Cindi here. Ehlers-Danlos Syndrome (EDS) has taken me down again and quite forcefully this time. It will not win though as my new doctors are already on the case and are working at stabilizing me from the blow. It might be a week or two before I can get back to posting regularly though as I will be spending most of my energy and time trying to deal with the EDS and being there for my kids. Thank-you for your patience and understanding. I will start posting again as soon as I can. I still have pictures to share from last Saturday when we got to meet a local Autism group and other families. ;)
LOVE this analogy! This mom did a great job explaining Autism to her son’s classmates. :) I am going to have to remember this one next time I find myself needing to help others understand David better. :)
Go here to read, A hair-dryer Kid in a toaster-brained world.
Another great one too (written by her son) here.
I can’t help but wonder if this is what David is thinking when he can’t stop licking things…. “Mine, mine, mine, mine, MINE!” lol If it is, then he must really like me! And his brother, and his trains, and the tv, and the floor, and Wal-mart doors….
Oh dear. lol
In light of what we faced yesterday at the post office, I thought it would be a good time to re-share this post I wrote a couple years ago. Thank-you everyone for all the support you’ve shown my son, and others like him, over the years. Let’s keep it going! There is sadly still so much more to do. Thank-you.
Originally posted on An Autism Diary:
Although the Autism community has come a long way in raising awareness, acceptance, and compassion we still have such a long way to go… Those pictures above are screen shots I took of simple searches. I got the idea to go try it after seeing a friend so upset she could barely communicate after she stumbled on something similar. The results are painful to see, but sadly they are not shocking for me. You see, David and I live this reality daily. We’ve met many wonderful people and have been shown much kindness at times, but for every kind person we encounter and/or get to work with there are several more that are quite the opposite.
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David was struggling a LOT again today, and we didn’t have an Autism shirt on him (that actually makes a difference out here, a good one). The SSI office and Wal-mart (the one that is starting to get to know us) was a safe haven of sorts full of caring and understanding people. The post office though (in a neighboring town), where we had to go first, was sadly not the same…
“I had a dog that acted like that once. Found a good collar and now he’s well behaved. Scared of electricity, but well behaved.”
Yeah… that comment came out of the worker! And the majority of the people there shared their approval of it. He basically just suggested I put a shock collar on my son! NOT COOL! Grrr…..
David is finally starting to settle down for the night though now that we’re home. He’s still a bit loud, but calmer if that makes any sense. lol Still, that comment from earlier is getting to me. People are very outspoken here and the only times I have ever had people show compassion instead has been when they’ve seen an Autism shirt on him before opening their mouths to comment. That, or I corrected their behavior by telling them he’s autistic, but David hears that so I prefer the shirt. Anyone have some good suggestions of where to get more fun and good Autism shirts? I want to keep it light hearted if possible. And David will be more apt to wear them if they’re brightly colored. :)
Today has definitely been one of those moments in time that forces someone to look reality square in the face, as tangled and complicated and amazing and horrible as it can be, and make a choice. A choice to grab on or let go. A choice to run and hide or stay and fight. A choice to step up or to go lie down and pull the covers over one’s head. The irony of it all? There is no wrong answer, not really. At different points, and in different situations, all of those choices have a place and can actually be considered valuable and wise. And even during the times when the best choice for the situation isn’t necessarily what’s chosen, it doesn’t automatically mean a wrong choice was made.
Too tired to fight even though you know you should? Don’t feel guilty about laying those boxing gloves down for a day or two. The fight will still be there waiting for you when you are strong enough to pick them back up.
Too scared to let go? Go ahead and grab on tight. Just make sure you also get a strong hold on someone who loves you and whom you can trust to help you loosen your grip.
Too weary of the heartache or troubles and just want to pull up the covers and go back to bed? That has its place and point in our lives too. Just don’t let yourself make too cozy of a home there. You will need to get back up soon.
A part of me has struggled with what choices I wanted to make as today rolled through with its array of challenges. David has regressed back to a point I haven’t seen him at in years. He struggles with using his words, stims almost constantly, mumbles and hums and squeals and speaks gibberish at least 80% of the time now, he’s running off more and more, his energy is through the roof, his attention span through the floor, and he keeps getting in people’s faces and is a struggle to get pulled back to a decent distance. Add to that the fact that his brother is struggling too in his own ways (whining, fighting, getting physical, shortening attention span) and that my EDS, with the help of serious stress, has taken me down to almost passing out today and getting horribly ill, and you can start to see what’s unfolding here.
A part of me looks at all this and seriously just wants to give up, throw in the towel, say “sayonara!” and go dig out the fluffiest, most cuddle worthy blanket and my favorite book and just check out.
Another part of me though reminds myself that I don’t want that to be my story. I don’t want that to be how this ends. I don’t want to be the one that gave up with the intention of never looking back. Do I need a break? Oh for the love of all that’s good and merciful, YES! But that’s all I need. A break. Some music here, a little reading there, a night of silence maybe while the children are finally sleeping? But then it’s time to get back up, face the sunrise, and remind myself it’s a new day.
I can’t do this alone. I can’t face all these struggles and challenges all by myself. That’s just it though, no matter how I might feel while trudging through the mud at the bottom of this valley, I can still see those mountains. And I can still see the river flowing strong and powerful alongside me. I am NOT ALONE. There are others on this road with me and some who have traveled it before me who are stretching out their hands with encouragement and advice to help see me through.
Most importantly though, I am not alone because I have Him. A loving God who really does care about me and understands my fears and weariness, but can also see that I have a future worth fighting for and so isn’t willing to let me just give up. He has gotten me through so much already, and He has been blessing me and my family tremendously even in the midst of all this chaos. I know I can trust Him. He’s proven that to me far too many times, and on such deeply personal levels, for me to have any doubts left. I don’t always know what lies ahead, or understand His plans and His actions, but I know that He is trustworthy. Sometimes, that’s all that’s needed to tie a knot at the end of the rope and hang on with a prayer.
If you are finding yourself trudging through the mud tonight, please know you are not alone either. You are in good company my friend, and the mud won’t last forever. I promise. And if you need to stop and rest for a bit, please do so. But get it in your head and heart now that you can’t stay there. It’s just a rest so that you can keep going.
You’re not alone.
You can do this.
We can do this.
I can do this.
“la la la lala! la la la lala! la la la la la!”
David is singing that. On repeat. As loud as he can. My attempts to get him to stop just keep making it worse. He’s stuck in a scripting and echolalia mode and it’s giving me a headache something fierce. And he’s been doing it now for over 20 minutes…
That is all.
After another night of not being able to sleep (having way to many of those these days), I decided to unpack all my big paintings and pictures. I don’t have the help to hang them yet, but I missed getting to look at them so I figured it would be nice to at least have them unpacked. Everything arrived safely and it’s nice to see it all again… except something is making me want to cry and having to hold back the tears…
A most precious gift, representing a friendship and support that meant a lot to me in Maize and that I still hold dear in my heart, is missing. :( My son’s painting from Officer Rhodes and the Maize Police officers wasn’t in any of the big painting boxes. :'(
I am hoping to find it, by some miracle, tucked away in a general box instead. It’s been really hard tonight because as much as it’s getting to me that the painting has been lost, David was right there helping me unpack all the paintings so he’s very aware of it’s missing status as well. :(
A lot of good things have been happening here in Idaho for me and my family, a lot of precious blessings too. However, the trials and the painful things that have happened, have been few but very painful. This being but just one (and the lightest blow of them all which is saying something…). I could really use some prayers and any encouragement one might have to offer. Thank-you everyone.
Idaho has been a good change for the most part so far. A bit overwhelming with all the boxes and getting things transferred and set up, but worth it. David has been having the hardest time adjusting, but he’s getting there slowly but surely. He has regressed a lot too from all the change and stress so we’re working with that as well. Any prayers, encouragement, and/or advice welcome on that front. Especially prayers and encouragement. David is also having a hard time understanding that his Kansas friends (family friends, old neighbor, favorite police officer, the firefighters, workers at different stores/restaurants, etc) are not gone now just because he can no longer see them which is adding to his stress. He is such a passionate kid. David truly lives life out to the fullest extent possible in every way he can. Normally I would say how good that is, but in times like this it really does backfire on the poor little guy. :(
We have a new tv cabinet now too. If I ever can get a chance to catch David clothed while watching a movie (yeah, we’re having THAT problem again lol) I will take pictures of what he likes to do with the new cabinet. lol It has a small space right under the tv where he likes to curl his legs up in while watching his shows. I’ve also caught him more than once seeking quiet time in the empty space next to the tv, which is also inside the cabinet. He curls up into a ball, shuts the door (I’m working with him on that…) and just chills for a bit. He has always loved getting himself into tight spaces for calming help, but he has been both seriously seeking AND avoiding sensory input quite a bit more than usual ever since we got here. Half the time it even seems as if he’s conflicted by needing both at once. Poor guy, I definitely understand how that one feels (I have Sensory Processing Disorder myself).
Joshua for the most part is loving it here. He also is loving telling everyone he meets that he’s new to Idaho and that he came from Maize, Kansas. If people stay around long enough, he will tell them that repeatedly. lol Joshua has been having some sensory issues and anxiety issues as well since getting here, but thankfully not as severe as David. Still working with him on it though. A lot of his is he is excited but also sad and a bit uneasy with all that’s happened at once with such a big move. Prayers for him are appreciated as well.
There is so much more to share, but I will save it for another time as I noticed this is already long. My tendency to be long-winded definitely hasn’t changed. lol
Thank-you everyone for your prayers and support. They mean the world to me and the boys. :) Hope this finds you having a great day.
Sleep, it’s so overrated. At least David thinks so. lol I finally gave up and dragged my youngest son to the bed and went to sleep around 9 this morning. David was still up and running on full speed at that point but he was playing upstairs with his legos at least so I took a chance. Got woken up about an hour and a half later because the guys with my furniture delivery showed up way early to drop it off (they were not due until 6:30 pm yet they called me at 10:30 am! ). David was running circles around those poor guys when they showed up and started moving things in.
When all that was said and done, I had David help me put the tv in the new tv cabinet, put on a Thomas the Tank Engine movie (I save them for emergencies like this on purpose ;) ) and went back to bed. Woke up to my alarm at 1pm and THIS KID IS STILL GOING STRONG. What, sleep become irrelevant or something in his world??? Come on David, mommy is not above begging here. You better go down tonight. lol