Sunday, January 29, 2012

Speaking of Autism...

Have you ever noticed that when people hear you have a child with Autism their first response is always the same? I have a (insert random person related to them only by five marriages) who is Autistic.

Really? You know someone who has Autism? What all do you know about Autism? Oh, you don't know what it is you just know that they have it?

Yup, that's the normal conversation, and it annoys the living crap out of me! Pediatric AIDS, Leukemia, and Diabetes combined have a less frequent occurrence than Autism, but most people can tell you about at least one place to go for treatment for any of those disorders.

Right now there are people sitting in D.C. lobbying for money for all sorts of childhood disorders, but Autism is mostly overlooked. Why? Because Autism doesn't have a face. There is no "Autistic look" or anything that gives Autism away until you actually see a child, and know why they are "acting strange."

This week there will be a great group of Autism Warrior Moms and Dads who will be going to D.C. to lobby for a bill. H.R. 2288, Caring for Military Kids with Autism Act (CMKAA). Right now funding is restricted for  the children of Active Duty members, and is denied for anyone who is Retired, or has been discharged as a Wounded Warrior. Autism Speaks will be sending a representative to talk to our lawmakers, and my wife prepared a video for Autism Speaks to present.

Right now there is a petition online that I really want people to sign. As I post this we need 23,994 more signatures in the next 24 hours to show Congress that we mean business. People all over the U.S. came together to stop SOPA and PIPA, lets come together to show our children that we do care, and lets make our politicians listen to us when we say that we need to cover our children!

The petition is located here

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!

      - 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!

Sunday, January 8, 2012

A mom's reflection on the past two years since diagnosis

This is my first time blogging, so bare with me please.
The past almost two years since Aiden has been diagnosed have been a rollercoaster ride. How did we handle getting the news of him being autistic, really well when you think about it. Our hearts did not break and our dreams were not shattered, but we did not jump for joy either. We just took it as another step. We knew something was going on, we were not naive or anything, we were just glad to have a definitive answer so that we could research and start the next step to our adventure. We started him in OT as soon as there was an opening, but then shortly afterwards we had to move to San Antonio, which was a huge change from everything we had known in Colorado Springs and before.
Did this move set us back, yes yes it did.
Were we discouraged, no, it just pushed us to make sure we got him into see the right people as soon as we got there. This then started our journey into the world of ABA therapy. It is a godsend, I personally believe it is what has helped Aiden out the most. All of his triumphs happened during ABA therapy first, and then only time would tell if he would generalize those skills to everyday life. Looking back now, a little over a year after he started ABA therapy, Aiden is a completely different child than he was back then. He is happier now, I get to see him smile all of the time almost.
Some would ask if I was ever worried about Scott also being on the spectrum. I would have to say that yes, the thought was always in the back of my mind, but I did not fret about it that often because at the time Scott was doing things that Aiden was still working on. Aiden had stopped walking when we first moved to SA, Scott started walking before Aiden started back up, and he was just nine months old at the time. That's really young to be walking. Scott hit all of his milestones well ahead of when he should have, most parents would be proud about that, and I was, but I was also secretly afraid, because that would also mean that he has farther to fall when he starts to regress.
We tried to keep that from happening, whenever one of Aiden's OT or ST's would give me some "homework" to work on with Aiden, I would use it for Scott to. It worked out great since they were both functioning at the same level. I would also work side by side with Aiden's ABA therapist for Scott, mainly so that I had something to do while she was at the house, but also because I was still slightly afraid for Scott. That is why I worked so hard on getting Scott to make eye contact, that is the one thing that Aiden did before Scott.
That is also what is biting us in the butt at the moment. Scott finally fell, and fall he did. Scott was doing so great, he was talking in one word sentences like he was suppose to, he would socialize with others, as long as Mommy was right there. The minute I would go out of the room, the screaming and tantrums would start and continue until I came back, no matter if it was just for five minutes of two hours. That's when I started to really get worried.
But when we had him evaluated at 18 months, he got the diagnosis of social anxiety. I could handle that, we were suppose to see a psychologist for him, but she never set up the appointments and would never return my calls. Then we got word we were moving again, just after we got told we would be staying in SA.
That was heartbreaking, but the move this time was not so bad. Aiden did not regress when we moved, we worked with him the whole way and he kept most of his skills. It did take us a little while longer this time to get his services started up, but up and going they are, and he is doing great. I absolutely love his ABA therapists, they are amazing women and I cannot think them enough for what they are giving us.
Scott on the other hand, stopped talking, he started having tantrums where he bangs his head on the floor, he hates loud noises and will bang his head on the wall when I vacuum or have the dishwasher on. He also started to make sure things are in lines, perfect neat lines, sorted by color, size, or number. That is why his favorite toys are trains, they stay in lines, they follow lines, that are perfect for his OCD.
But that's the problem, because he technically plays "appropriately" with them, when in reality, they allow him to not get upset every five minutes when Aiden knocks over his perfectly sorted blocks. Scott is also having a lot of sensory problems, too. He use to not care about the feel of his clothes or of his diapers, but now he will not let us come within five feet of him with a disposable diaper, so we switched to cloth and he lays down for us and lets us change him. He will not let us put clothes on him, but we have found that he loves Eric's socks, he wears them as his pants. I know it looks weird, but hey that's us, we're the weird family.
When we took Scott to see the Developmentalist on post, he said that his OCD like tendencies are typical two year old behavior, that his lack of speech is just there, that he is social enough, and that since he has great eye contact he's not worried until he's able to test Scott's cognitive abilities at the age of five.
I'm sorry, what did you say. That's right this doctor still seems to think that eye contact is still a defining symptom of Autism and that he has to be mentally retarded to be on the spectrum.
Sorry but no, over half of the children who are diagnosed on the spectrum have impeccable eye contact, because they were trained by their therapists and parents to have it. And most kids on the spectrum have an above average IQ, look at pretty much all of the famous ASDs. Heck meet Scott's older brother Aiden, who is three and knows his alphabet forwards, backwards, and inside out; who can count up to 30, can write his own name, knows all of his colors and shapes, knows just about every animal out there, and is starting to teach himself how to read. That's right I said teach himself, because neither me nor his therapist are working with him on that and I caught him the other day reading a few words out of his Dr Seuss book. His mind is truly amazing and anyone who still thinks that if someone is on the spectrum then they are mentally retarded, then they haven't met my son yet, and they won't know what hit them when they do.
So after that horrifying appointment with the developmentalist who still hasn't caught up with the new research on ASDs, we talked to Aiden's ABA therapists. They are all very concerned about Scott and they assured me that getting a second opinion is a very good idea. So we got the new referral and we got put on the 6-9 month waitlist to see the Seattle Autsim Clinic. We thought we were doing good with that, until 15 minutes after I got him on the waitlist we got a call saying there was a cancellation and we had an appointment within the week.
I don't think I have ever jumped for joy before, but I sure did that day, and that was only a week ago.
We went and saw their intake nurse and she assured us that Scott has some concerning areas, in all three diagnostic categories. She referred us to a research study that is looking at the link between autism and the attention to and control of emotions and social development. She felt they could get him in to be evaluated sooner than her clinic could, and they use the same psychologist as them for their evaluations.
She was right, Scott has his evaluation set for next week, I'm excited and scared for him. I know this will be a good thing because we can get him diagnosed and get him started in the therapies that will help him. Heck we already have therapists jumping over one another to work with him, we just need the diagnosis so that insurance will allow it.
I know that makes me sound like I am wanting Scott to be autistic, and its not that. I just know my child and I know that he needs ABA to help him with his anxieties and social problems. I'm just doing what I can to get him there. And I blame myself for him not being blatantly obviously there, because I did therapies with him, I worked with him to get him where he is. That has helped keep him from regressing any further than he has.
And when he gets the diagnosis, that will make my days even busier.
Right now I am having enough trouble juggling Aiden's OT, ST, 20 hours a week of ABA, plus him starting school this week. Then we are making weekly trips to Seattle for Scott for the research study and to get him diagnosed, and i will have to add Scott's ST, OT, and 20 hours of ABA onto that. Which alone will be making my head spin, let alone me trying to get my school work done, which reminds me, I start my bachelor's program the end of February.
This is going to be one incredibly crazy year.
This weekend has been a crazy one.
I should have added empathy to Aiden's strengths earlier.
Friday, I was sick, I had stuff coming out of everywhere and it wouldn't stop so Eric had to take me to the ER. While he was getting the boys dressed, seeing as it was past their bedtime when all this started, Aiden came and looked me right in the eye and said, "mommy sick, mommy get better, mommy okay." He was so worried about me, it made me cry, it made me okay with going to the hospital, I hate doctors (I'm okay with yelling at them about the boys but when it comes to myself, I just prefer not to see them, they never have any good news). After spending 4 hours in the ER and taking in 3 liters of fluids and who knows how many meds, they let me come home. I had at least stopped volcanoeing. Aiden was still worried when I got out to the car, he kept telling Eric that "mommy sick, mommy no feel good, mommy get better"
I was proud of my little guy, even if I did not feel well, I was proud.
Now both Aiden and Scott are sick with me. We were all watching Thomas the Train this evening on the couch. The fact that they both were laying on my for the entire length of the show says they were not feeling well. But Aiden showed his empathy yet again in worrying about Scott when he fell asleep. Aiden covered Scott up and told him to, "get better misser fisser" and then Aiden went and laid down and covered himself up and fell asleep. I couldn't be a prouder mom. My boys might not be conventional, or "normal," but really what is? My house looks like a therapist's dream home, as said by all of Aiden's ABA and visiting ABA therapists. But its mine and I wouldn't change it for the world.

Friday, January 6, 2012

Oh, the people you meet!

The conversations you have when a child is diagnosed on the spectrum are completely different than other peoples conversations. Apparently I have no idea what Autism is, or what treatments are available for it. I have had at least 3 conversations over the past week with people who are telling me about how their nieces, friends, second cousins, half brothers, half sister told them about this great new study that shows something works great for autistic children, and I should try it.

Yes, I know about medical supplementation, hyperbaric treatment, chelation,vaccines cause/don't cause/may cause, ABA, OT, ST, PT, ABCDEFG! If I were an unconcerned parent I could maybe understand, but I can only listen to so many people tell me that I should have my son on treatments x y and z before I tell everyone to jump off a bridge.

So, just so that I can debunk myths, and place my thoughts out there for everyone to see, here it goes.

CAUSE: Genetic or environmental? Yes. Not yes genetic, not yes environmental, not yes to both, just yes. As of right now no one knows the exact cause, so until there is a definitive cause yes.

VACCINES: I think vaccines are safe. For those who don't like it... tough luck. I vaccinate my kid so you don't have to!

DIET: Gluten free has helped Aiden. We have seen a huge drop in his behavior issues. Does it work for everyone? NO! If you choose not to have your child on a GFCFSF diet does that make you a bad person? NO! It means you made the decision not to follow that plan on your own!

CHELATION: Not gonna do it! Does it help? Some people say yes, some say no. I personnally don't want to pump my child full of yet another chemical to withdraw another chemical. It just doesn't make sense to me.

That is enough rambling for one post though. A new one is already in the works. Bye for now!