he's usually pretty good). Today I took him and his 10yo brother to Target. I can't remember the last time I had a worse experience out shopping. It was AWFUL (yes, I'm yelling "AWFUL!"). I am just now recovering mentally three hours later -- it takes so much out of me and puts me in such a foul and unhappy mood.

My dh and I talked today that ds is both predictable (we know what can set him off) and unpredictable (OTOH, you just never know what he may do). We try to prepare when we leave the house for any possible outcome, but sometimes we forget or we don't anticipate some turn of events. My dh suggested packing a bag to take nearly everywhere -- kind of like carrying a diaper bag again, but it would have sugar-free or low-sugar snacks (sugar sets him off for sure), a water bottle, pencils and paper or something to "do," a stuffed "friend," etc. Does anyone have a bag like this for a child like this? What else have you found helpful to take with you?

I also need to remember to prepare him verbally for every. single. thing. we. do. I forget sometimes. On many days, I need to do that every single time we change gears and do something new or go somewhere.

Esther-Alabama
07-16-2012, 03:47 PM
YES, I am always packing Clif bars for Paul, peanut butter crackers, a small pad and pencil, an audio book loaded onto my iPhone, earbuds, and an actual paper book that he likes and has previously read.

And, yes, he needs warnings prior to the event. Today, I was putting on my shoes and Lizzy asked me where we were going. I told her and she ran out yelling for Paul. "Hey, Paul, in five minutes we are going......" Even she knows.

AmyinWI
07-16-2012, 09:44 PM
I'm sorry, I don't recall if you've mentioned before.. is your son on the autism spectrum, ADHD, or is it just sensory issues that set him off?
I think packing a bag, and being "prepared" as much as possible is a great idea.

I was going to suggest a helper to come along to events also,but I can certainly understand the money issue there.
Is there any kind of funding available for respite care where you live? My friend gets that for her 2 disabled adult children that can't go everywhere the rest of the family go. I don't think it's "weird" to have a teen helper come with you to an event. If you son has a special need,then that's what you are using to help him. If people are rude or don't understand, that's their problem!

I do totally understand what you are going through. My son (5yo ,autism) sat through church for the FIRST TIME EVER a few weeks ago. Normally I have to take him out ,he gets so loud and rambunctious. I'm sure there will be future episodes as well, but that one good day gave me hope.
My friend suggested headphones for my son to drown out the noise in situations that over stimulate him. Also playing relaxing music into the headphones. I haven't tried it yet, but maybe it's something that might help your son?
:group:

Rebe
07-17-2012, 06:02 PM
Amy, that's so great that your ds sat through church! I know how exciting that is -- I never know from week to week what will happen at church. Often I just put myself in the mindset that I'm taking him out for the sermon, and we do a Bible lesson together and have a good time. But I love it when he can sit through and I can actually hear the sermon.

He doesn't have an official diagnosis, and I'm not sure I'll be getting one for him. I suspect that he (and my oldest, when he was young) would fall "borderline Asperger's." (My ped said, yes, there is such a thing.) My oldest had more sensory issues, but this little guy is more ADHD. So they're similar, but different. But no official diagnosis.

Alice R
07-18-2012, 07:28 AM
Totally TOTALLY not selfish.

:group:

laurie in ok
07-18-2012, 07:04 PM
:group::group::group:

JennyO
07-21-2012, 04:23 PM
Hugs! I'm really sorry. I do understand. We have just started to be able to go more places as a family and it has been wonderful in many ways. But, we have a lot of kids too...so that has kicked up the stress a few notches at times. We can never, ever, ever take our eyes off of our oldest and now our youngest. My 2.5 year old is a ball of fire too. She's just typical preschooler :spin: But, we love our kids and know this is a season. The season with our oldest daughter is what we call our "forever" season. Lord-willing, she will be with us long term. She is almost 12. She/we have been repeatedly left out, looked over, and we've just had to make the decision on what activities to make it to or not. It still can be tough. But, I guess I've sort of come to an understanding to with the Lord that this is where He has called me. It's a very unique and special calling and I do want to make the best of it. That being said...when those tough times of reality hit...it's more than okay to cry, grieve and pray. We NEED to. Call out to your Father!