Wednesday, January 25, 2012

20 things only the parent of a child with Autism thinks... and the reasoning from our house!

Please note this is posted by Eric. Cinnamon just started the post before I hijacked the computer!

If you understand 10 of these you might just be a parent of a child on the Spectrum. If you understand all of them... God help you!

1. Do I have enough space in the living room for the trampoline?
      - Most people don't have a jungle gym in their living room. My house is an all in one gym, therapy center, schoolhouse, and nut house! Don't believe me? Come on over some time. I promise not to drop the kids on you and run... at least not within the first 5 seconds (mostly because it will take me that long to realize you aren't imaginary!)

2. Did I get enough velcro?
      - Picture exchange communication system. PECS. Such a lovely 4 letter word! It is the bane of my existence. I spend more time trying to put velcro dots on pictures than I do on eating, and I eat a lot!

3. Three letters...IEP. If you want a 4 letter word... IFSP!
      - Most parents have never heard of these, most never will. I live in two. One IEP for the oldest, one IFSP for the youngest. One bottle of scotch for me! Wait, that doesn't work does it? On a good note though, we have some of the greatest educators working with us, and they have been wonderful to work with on the IEP and IFSP. We always hear the horror stories of the school district that won't do something, but ours point blank said here's what we have, here's what we don't, and we will help you with all of it!

4. I live in a 2B, 1.5Bth Schoolhouse.
      - No, I'm not talking about living in an old schoolhouse. I mean that my living room looks like someone just walked out of a Scholastic Bookstore sale, and plastered everything on my walls! I have rewards stations, ABC posters, Digraphs, and Schedules all over the place. And once again, I use more Velcro for that. I really should have bought stock in Velcro!

5. I know where the best education stores are
      - Don't believe me? I know where to get 99.9% of the supplies that I find in a classroom. I have found items that even teachers don't know exist. If it is used for education I probably know where to find it, and most likely that place is on one of the shelves in my own home, go back to #4 for more information on that one!

6. How should I organize my sons' PECS?
      - Most people think I'm crazy when I talk about different forms of communication for people who are non-verbal. My co-workers think I have lost it! They have a hard time finding a way to talk to people who have difficulty communicating, and I just break out something random that I find, and we make it a communication device.

7. Where to hang therapy swings?
      - Have you ever looked for a ceiling joist that is load bearing? If you haven't then you obviously don't have a child who likes sensory swings. Oh, you mean swings are just for play? Try being in my house for 24 hours without a sensory swing. You will beg me for one by the end of the day, even if it is for you to hide in!

8. STAMP!
      - No, not the craft stamp. The one and only (fine two and only) School Therapy And Medical Profile binder! A comprehensive file organization system that will tell you everything you need to know about what is going on with my child, and will give you all the tools to steal my identity at the same time! Yup, God bless TriCare and the use of my Social Security number for record keeping on everyone in my family. In reality though the STAMP is a really neat tool. It has sections for everything that we need to keep track of for any appointment with the School, any therapist, or any doctor that either of my children have to see. Is it perfect? No. Does it work for us though? So far so good!

9. Touchy feely feel good clothes.
      - Silk feels good, Burlap feels bad. All other fabrics will require a minimum of 30 mins of touching, licking, and smearing with Peanut Butter to determine if they are acceptable or not. Neoprene has passed the test, as has UnderArmor. ACU material is also ok in short spurts, waffle pattern fabric is a big ole no go!

10. Gluten Free! What's a Gluten?
      - B.R.O.W. Barley, Rye, Oats, and Wheat. The final 4 of bad items in my home. All of them contain a protein called gluten, and when anyone except myself has gluten we all suffer the consequences.

11. I scream you scream we all scream for... dairy free milk?!
      - Have you ever tried to find ice cream that wasn't made from milk? I know where to find at least 4 different varieties in my local grocery store. That is before we even talk about the joys of online shopping. My family has a personal relationship with the UPS man from all the deliveries he makes to our house. Thankfully he understands since his wife does the majority of her shopping online, and he has to deliver to his own home.

12. Yellow #5, Blue #2, Red #40 set hike!
      - You ever notice how many products have artificial colors and flavors? I never did until I started having to keep track of what we gave to the boys. I was going to give my youngest a slushie the other day, and then I remembered that it had red dye in it. Red dye causes him to have vomiting spells that make Mt. St. Helens look like a sprinkler. I am so glad that I thought about it before I gave him that Cherry slushie... and I'm glad my wife didn't catch me almost give it to him!
Update: My wife read about the near miss on the Cherry slushie, and I no longer have the slushie mix. So, if anyone would like to discreetly slip some cherry slushie mix to me I have a dead drop location outside my house that is ready for slushie delivery!

13. All was well, then we got to the milk aisle... the problem with WalMart!
      - Kids always act perfect at the store, until you get to the milk aisle. Why? Because they realize that when you get to the milk aisle you have already filled two carts, and can't just leave said carts for someone else to put all of the stuff away. I have no problem with the screaming from my kids, or the being beaten up by a 3 year old. My problem is with the other people in the store who come up and tell me that I just need to "whoop that kids @$$" and all will be solved. Sometimes I wonder if they didn't get their head whooped a couple of times to cause the amount of brain damage needed to be that dense. If all my kid needed was whooped I probably would have done that a long time ago, but my kid doesn't respond to a spanking. Believe me I have tried a grand total of 3 times, and all 3 times I have gotten laughed at by my kids. That is the humiliating part (the being laughed at by the kids).

14. I want to go for an outing... can I leave the kids there?
      - Everyone wants to get out of the house every so often. I wish that I could, but I have to look at what therapy is scheduled, what kind of a day the boys are having, and what the phase of the moon is. We have ABA therapy Monday through Friday, Speech on Saturday, OT every other Thursday, Developmental Preschool on Monday, Tuesday, Thursday, and Friday, and Medical appointments whenever we can find the time. If the boys are having a good day we can go somewhere, but we have to have both boys in a good mood, and it rarely happens that both are having a good day at the same time. As for the moon, I swear my children are Werewolves. If it is a full moon they are both acting crazy. Apparently this is not unique to our family, it is common for parents of Autistic children to notice this.

15. Open the (#&$^(#@&($(!!(#*$) Door!
      - No, I'm not talking the door to their room. I'm talking the door to the car. Both boys have figured out how to lock their doors just as fast as I can hit the unlock button and get to the door handle. I finally figured out the solution though... duct tape is silver! J/k... I now use the key fob to unlock the door while I'm holding the handle.

16. (To the tune of Hero) There goes my iPod, watch it as it breaks!
      - I think I have spent more money in buying Apple products, and in Otterbox cases, than I have in anything else, except for Velcro (yup, another Velcro reference!). My children know how to make iPods fly through the air, and down the stairs onto the concrete below. So far we have had 3 iPods in the past 2 or 3 years, and only one and a half are still living.

17. When clock goes Beep Beep then go night night!
      - If you know what a time timer is raise your right hand, if you have one in your home raise your left hand. If you have both hands raised run around like a crazy person! Wait, I do that even without both hands raised! Aiden is finally understanding the concept of first then. First clock goes beep beep, then we go night night. We have a huge 12" clock on the wall called a Time Timer. Google it sometime if you aren't sure what it is. Bear in mind I do not have any financial connection to this company, but by George I wish I did!

18. Oooo he's my little run away.
      - It may be an old song, but it is also one of my biggest fears. Aiden thinks that running away is fun, and that it is even more fun if he doesn't respond when you ask where he is. I fully understand why parents leash their kids, and with all the running Aiden does at times I think there should be a leash law for children under the age of 18!

19. Is it a baby gate? Or is it peace of mind?
      - Have you ever thought about how shiny and cool looking a knife is? What if you put it in a light socket? Yup, both Aiden and Scott have tried it. Thankfully we caught them before they could complete the task. After that we bought a ton of those little plastic cover things that make it so that kids can get to the socket but the parents can't. Isn't that how they work in your house? Since I couldn't get them off we elected to go the route of having multiple baby gates throughout the house. Now I just have to remember to open them or step over them when I am running for freedom in the middle of the night!

20. Allergies to lil bow wow
      - My kids like dogs and cats, but their respiratory systems don't like the animals. That is why I have a naked mole rat as a cat... I mean a Sphynx, and I have an Italian Greyhound for a dog. They don't shed, and they both like to cuddle. That is until they figure out that I left half a sandwich on the table, and then they are gone. I guess they too have learned the joy that is a Peanut Butter and Butter sandwich!

1 comment:

  1. I have wondered about the trampoline. Have very much considered bringing it into the boys' room. It's not a mini one but the mid-sized... The next house we move to, where Patrick can have his own room, his bed will be a trampoline!
    I will have the check out the clock!
    Lots of really great ideas and new tools I didn't know about! The baby gate doesn't work for my little monkey. Even the tall one. With a small one stacked on top :( but there is a very high hook lock on the top of the bathroom door so I can store all sharp knives and scissors in there! Weird having steak knives in the bathroom closet but it's all about peace of mind!

    The best thing that works for us when people are staring and making comments about a fit in the middle of walmart or just squealing out of happiness: singing very loud. My 7 year old and best friend love to do this in the middle of the store to get the negative attention off of Patrick. The stares turn to giggles and sometimes even starts an acapela sing-a-long across the store with other shoppers lol

    I agree on the leashes! I need to get one, desperately. Patrick doesn't mean to run away... he just really likes to run and explore. It's getting mama back in shape! I run much faster now than I did 2 years ago!

    I will be trying the therapy swing. And I am so thankful for gluten free, off-brand oreos, pop-tarts, and gummies! Patrick hasn't had an issue yet with the yellow blue and red additives, thankfully! He does have an unhealthy obsession with cheese right now... the less I buy, the less he can sneak into the kitchen and eat before I find him!

    Haven't broken an ipod or tablet, yet but the day will come, I am sure.

    I am in desperate search for a babysitter who I can trust will pay attention to where the very quiet but sneaky child is....... I need a night out! lol

    Again. Thank you guys for sharing with me!

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