wicki859 Posted June 30, 2011 Share Posted June 30, 2011 I need to just reach out and find out if I am alone here. My ds is 8 and has Asperger Syndrome. Sometimes I find it so difficult to just accept that I CAN'T do all of the things "other" moms get to do. I sometimes "forget" just how much he is affected by the AS. Sometimes I get complacent because he's doing so well...for a while...and then whammo we have a period of time when things get rough again. Sometimes during those times I lose sight of the fact that my mission field during this season is my children and meeting their needs. I can't hold a job. I can't go to all of the social functions that other moms bring their kids to. I can't volunteer for all of the things I'd like to at church. My son needs me. Today was just another glaring example. And you know what? Sometimes it's hard to accept. Sometimes I'd like to have that perfect job for a homeschool mom. Sometimes I'd like to go to the beach with other homeschool families and just relax while my son plays with the other kids. Sometimes I'd like to serve in my church. And I feel guilty that I can't do those things. So, I am trying to learn to trust God through this. Accept our circumstances. Understand my son unconditionally. Forget about what others think. Trust God's plan and timing in our lives. I'm also trying to sit back and enjoy the ride. It may not be what I thought it would be, but I really am blessed. Thanks for listening. :) Quote Link to comment Share on other sites More sharing options...
rafiki Posted July 1, 2011 Share Posted July 1, 2011 . Quote Link to comment Share on other sites More sharing options...
MamaSheep Posted July 1, 2011 Share Posted July 1, 2011 I need to just reach out and find out if I am alone here. My ds is 8 and has Asperger Syndrome. Sometimes I find it so difficult to just accept that I CAN'T do all of the things "other" moms get to do. I sometimes "forget" just how much he is affected by the AS. Sometimes I get complacent because he's doing so well...for a while...and then whammo we have a period of time when things get rough again. Sometimes during those times I lose sight of the fact that my mission field during this season is my children and meeting their needs. I can't hold a job. I can't go to all of the social functions that other moms bring their kids to. I can't volunteer for all of the things I'd like to at church. My son needs me. Today was just another glaring example. And you know what? Sometimes it's hard to accept. Sometimes I'd like to have that perfect job for a homeschool mom. Sometimes I'd like to go to the beach with other homeschool families and just relax while my son plays with the other kids. Sometimes I'd like to serve in my church. And I feel guilty that I can't do those things. So, I am trying to learn to trust God through this. Accept our circumstances. Understand my son unconditionally. Forget about what others think. Trust God's plan and timing in our lives. I'm also trying to sit back and enjoy the ride. It may not be what I thought it would be, but I really am blessed. Thanks for listening. :) :grouphug: No, you're definitely not alone, I'm right there with you. I do find that sometimes it helps to focus on things we CAN do, rather than wallow in the things we can't do. But I do periodically go through stages where I feel like autism is eating my life and the walls are closing in. It has gotten better as ds has gotten older, and I have more opportunities to participate in life outside autism than I did when he was younger, so that's a blessing. But sometimes....well....yeah, I know where you're coming from. Quote Link to comment Share on other sites More sharing options...
RamonaQ Posted July 1, 2011 Share Posted July 1, 2011 :grouphug: Just, :grouphug:. I continue to find acceptance the hardest part of motherhood. Quote Link to comment Share on other sites More sharing options...
myboyluvsdinos Posted July 1, 2011 Share Posted July 1, 2011 Thanks for posting this. I just got back from a hike, where I pondered very similar thoughts as you. It's nice to know it's not just me -- that there are other moms out there trying to accept and trust in the future. My solution for TODAY, is to try and get to bed a bit early, with a good book. Tomorrow is another day. :) Carolyn Quote Link to comment Share on other sites More sharing options...
mom4peace Posted July 1, 2011 Share Posted July 1, 2011 I've had those thoughts plenty of times, too. We really have to plan carefully so as not to overwhelm my son with AS, almost 10. Honestly, some good therapy and small doses of medication for his severe anxiety help a bit. It's not everyone's choice, but for him (and my other son and I), it's helped us broaden our horizons. Still, it's far from smooth sailing. Accepting the limits is hard. Accepting the meltdowns is hard, too. My friends with older Aspies say it gets easier. I know I can look a year back and realize he's come a long way -- we're all out and about more. But in the middle of it, it's hard. One day at a time. Quote Link to comment Share on other sites More sharing options...
Food4Thought Posted July 1, 2011 Share Posted July 1, 2011 More :grouphug::grouphug: Today we had to cancel all of our plans because DS was "off." Sometimes I'm disappointed because I really wanted to do something. In this case, I was really glad because I just wanted a day to stay home and do nothing. I usually try to remember all the positive aspects of raising a brilliantly quirky mind, even on these off days when I feel like pulling my hair out. Quote Link to comment Share on other sites More sharing options...
Dobela Posted July 1, 2011 Share Posted July 1, 2011 Every parent of a child with a disability has the same feelings at some point or another. Hve you ever read Welcome to Holland? Quote Link to comment Share on other sites More sharing options...
wicki859 Posted July 1, 2011 Author Share Posted July 1, 2011 Thanks for all or the encouraging replies. I have read Welcome to Holland, but maybe it's time I read it again! :) Good to know I'm not alone. Quote Link to comment Share on other sites More sharing options...
dkpalaska Posted July 1, 2011 Share Posted July 1, 2011 :grouphug: Yes, I can so relate. My Asperger's son (almost 10) has made me a much better person than I would be otherwise, but it comes through a lot of tears, frustration and heartache. Not being able to do what other moms can do is a big part of it. None of our close friends have SN kids and so while they sympathize and try to help (some a great deal), noone really "gets it". I don't blame them: I didn't "get it" either, until I had to start looking at the world through my son's eyes. We also have the tension between trying to give my two younger NT kids at least some of the same fun experiences that their friends get, and not overwhelming my SN son or having him feel left out. And the social struggle of Asperger's is particularly hard - sometimes I think kids would play better with my son and be more sympathetic if he had a more "obvious" disability. But since he looks "normal", people fall into expecting him to act "normal" even when they know his diagnosis. So anyway, just :grouphug:. Your son has just as vital a purpose in this world as every other kid! :) Quote Link to comment Share on other sites More sharing options...
Dandelion Posted July 1, 2011 Share Posted July 1, 2011 I need to just reach out and find out if I am alone here. My ds is 8 and has Asperger Syndrome. Sometimes I find it so difficult to just accept that I CAN'T do all of the things "other" moms get to do. I sometimes "forget" just how much he is affected by the AS. Sometimes I get complacent because he's doing so well...for a while...and then whammo we have a period of time when things get rough again. :grouphug: I could have written this verbatim. My 8yo DS has Asperger Syndrome and I know exactly how you feel. You're definitely not alone. Just wish all of the people on these boards who actually "get it" lived closer - I'm having a hard time connecting with parents of other kids like mine IRL. It's nice to be able to come here and find support. OP - hope today is a better day! :) Quote Link to comment Share on other sites More sharing options...
wicki859 Posted July 1, 2011 Author Share Posted July 1, 2011 (edited) "We also have the tension between trying to give my two younger NT kids at least some of the same fun experiences that their friends get, and not overwhelming my SN son or having him feel left out. And the social struggle of Asperger's is particularly hard - sometimes I think kids would play better with my son and be more sympathetic if he had a more "obvious" disability. But since he looks "normal", people fall into expecting him to act "normal" even when they know his diagnosis. " YES! We have a 15 year old daughter, and balancing everything is tricky some times. Also, That very thought about "if his disability were obvious" crosses my mind so often! Yesterday was so tough. We were at the beach and there were other kids there that he sort of knows through the homeschooling circle, and I just wished they could have more compassion. He tries so hard, but then reacts just as hard when things go wrong. And trying to facilitate play and trying to guide the interaction is SO tiring! It just ended badly. *sigh* Edited July 1, 2011 by wicki859 not sure how to correctly quote preious posts. Quote Link to comment Share on other sites More sharing options...
chiguirre Posted July 3, 2011 Share Posted July 3, 2011 It's gotten better over the years, but a large part of that is just expecting ds to do a lot of things outside the house (and accepting the meltdowns when we get home). His tolerance level has vastly improved and he can usually find someone to hang out with at park day or a swim meet. He's still a bit odd, but he's found a niche. Quote Link to comment Share on other sites More sharing options...
dkpalaska Posted July 3, 2011 Share Posted July 3, 2011 wicki859: I know. I'm so sorry you had that rough day at the beach. Please know you're not alone. :grouphug: There will be good times, too, and they are all the sweeter when they come. Keep those close to your heart. I was fighting back tears last week when my ds played in an actual mini-pickup baseball game with his sister and three of his godbrothers, who were all encouraging and cheerful. Something taken for granted by other parents, a moment of pristine joy for me. Quote Link to comment Share on other sites More sharing options...
heart'sjoy Posted July 5, 2011 Share Posted July 5, 2011 I had to make a tough decision to not continue helping with a children's program in a tiny church in a rural community. It was a high stress situation for ds9. I needed to clear off our schedule for RDI at home. I also had to take all the kids out of our only other extra curricular, tumbling. It was one of the hardest decisions I've had to make. Playtime with other kids has worked best in our home with kids younger than ds9. I'm dying to visit my family,1500+ miles, but dreading the stress and meltdowns. My sister and her family were here for a week with a 7 and a 3 year old. It was precious visiting, but I had swivel neck from closely monitoring ds9 and was exhausted by the end even though we had quiet time breaks for a few hours every day. It's a roller coaster ride for sure. One great surprise was watching ds9 negotiate a "calf scramble" in a rodeo arena with 80+ kids all chasing 12 calves trying to grab ribbons attached to the calves' tails. He managed fine. Quote Link to comment Share on other sites More sharing options...
SweetMissMagnolia Posted July 6, 2011 Share Posted July 6, 2011 (edited) I can sooooo relate-my son has asperger's,adhd,axiety....sometimes I feel soooo left out of some of the things that our group does-especially the field trips that are farther away from home-we really want to go but can't-and vacation LOL my son has never been on a vacation-and believe me mom is in need of a beach vacation! LOL but we just can't figure out how to make it happen-not just because of my son but because we (hubby and I) are caretakers of his dad (disabled-slight alzheimer's)...... :grouphug: Edited July 8, 2011 by SweetMissMagnolia Quote Link to comment Share on other sites More sharing options...
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