freeindeed Posted March 21, 2013 Share Posted March 21, 2013 We were headed out to dd5's special needs Easter egg hunt today, but on the way she had a major meltdown. She does not travel well.at.all. The hunt was a 45 min. drive from our home, so we just turned around after 10 min. and came back home. The thing is *she* doesn't even know what she missed b/c she is not at the cognitive level to even understand Easter or hunting eggs. It just makes me really sad sometimes. It is painful to me that we can't do these things that so many other families take for granted. It is hard on my older children and my hubby, too. Prayers appreciated. Quote Link to comment Share on other sites More sharing options...
MomatHWTK Posted March 21, 2013 Share Posted March 21, 2013 It is a huge adjustment and there will be a mouning period for what "isn't." Over time, you will learn to make your own moments, your DD may get better at handling things, and you will become more discerning as to what moments are the most important. Thus far we are mostly an all for one and one for all family. But it is OK to say, "This time mommy and the big kids are going." It is sad that the whole family can't go and share, and there will be times when you can- but in the beginning you have to be choosey. :grouphug: Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted March 21, 2013 Share Posted March 21, 2013 :grouphug: :grouphug: :grouphug: I'll pray especially for you during our prayers this evening. I can totally relate. I feel like much of what we've been able to do as a family has really been impacted because of sensory issues. What is especially sad is that we have a much older relative living alone far away who misses us and can no longer travel because of health problems. We have put off the trip for years because of our worries about what it would be like to deal with the sensory stuff and possible meltdowns that tend to come when they are overtired and stressed like they would be on this trip--not to mention dealing with it all in a place where I won't be able to use my usual strategies, don't know my way around or know the language. I'm afraid that it will be too late if we wait much longer. I'm sorry for not being more positive. I should find a way to encourage you!!!! But, really, I realize that a big part of it is my problem. I don't think another mom would handle it in the same way or necessarily become as worn-down by it. Try to stay positive, which is very hard when you're not getting sleep, I realize. Keep trying. You never know when you'll get a breakthrough. Quote Link to comment Share on other sites More sharing options...
dbmamaz Posted March 22, 2013 Share Posted March 22, 2013 is it possible to take her to whatever egg hunt you would take the other kids to, and just walk with her? It wont be the same experience for her that it is for the other kids, but still being around the kids and getting a couple of eggs would probably have been enough for her - and most places would be understanding enough for you to be her 'aide' . . or an older sibling . . . Quote Link to comment Share on other sites More sharing options...
freeindeed Posted March 23, 2013 Author Share Posted March 23, 2013 We ended up just letting her play with eggs in our own front yard. She actually enjoyed it a lot. We are still adjusting to what I call the new normal. Today is better. Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted March 23, 2013 Share Posted March 23, 2013 ****hugs**** I get it, and I am sorry. At least she's not upset that she couldn't hold it together in the car. In somr ways a lack of cognitive awareness can be a blessing. Quote Link to comment Share on other sites More sharing options...
Dandelion Posted March 23, 2013 Share Posted March 23, 2013 I get it. :grouphug: It's tough, and it gets to me too. We end up doing a lot of things separately. One parent will stay home with DS while the other goes somewhere with DD. DS has Asperger's and just doesn't do well with a lot of activities that we know DD would enjoy. I think it's actually harder on us as parents because we know what the child is missing out on, while our kids may be oblivious to it. :grouphug: Quote Link to comment Share on other sites More sharing options...
dsmith Posted March 26, 2013 Share Posted March 26, 2013 :grouphug: :grouphug: Egg hunts and pinatas. Two of the worst things ever for us! Quote Link to comment Share on other sites More sharing options...
freeindeed Posted March 26, 2013 Author Share Posted March 26, 2013 Thanks to everyone. We've had our daughter for three years, but only within the past year & a half did her significant special needs begin to manifest. I still have to figure out how to navigate this journey. Some days are better than others, but I am learning to let go of the dreams and plans I had & exchange them for new dreams & plans. It isn't easy, though. Quote Link to comment Share on other sites More sharing options...
Faithr Posted March 26, 2013 Share Posted March 26, 2013 I am feeling this so acutely right now. I resent that we can't just do normal things without a huge fuss. It is like constantly having to navigate a minefield. I wanted to do this fun trip and drive back from my daughter's graduation in Texas in May. I had all these plans for visiting Memphis and Nashville, The Great Smoky Mountains. 14 yo is already flipping out about it, everyone else in the family is looking at me like I am crazy to want to do something like this because of the way 14 yo totally flipped out last time we traveled. The only traveling we can do is go to the beach and then he's only happy if we visit the same beaches we've visited in the past. God forbid we try to do anything different. His anxiety levels go way, way up. It is so hard to homeschool when you have a child who simply is so narrow and so anxious about anything new. This is why we are sending him to a special school, starting in April. I can't work around his narrowness and it is directly affecting me and his younger sister the most. it can be very tough and I've been feeling very sorry for myself lately! :( Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted March 26, 2013 Share Posted March 26, 2013 I am feeling this so acutely right now. I resent that we can't just do normal things without a huge fuss. It is like constantly having to navigate a minefield. I wanted to do this fun trip and drive back from my daughter's graduation in Texas in May. I had all these plans for visiting Memphis and Nashville, The Great Smoky Mountains. 14 yo is already flipping out about it, everyone else in the family is looking at me like I am crazy to want to do something like this because of the way 14 yo totally flipped out last time we traveled. The only traveling we can do is go to the beach and then he's only happy if we visit the same beaches we've visited in the past. God forbid we try to do anything different. His anxiety levels go way, way up. It is so hard to homeschool when you have a child who simply is so narrow and so anxious about anything new. This is why we are sending him to a special school, starting in April. I can't work around his narrowness and it is directly affecting me and his younger sister the most. it can be very tough and I've been feeling very sorry for myself lately! :( Sending out hugs and prayers for you, too! :grouphug: Quote Link to comment Share on other sites More sharing options...
Faithr Posted March 26, 2013 Share Posted March 26, 2013 Thank you, Tiramisu! Prayers for you too! Quote Link to comment Share on other sites More sharing options...
freeindeed Posted March 26, 2013 Author Share Posted March 26, 2013 I am feeling this so acutely right now. I resent that we can't just do normal things without a huge fuss. It is like constantly having to navigate a minefield. I wanted to do this fun trip and drive back from my daughter's graduation in Texas in May. I had all these plans for visiting Memphis and Nashville, The Great Smoky Mountains. 14 yo is already flipping out about it, everyone else in the family is looking at me like I am crazy to want to do something like this because of the way 14 yo totally flipped out last time we traveled. The only traveling we can do is go to the beach and then he's only happy if we visit the same beaches we've visited in the past. God forbid we try to do anything different. His anxiety levels go way, way up. It is so hard to homeschool when you have a child who simply is so narrow and so anxious about anything new. This is why we are sending him to a special school, starting in April. I can't work around his narrowness and it is directly affecting me and his younger sister the most. it can be very tough and I've been feeling very sorry for myself lately! :( :grouphug: Sometimes it is so hard not to feel sorry for ourselves. Quote Link to comment Share on other sites More sharing options...
Faithr Posted March 26, 2013 Share Posted March 26, 2013 I am very talented at feeling sorry for myself! It is one of my great strengths! :glare: (not sure which is the proper emoticon for irony. LOL) Quote Link to comment Share on other sites More sharing options...
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