Thursday, December 31, 2009

Happy New Year!

We hope we can have a year of good health, growth and happiness. We wish the same for all of you in the blogosphere. Happy New Year!

Wednesday, December 30, 2009

Using an ipod touch and Proloquo2go as a communication device

Over the weekend Pat got an ipod touch. I was looking through the app advertisements and came across Proloquo2go which is an app that can turn the ipod touch or ipod touch phone into a communication device. A couple of people had mentioned that they had heard of an app that you could use with the ipod touch but I never pursued looking into it becuase I just didn't realize how accessible and affordable it could be. We have been jumping through hoops with the school district and their very slow pace of aquiring something for Stephen and I am sick of waiting! Once I saw the demo video I was immediately excited and wanted to get one for Stephen asap! Click on the link for introductory videos once you get to the website to see what it can do.


http://www.proloquo2go.com/

We are getting grant money to buy the ipod touch, this app, a case and a 2 year warranty which will be a total cost of about $500.00. We won't have to wait for the school district to test out all these archaic devices and wait for the insurance company to approve a device for him. Most AC devices cost $5,000 and up and it's a big production to get one. I will definitely keep you all posted on how Stephen does with it once we get it and he gets used to using it. $500 is not cheap but it is a lot more affordable and an ipod touch and this app is much more accessible to the general public.

Do any of you know anyone who has used this for their children?

Friday, December 25, 2009

Happy Holidays!!

Hope you are all enjoying this time with your families : )

Monday, December 21, 2009

There goes my mom of the year award....again.

Anyone who has children knows that it is impossible to project any picture of perfection ....especially in public. Any child is going to test your limits and the limits of what is appropriate behavoir in public.

I don't care and never really have cared what other people think of my family or my son when we go out in public. However, because of his Autism and the tantrums it can cause, we just don't take him out to stores very often, he has not been in a restaurant since he was very little and he has never seen a movie in a movie theatre. We just got used to running errands solo or with Olivia because his behavior was so unruly for so long. We wouldn't take him for a while and then we would give it a shot and it would be a disaster.

We have always been consistent when he has had a meltdown-immediately remove him the the store/situation and not give in.

As Stephen has gotten older he has matured so much and learned how to behave really well most of the time. We have been taking him out more over the years as he has been able to tolerate all the noises, smells and stimulation that being a public place can bombard him with. He has learned that his tantrums will not be tolerated and will not get him what he wants. Over the past couple of years there have been maybe one or two times we have taken him to a store and he has had a complete meltdown.

This ratio of high success to low meltdowns has lulled us into a false sense of security when taking him out. Just like the two seizures he had in the almost 4 years since he was diagnosed blindsided us, this weeks full blown meltdown showed us that we still have to handle Stephen with extreme care and be more sensitive to his triggers when we take him to a store.

We went to Target and got there right before it opened on Saturday morning. We were excited to be there while it almost empty and felt so confident that this would be a problem free shopping trip. Why wouldn't it be? We had all gone to Walmart two weeks before right when they opened and shopped for two hours and Stephen was cool as a cucumber except for the occasional bout of loud echolalia in an annoyed tone to tell us he was getting impatient.

So we had gone to the book/movie/music section of Target and Pat stayed there with Stephen and Olivia and I went to hunt down a Mr. Potato head for my friend's son for Christmas. Pat and Stephen caught up with us and Pat showed me a Golden Books 65 year anniversary collection that Stephen wanted. I looked it over and said no. He has had every single one of those books individually over the years and had not shown any interest in them over the past year and I had donated most of them. Of course, the fact that Stephen is so picky, can't verbally tell us what he wants most of the time and his adorable little face made me put it in the cart. And immediately I changed my mind and made Pat take him to put it back.

That was a bad mommy move and boy did I pay for it soon thereafter.

Pat came back with Stephen and the books. I took him back there myself and a battle royal ensued. First, Stephen dug and then scratched the backs of both my hands when I tried to make him leave the area. Then he was screaming full force and pulled on me and was acting like the stone that could not be moved. I ended up calling Pat's phone and he came over and walked BEHIND/BESIDE him all the way out to the car while he screamed and carried on.

I was waiting for security to tackle Pat and accuse him of kidnapping. Luckily, this has never happened but you have no idea how hard it is to get a tantruming 11 year-old out of a store without a lot of very concerned eyes on you wondering if they need to intervene in what looks like a possible kidnapping.

I didn't want to give into the tantrum because we never have. Stephen is going to be a full size man some day and we don't want to have to deal with man size tantrums!

WTF just happened?!!!

Number one-Stephen just really wanted those damn books. This could not have been predicted or avoided.

Number two-I put the books in the cart. That is Stephen's signal that we are going to buy him something.

Number three-I took the books out of the cart which basically told Stephen that I was a horrible mother because I made him think he was getting his precious books and then snatched them away. Bad mommy.

I never should have put the damn books in the cart. That must have been very confusing for him. But I also didn't want him to think he was going to be able to get his way after freaking out and hurting me so we had to stick with the decision to not let him get the books and follow through with removing him from the store.

Would Stephen still have had a meltdown if I had never put those books in the cart? Don't know. Autism is like a box of chocolates, you never know what you're going to get. This kind of experience made me realize once again, how unpredictable Autism can be. Yes, I will continue to be happy about and celebrate all the times he is well behaved and we are able to go about our business in a store without incident. However, as this little scenario illustrates we need to always be on our toes and never assume that he isn't a very sensitive and very unpredictable boy.

This story does have a happy ending. After spending about 15 minutes in the car with Pat and Pat driving to another entrance in the mall, Stephen was back to his calm self. We sat on a bench inside and waited for Hallmark to open. He was very affectionate with me. He found a little Dr. Suess quote book and I bought it for him because I knew I was a twirp for what had happened in Target. I also had a $5 off coupon! But Stephen thinks he got the book because he was being calm and well behaved.

Later that night when we got home I found that Golden Books collection on line and got it half off with discounts and free shipping. I'll save it for his birthday so he won't think he got his way. I know I had a moment where I goofed as a mom.

Being a good parent is being able to admit to your kids you messed up and that you are sorry.

I hope he gets that message when he opens those books up on his birthday : )

Thursday, December 17, 2009

Winter, OCD, germs and handwashing



How old do you think this person is? 60? 70?
Try 37. These are my hands today after I cleaned the cat litter box and the downstairs bathroom. It isn't even 10:30 am and I still have a day full of more hand washing ahead of me. Oy. Winter means bleeding, cracking and stinging hands after applying lotion. Some might call me a germaphobe. I have not been diagnosed with OCD. Whatever the reason, I wash my hands a lot. I have lotion pumps in every room in my house except the basement, attic and the kids rooms. I wash my hands before preparing food, after preparing food, before serving food with my hands (if I will be touching the food like brownies) after touching anything that is not clean (which means everything), before I eat, after cleaning anything dirty or germy (which means everything), after cleaning with sanitizing wipes or sprays or any spray that has chemicals in it, after going to the bathroom, after touching the dirty laundry to put it in the washing machine, after I get home from being out, before unloading clean dishes from the dishwasher, after loading the dishwasher with dirty dishes, etc.
I already try to group doing "dirty" things so I can cut down on hand washing but clearly that isn't working. I put lotion on and then it gets washed off before it can sink in. I have a box of sterile gloves in my bathroom for suppository insertion (Stephen can't take oral meds when he is sick) and I think I need to start wearing them. I don't think my level of hand washing is unreasonable. I just know how germy everything is and don't want myself or my family to get sick.
Am I the only one that washes my hands this much? Does anyone else have this problem with super dry bleeding hands in the winter?

Wednesday, December 16, 2009

Autism and stimming, echolalia

Here is an example of Stephen stimming, for a about 2 minutes before I shot the video, and how he is able to stop and clean up without becoming upset. I think he was upset with me telling him how to do it, LOL! I am known for being a control freak, I mean bossy, I mean assertive. This used to be a basket that had soft toys in it that we designated as appropriate for him to toss in his room. He wasn't using it for about a year so we put cat toys in it and put it in the living room. This is the first time he has done this with the cat toys since we repurposed the basket and moved it to the living room.

We have never restricted his stimming, unless it was a safety issue or inappropriate in what he was doing or in a particular setting.

This video shows Stephen fidgeting or stimming with his necklace. If any of you parents know of a more stylish but just as fun necklace that I can make or purchase, please let me know! He is also exhibiting his echolalia, repeatedly saying the same thing over and over. This clip shows him quoting Dr. Seuss's "The Hoober Bloob Highway" . Those of you familiar with this movie will probably be able to make out what he is saying. I think he likes that particular movie so much because the baby is given a choice of who they want to be and I think, from various things that Stephen has been expressing lately, he wishes he were more "normal" : ( When I shot a bunch of these little clips yesterday he got upset watching himself. Have any of you with older children with Autism had this experience? Have your children as they have gotten older started to realize how different they are and been upset by it?

Monday, December 14, 2009

Autism is the mother of invention Monday-Family Christmas card photo

Most parents of children with Autism or special needs have had at least one instance where they have had to get creative to cater to their child's needs. Pat and I are blessed to be creative, do-it-yourselfers. We have had to build something ourselves or use something store bought in a way that it was not intended to be used in order to meet our son's needs, keep him safe, etc. When he was little we had to build a custom gate that was higher than anything that could be purchased in the store so he wouldn't wander around unattended at night if he got up while we were sleeping. We had to create a barrier for the middle of the back seat of our car to keep him from hurting Olivia when she was very little (we have a car with a 3rd row now for the rare time he is in a bad mood). We have created "curtain rods" from thick wooden dowels and used big hook screws to hold up our "curtain rods" so we would be able to have curtains that were not easily pulled down. The list goes on......

Every year we do our family portrait in front of our tree for our Christmas card. In our family there are very few opportunities for family traditions. We never know if Stephen will tolerate certain situations or be able to participate in the same traditions year after year without getting upset. Our family portrait in front of our tree has become one of the few traditions we have that Stephen has been able to be a part of which is why it is so special. And we look forward to it every year. It's one of the few times we get to do something that "normal" families do.

Now I know that getting that perfect photo with the any kids, special needs or not, is no easy feat. But maybe because we are able to get that perfect shot year after year, despite extra special circumstances that Stephen's Autism presents, makes us feel a huge sense of pride. Our "perfect" family portrait also represents how we have managed to thrive and be such a loving family in the face of all our challenges.


Here are some of our past family portraits-






We have different techniques for coaxing a smile out of Stephen for these photos. It's not that he doesn't smile spontaneously on his own. He smiles all the time. He just doesn't smile on cue. He is not capable of a fake smile. When Stephen smiles it is completely genuine. So I always feel a little weird trying to get him to smile for our family portrait. We have tickled him, put the camera right in front of the tv with a show that he likes on, sang silly songs and acted goofy, etc. Even though we are doing things to get him to smile, make no mistake, it is still a genuine smile. When he smiles it is because he is really happy or excited.


Well, this year we just couldn't make it happen. Either Olivia, Pat and I would be smiling and looking at the camera and Stephen would be looking very unhappy, had his eyes closed, etc. or Stephen would be looking right at the camera and we would all be out of focus. We took as many family portrait photos as he would tolerate in front of the tree and figured we could work with at least one of them. I went to Walmart.com to make the cards and just couldn't use a single photo and feel good about it. Then I saw that they had a layout with 3 photo frames. Pat suggested we have Olivia take a picture of him and I for the middle frame, we'd use a photo I had taken of Olivia in front of the tree and Pat and I would go up to Stephen's room and take a photo of him there. Sure enough, Stephen was much more comfortable in his room, in front of his computer and with a little foot tickling by Pat we got a great photo of him.







Although we are a little sad to say goodbye to our old tradition we now have a new one. This new way of composing our family portrait for our Christmas card is more in line with how we feel about real happiness in life. It's not about looking perfect. We don't believe in form over function. We are definitely concerned with cake and like frosting but know that too much will make you sick. Style will never be more important to us than substance.

I have a new sense of pride with this year's Christmas card. I think our photos look great this year not because we were able to get that "perfect" shot which is so coveted and sometimes unattainable even for families with "normal" kids or looking like the "perfect" family for a millisecond but because our challenges bring out our creativeness and not just ability but WILLINGNESS to do whatever it takes to have a happy and healthy family. We don't just look happy, we really are happy : )

Wednesday, December 9, 2009

If you are injured in an accident, call a lawyer!

Seriously. This was one of the biggest mistakes I made after I was injured in my accident. If I had consulted a lawyer they would have told me to seek treatment and not stop until I was fully recovered or had done everything I could to recover and was not getting any better.

Now I have a "gap in treatment". Gee, wonder why. I am the ringmaster of my own little three ring circus. I had a ruptured ovarian cyst that could have killed me, moved, had other tests when they found a cyst on my kidney in the MRI I had done after my accident. My daughter was seeing a different specialist a couple times a month. She was sick with pneumonia and I had to keep her home for days everytime she got sick.

I had a doctor that never referred me to the appropriate specialist, I was just told to get an MRI and when it came back "clean" was told I could go to a chiropractor or PT. I didn't like the idea of a chiropractor so I figured I'd try PT. I scheduled my first appointment which I believe was a month away from the day I scheduled it. I had to cancel it and never rescheduled because I didn't trust them to not mess me up more without me being examined by a specialist. So I just lived with the daily pain and stiffness and figured it would go away. Why shouldn't it? I was fit and healthy and had never had problems with my back or leg and foot before the accident. I also tried to be positive and think about how much worse it could be but wasn't. I also figured that after a couple of months of not seeking treatment that I wouldn't be covered by the insurance. Well guess what, I'm in more pain now and now the insurance company is telling me that my claim is closed! However, I have not reached a settlement witht the other parties insurance because I am still seeking treatment.

The lawyer I consulted with told me that after a year, I can't prove that there is any correlation between my current back pain and cramping/pain in my right buttocks accompanied by hamstring weakness and foot numbness. Apparently, it is perfectly acceptable for the other parties insurance to assume that I did something to my body after I stopped treatment that is giving me these symptoms. He said we can fight it but the ""gap in treatment" will make it very difficult. Hmmm. I was healthy, very active, exercised and pain free before my accident and after it I have never been the same and am plagued by chronic pain, muscle weakness and numbness. Gotta love the insurance companies.

So I am trying to focus on just getting treatment and hopefully regaining my previous healthy and pain free existance. Don't be a fool like me. If you are injured in an accident, call a lawyer!!!

Monday, December 7, 2009

PTSD?

As I mentioned in my previous post I had a car accident in November 2008. I was rear ended while stopped at a red light. I suffered a back injury and have had problems with my right leg and foot. As if the pain of being injured wasn't enough I have come to realize how much I have suffered emotionally and mentally from my accident.

I am afraid of not only driving but also riding in a car. Because I was rear ended I am constantly afraid of it happening again and getting injured again whenever some one is driving too close behind me. This happens A LOT. Am I a magnet for people who don't understand that you shouldn't drive that close to people? Am I just hyper sensitive and that is why I notice it more than someone else? Every time I come to a yellow light I go into a panic. Should I hurry up and get through? What if it just turned red and I am almost to the light, do I slam on my breaks? I look in my rear view mirror to see how close the person is behind me to help me make the decision. Every intersection with a traffic light causes me stress and panic. Even a 5 minute ride down the street leaves me shaking and stressed out.

I refuse to drive in a city or on the highway. I schedule all appointments that require driving in these areas on Friday so Pat can drive. This is usually a day off for Pat and the one day we could have "alone time" without the kids. Regular followers of my blog know the constant drama we have and understand why this is a big thing to sacrifice. I'm also constantly telling Pat how to drive and look out for this car and that car, etc. Needless to say, he is being affected by this too.

I constantly look for reasons and excuses not to drive. Even lure of freebies and really good coupon sale matchups aren't enough to get me behind the wheel lately. I maybe drive one day a week and try to do as much as I can while I'm out so I don't have to drive again for a while.

I get startled when I hear the noise of an accident on tv and in movies. I don't even want to look at car accidents on the tv or on the side of the road. It freaks me out.

My pain is a constant reminder of the accident and the potential to be injured, maybe worse next time, by a car accident. I have been in a couple other accidents and have never had this reaction. I have always been able to "get back on the horse" so to speak.

I saw my Dr. because of my physical injuries and mentioned all these symptoms to her. She thinks I have PTSD, Post Traumatic Stress Disorder. I am trying to get an appointment. My insurance company is starting to be a pain in the butt, pun intended, and the other party's insurance (she was at fault) has already called about a settlement. I have no idea what the hell I am doing or how to handle the insurance companies so I am off to see a lawyer tonight. I will have to drive at night. I am already anxious and trying to mentally prepare myself. Hopefully, finding out what my rights are will give me some piece of mind and help me get the treatment I need without getting screwed over.

Thursday, December 3, 2009

If you focus on the rain you might miss a rainbow

I've become quite a recluse in the past year. Since my accident in November of 2008 I have had pain in my back everyday. I can't get comfortable and everything makes it hurt. Sometimes I get severe muscle cramping in my right buttocks that creates weakness in my thigh and cramps up my calf and makes my foot go numb. All this physical pain reminds me of my accident every day. I avoid driving. It just plain scares me. The world in general scares me. I have suffered a lot in the past and dealt with a lot of jerks and scary situations. Since my son's diagnosis of Autism we have had to fight so many battles with the school and other people's ignorance. But somehow I have developed a positive attitude about life. I really try to find the silver lining.

But my accident has really done a number on me. The world outside my door has come to represent endless opportunities for pain, frustration, injury and death.


I think God was trying to tell me something this morning. Something that I really needed to see.


I went to put Stephen on the bus and this is what I saw.







A big ole tree limb had fallen where we normally have our car parked. I thanked God Pat had taken the car to work this morning. This freaked me out when I thought of what could have happened to our car if it had been parked there. But it wasn't. God spared us that drama. This fallen tree limb symbolizes how I have viewed the world lately. Full of potential drama, disaster, damage and things that could make my life more difficult.


And then.....
I went to put Olivia on her bus and this is what I saw.

A flippin' rainbow! This is what God wanted me to remember that I have forgotten. The world outside my door does offer the possibility of rain and fallen tree limbs but there could also be rainbows. If I never leave my house I could be avoiding not only the painful things out there but also the wonderful things.

I also think that this experience clearly illustrates that even when we are going through pain or hard times there is always some lesson that can be learned or something wonderful that comes out of it that we never would have expected. I guess I have to start stepping out more often or I could be missing a lot more rainbows.

Wednesday, December 2, 2009

How many doctors does it take to diagnose my daughter's skin disorder?

I'll let you know when she's 20!!! Seriously, that seems to be the consensus. The 2 appointments to the Geneticist in the past year gave us the diagnosis of Segmental Neurofibromatosis but she said 100% certainty can't be reached until she is an adult. The appointment with the Neurologist gave us the same diagnosis. However, she suggested taking her to a Pediatric Dermatologist, when I brought up the missing pigment she has on her left shoulder and left side of her neck.

So, the Pediatric Dermatologist we took her to last week says she has THREE different things going on with her various skin markings! I am not kidding! She thinks that the large cafe' au lait spot that goes from the underside of her left arm starting at the elbow onto her left chest and left side of her back with the gazillion freckles in it is Unilateral Nevoid Lentiginosis or the other name for it, Segmental Nevoid Lentiginosis. She thinks the missing pigmented areas are Nevus Depigmentosa and the small cafe' au lait spot on her right calf with the moles in it is Nevus Spilus (it occurred to me that it looks like a chocolate chip cookie while the nurse was taking photos, lol). One new discovery she made is a lightly depigmented area on her left eyelid when she examined her skin with a Wood's lamp (looks like a black light). She said that it could mean that her missing pigmented areas are Vitiligo but they would have to be white for that diagnosis which might develop later.

In conclusion she said that all the different things do not have complications or any negative side affects. However, when I asked her if she was sure about this not being Segmental Neurofibromatosis she said we wouldn't know until she is about 20! For reals, people. So we just have to wait and see what does or doesn't develop.

She said we don't have to do any more hearing tests or Neurology check ups which is good. Lord knows we have enough other issues to keep us busy!

Tuesday, December 1, 2009

Why I hate the "R" word

This topic is a thorn in my side, a bee in my bonnet and every time I hear the words retard or retarded I want to scream or break something. Just typing those words, which are so offensive to me, makes me feel like I am committing some horrible crime against humanity. I am all for freedom of speech but those words and there common usage to describe someone or something as uncool, stupid, lame, bad or less than human makes me feel that they are just as bad as the "N" word or any other hateful slur.

The "R" word is used because people fear being different, dependant and defenseless. They use the word in an attempt to distance themselves from something they know deep down inside they have every chance of becoming due to stroke, drug and alcohol abuse, illness, traumatic brain injury from war or an accident or old age.





I love my son. He is very special and precious to me. I am overflowing with pride at all the things he has accomplished in the face of all his challenges. He has taught me so many things and made me a better person. The fact that anyone looks at him with disgust or hatred for being mentally challenged makes me angry, sad and fearful.

I'm angry because most people still pepper their conversations with the "R" word like it is no big deal. Even people close to me use it. I get tired of telling them not to. They should know better. These are people who know and love Stephen. But the fact that they say it to me and probably everybody they know shows you how accepted it's use is in our society. I have very rarely used the word and when I have it has been in reference to other's use of it and how much it upsets me. I never said it before I had Stephen. Now, I swear like a sailor but I won't use that word or any other slur against a group of people. All those hateful words have always disgusted me and I have never used them and don't understand why others find it necessary. I judge people as individuals. I don't discount or hate whole groups of people based on their skin color, sexual orientation, weight, mental and physical challenges, etc.

I'm sad because the people who use the "R" word are reducing all people with mental challenges to something less than human. It is spoken with the intent to insult someone or something. It is not a positive word no matter how you look at it. My son is one of the sweetest and well behaved kids I know. And he has every excuse not to be. And even if he wasn't so well behaved because of his Autism, he doesn't deserve hatred or disrespect. I see some of the worst behavior in "normal" kids on "Supernanny" and those kids know better. They are usually the result of horrible parenting which is preventable. My son did not ask to be born with Autism. He can't help his odd, repetitive and obsessive behaviors. My son is trapped inside a body that won't act the way he wants it to. He knows he is different. How cruel is it that people target and pick on and hate on people like my son who can't verbally respond to their ignorant comments?

I think that people who use the "R" word are saying more about their own emotional and intellectual impairments than the people they are describing.

I am fearful because the prevalent use of this word means my son is a target for abuse, neglect and worse. What is going to happen when I and my husband die? Who will protect him from this rampant hatred of people with mental challenges?

The next time you "slip" and use the "R" word or brazenly pepper your conversation with it in an attempt to be funny remember you are spreading hatred about people like my son, a vet who has a traumatic brain injury from being in a war, somebody's loved one that had a stroke or Grandma with Alzheimer's. Remember, someday, when someone uses the "R" word they could be spreading hatred about YOU or someone you love.

I haven't been blogging for months. Sometimes I feel like there is no point when I don't get any comments on my posts. I assume no one is reading what I write. I figure unless something "amazing" or "exciting" is happening with my life than there is no reason to blog about it. Then, I read and see all the negative things about Autism and people with mental challenges and I realize that is exactly why I need to keep blogging about our mundane life with Stephen. It IS "amazing" and "exciting" that I have a loving family that functions and thrives because of all our challenges in this hateful dysfunctional world. I need to keep showing how wonderful our life with Stephen is because it just might change one person's view of people with Autism and make them stop and keep their mouth shut when they are tempted to say the "R" word. Maybe just one person will use one of the millions of words in the English language to more accurately describe something bad, uncool, stupid, lame or less than human without insulting millions of human beings that need and deserve our love, patience, protection and understanding.