Friday, January 27, 2012

Shared custody with Special Needs Kids

Divorce with kids is hard. With kids with Special Needs?  Super fun.

For their weekends with dad, I first have to pack two full bags of supplements and special foods for their diets.

Sorry Rylie looks like a mutant in this one.  It was the only picture I took.  I think I need a new camera. Or more time to ask little kids to sit still so I can get a good picture.  : ) 

The purpose of the picture is to show the Kirkman bag full of supplements, and the pink bag full of special food for the kids (minus the spaghetti sauce and tapioca bread which Rylie has helpfully unpacked while I'm trying to pack).  We also have a suitcase which is half full of diapers and pull-ups (that you shouldn't need if you have a typical 5 1/2 year old), and a toy bin for important toys that Hayden can't live without for two days.  (Current favorites are Super Smash Brothers for Wii, Sonic, Mario, and his Angry Birds collection.)  Of course I can't pack any of this ahead of time, as it's all in use up to the morning of the day they leave.

Each of them has their own supplement chart that I have to send. For Hayden's I also track behavior and changes to his environment and routines. This is helps me figure out why huge behavior spikes occur. (Although those are pretty rare any more.)

Each box above is supposed to have a check mark by the end of the day.  It never does, but it's nice to have goals.  : )  The gray-ed out ones are things I still need to add.

Rylie's chart seems to keep getting bigger. This is three days' worth, though, not just one.

I then have to type up or jot down notes to the ex on what's new, even though it's only been 2 weeks since the last time I wrote notes.  This week's notes:

Both kids have ear infections and need Amoxicillin morning and night. Hayden gets 10 ml, Rylie gets 7 ml.  Probiotics are very important right now since they are on antibiotic, but wait an hour after Amoxicillin before giving probio, so it doesn't kill it.  Rylie should get 1/2 tsp of Kirkman twice a day, H should get 1/8 tsp of Klaire twice a day.  Please send back Rylie's probio on Sunday.  

I colored in orange the main supplements the kids should get. Hayden should get one small white scoop of the enhansa twice a day.  I tried to raise his dose and he reacted to it, so I went back to the original dose and am going to keep it consistent. He has an appointment with the DAN Dr. here on February 2nd at 2:15. I know you have school so I will let you know what we discuss. But if you want to come and are able you are welcome.  I will let you know when the next appointment is, it will probably be in about 6 months.

Hayden can now swallow pills. He can swallow the enzymes, Carnosine, folinic acid, amino acid, and s. boulardi.  He takes them one at a time. He will probably balk about it because it's not his favorite, so you may need a reward like chips or a game for afterward.  He can eat his spaghetti with a fork.

Rylie had a recheck today at Ortho Indy and the Dr. was pleased with her progress. He said she could just wear the brace for 2 hours a night, because I was worried that it was too red/cutting off circulation, or forcing her to tuck her foot under her at a weird angle.  I didn't send it this weekend because I want to show you how to put it on.  The nutritionist thinks her latest issues with eczema and constipation could be a reaction to corn, so we are supposed to stop feeding her corn for 2 weeks and see what happens. When I can afford it I will give her the $220 blood test so we can know for sure what she's allergic to.  So for now please try to limit wheat, milk, and corn for her. Although I'd rather she ate wheat and corn than nothing if that's all you have, since she lost a pound over the last 2 weeks.  The pediatrician thought it was probably from her cold/ear infection and therefore not being as hungry. The nutritionist thinks it's yeast overgrowth and an unhealthy gut that needs to get under control (through enzymes, probiotics, and limit foods she's sensitive to.)

Rylie drinks the rice milk I sent. She likes it warm, so if she won't drink it you might run hot water over the cup to warm it. She also likes juice. She likes french fries baked in the oven. The nutritionist said this is a good food to get her more calories. She likes hamburger, and sometimes she'll eat hot dogs broken up.

I am switching day cares next week.  The Rainbow daycare has had a new director for a few months. I don't trust her and don't like the way she treats the staff and kids. She is 30 minutes late every day picking Hayden up from Cornerstone. All but two of the staff have quit.  I have been looking for a new daycare for weeks and have been unable to find one that will transport to Cornerstone, but Christine finally found one. They observed Alex and Hayden today to make sure their special needs could be met, and I will meet with them Monday to discuss any special information about his care. Hopefully he and Rylie will start Wednesday if the new daycare (La Petite Academy) is able to get a second bus by then.  

Hayden is at a new building at Cornerstone. It is a large building behind the original. If you ever need to pick up or drop off, you drive around behind to the taller building. He will start getting OT services at Cornerstone next week.


And, finally, when they come home from dad's, I of course have the fun every other divorced parent has, of doing laundry and unpacking everything.  The supplements and food are the most fun part of this, kind of like unpacking after going on a picnic.  It was fun to go on the picnic, but not so fun to come back.

If there's one trait required as an Autism parent, it's ORGANIZATION.  In all things.  Maybe that's why God gives Autistic kids to Aspie parents like me.  : )

I know, I can hear you over there, you're saying, "Geez, this chick isn't organized, look at these pictures of her apartment-- you can't see the floor!"  

I will have you know that it was clean and organized once. On December 24th, 2011. You could even see the floor.  Look, I have proof:  

 Although, if you've seen the Christmas post, then you know what this same room looked like later that evening. Ah well.

And now, since my dear children shared their cold with me, and just got picked up by my brother-in-law to go to their dad's... I'm going to bed, and I'm going to sleep in past 5am tomorrow! : )  Take care, friends!

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