Thursday, February 12, 2015

The cost of Autism...

Got two autism bills this week. $907.49 and $1542.50.

Anyone sitting on a large sum of money they don't know what to do with?

No?  Hmmm.  Bummer. Maybe Joseph​ can sell a kidney or something.  


Wednesday, February 11, 2015

Being a special needs parent is a full time job

On any given day, any number of these may (or must) take place.

I realize, many of these are things any parent may have to do. The problem for a special needs parent is that there are so many of these, and many are urgent and must be completed within a short time frame.

-- Call billing for doctor's office because all the doctor bills weren't lumped into a payment plan correctly and four bills went to Collections (they were able to fix it, fortunately).

--  Call and order B12 shots through mail order, since you can't get them at the local pharmacy

-- Shop Kroger for GF foods that contain bean flour and not potato flour

-- Shop Meijer for GF foods they carry that Kroger doesn't carry

-- Shop Target for GF foods that no one else carries. Or what's on sale.

-- Shop Amazon for GF items in bulk

-- Research supplements like taurine, phosphatidylcholine, biocidin.

-- Research programs and treatments, such as addressing genetic mutations, methylation, and liver detox and support.          

-- Reorder vitamins online from two or three different sellers

-- Email advocate regarding IEP changes.

-- Email advocate and/ or school five more times. 

-- Meet for IEP.

-- Meet for IEP again a month later.

-- And again two weeks later.

-- go to FedEx to fax documents, make copies

-- go to the post office to send documents through certified mail

-- Meet with MAPS doctor

-- Type up notes from MAPS doctor appointment

-- View kids' blood test results online

-- Print and mail Medical form

-- email new form to school

-- Take child #1 to a specialist for xyz

-- Take child #2 to a specialist for lmnop

-- redo vitamin chart weekly with new additions from the doctor, and remove anything that caused a strange reaction (constant spinning, for example)

-- Meet with school cafeteria manager at both of your children's schools, to discuss your child's diet and discuss what foods s/he may be able to eat at school. (The answer is very little, as most is processed and contains sugar and/or wheat, dairy and soy.)

-- Therefore pack a lunch for child #2 each day.  (Again, I realize this is not different from any other parent, it just adds to the to-do list each day.)

-- Print social stories about anger, put into binder

-- read social stories and discuss

-- Create morning routine agenda picture schedule

-- research essential oils for autism

--  Put in Essential Oils monthly order.

-- apply essential oils for anxiety, rashes, etc.

-- attend workshop about finances

-- create behavior rewards chart

-- answer call from daycare about aggression

-- speak with daycare/school after work about his behavior today and give suggestions/ apologize/ thank for their support

-- call insurance company (again) to dispute their payment

-- answer phone call from DOE. Document phone call.

-- try and file some of the paperwork from this week so it's in some kind of order

-- give the kids their morning, afternoon, and evening vitamins, including powders, liquids, cold items, and pills

-- add epsom salts to bath and rinse after

-- give Rylie her special cream

-- give Hayden his special cream

-- do Rylie's foot exercises

-- sit with Hayden for an hour while he is in full meltdown mode (aggression, hitting his own head, throwing things, calling names, etc.)

-- give special time to Rylie after meltdown so she gets attention too

-- redo our behavior chart for home with new input from school and ABA center

-- cook three dinners with everyone's dietary needs taken into account

-- search Pinterest for new recipes for special diets

-- make new recipes and try to get someone to eat them

-- feel guilty about not filling out special needs grants applications. Start one and get to page 3 of 20. Put it on a table somewhere and lose it.

-- stay home often with a sick child, because their immune system is compromised and they catch everything that comes around, and/or they ate something that wasn't allowed on their diet and are now stuck in the bathroom for hours

-- find a babysitter who will watch a special needs child.

-- ask questions in online forums and respond to suggestions

-- answer online questions from other parents in need of help and ideas

-- make special treats for weekend birthday party, school, or daycare

-- do sensory and relaxation exercises with Hayden

-- go to local pharmacy for usual scripts

-- go to another pharmacy for other scripts that this pharmacy doesn't carry

-- go to the eye doctor to get Hayden's glasses bent back into shape for the 4th time because he threw them

-- pick up children on time for therapy

and.... blog about it.  

Yeah, so not all of these get done each day. It's not possible. I put out the fires that are closest and leave the rest to burn a little longer.

Oh, and don't forget... slow down! Enjoy life! Have fun!  

Sometimes you have to decide to drop most of it, and just go out and play.

A day in the life!  I needed to blog. This was the topic most on my mind right now-- the feeling that it never really all gets done. 

This is not to complain but to just put it out there. Having special needs kids is a lot of work. Writing it all down made me feel a bit accomplished! And no, I'm not making any of this up. These are all real tasks I do on a regular basis. 

I'm also not asking for help. I'm doing ok. I feel good about the progress I'm making on this never-ending to-do list, and I'm proud of how much progress the kids have made recently, as well as our family as a whole. I have Joseph to thank for much of that. :)

If you would like to help a cause dear to my heart, though, and you can donate, I would love for you to donate to the Autism Research Institute in Hayden and Rylie's honor. My kids would not be where they are today without the work of the doctors in that group.  

Hugs to my special needs families-- it's almost Friday! You can do it! 

Christmas Photo Shoot 2014

Wednesday, February 4, 2015

Monday, February 2, 2015

Rylie's Imaginary Friends

Rylie has a lot of imaginary friends. They are coming to her party today so she was listing them. 

"And Wassa is coming, and Grisa, he's in 4th grade." 
Joe to me: "did you know Sita is an adult?" 
Me: really? 
Hayden: I thought she was a kid. 
Rylie: no, she's a grown up...
Me: huh. 

Rylie: And Pisspee. He's my boyfriend.
Joe: Pisspee is your boyfriend?
Me: (cracking up)
Rylie: it's not funny mom.
Me: I think it's kinda funny. 

Rylie... (Sigh)... And Sucka, Wooshie, Shirt...Ootah...
Joe: Shirt?
Rylie: yeah.
Joe: does Shirt like Pisspee?
Rylie: yeah
Joe: well if Shirt and Pisspee can't get along I'll be there to take care of it.
Rylie: they're already here.
H: Ugh.

Sunday, February 1, 2015

‪#‎FUA‬. I hate you Autism.

‪#‎FUA‬. I hate you Autism. I am glad for the growth you've brought me, and the chance to help others. But today in my family, I would just like you to go away.
This was one of the worst weeks I've ever had in the Land of Autism. I wish I could tell you about it. I miss sharing our adventures. But I can't yet.
That's probably good because there would be lots of curse words used, and I like to pretend online that I have tact.
Plus in a few months maybe this story will have some gloriously wonderful ending that I can be all sappy about,with a great meaningful quote at the end, you know? And ya'll will read it and say things like, "wow that's great! Go Hayden! Go mom! Yay team! You are so courageous! Way to fight through." Stuff like that. I like that stuff.
Right now the ending of my story is more like... "And so they all sat down in a big hefty pile of poop. It was truly a hot mess. The end." Not as flowery as I'd prefer.
...Not a literal pile of poop...Just to be clear. We're good on that front. Just a more figurative quagmire of crap. Emotional and terrifying. Involved and un-ending. Like that song American Pie. It just keeps going and you're like... Really? Why is this guy still singing? How do I get away from this noise?
But, alas, I cannot get away. This damn song (oops, tact, sorry) darn... song with the title "Autism" just keeps going. When you think it's going to end... New verse. A whole new kind of awful. You've never heard this one before! Wow! And you think to yourself ... How did I even get here? Do I have to stay? Does this song ever get better?
Maybe the trick is to start singing your own song over the top. Loudly. Start drowning the other one out until you can't hear it any more. If you can't hear it, you've won, right? If you make your own song, the other no longer matters.
This week, we have been singing at the top of our lungs. I don't like the verse Autism gave us so I'm making a new one. Hopefully it has a good ending. I'll enjoy telling you about it later.
And I hope later comes sooner than, well, later.
Hugs to my autism and special needs families out there. I get it.