Friday, February 26, 2010

Ups and Downs

No one said that life would be easy. As a matter of fact, most of us learn on the playground that life is anything but easy. But for those of us with special needs children, sometimes we wonder if someone just wants to play with us over and over again. Living with a child (or two) on the spectrum is full of ups and downs. There are many tiny accomplishments that for us as parents seem huge and then there are many disappointments too that seem to bring your world crashing down. Just when things seem to be going really good and in a positive direction someone throws another brick wall right in your way and if you aren't careful, you get smacked in the face with it.

Yesterday was like that for me here. Things have been going so good since we put Justin on his new medication a few months ago. Even better since we started taking off the other one. Even tyler was starting to get less angry and irritable and just yesterday two days ago I found myself taking a deep breath, smiling and actually thinking, I made it through the worst and now things are getting better. It was so nice not dealing with the meltdowns and the fighting. I was actually getting hopeful and was so relieved that I started concentrating on my business that had been neglected a lot lately and I stopped worrying about the kids or getting through the next day.

Then Justin got sick with a cold and has been home most of the week and yesterday that boredom and irritability took its toll. Against my better judgment, but listening to the teacher, I tried to get him to get caught up on homework which only exasperated things and the result was a meltdown worse than any I have ever seen. It ended with his foot going through my window and during the clean up both boys were fighting. I also got a note home that the past two days Tyler has been having problems at school refusing to do work, throwing furniture, etc. And it begins again.

It seems to be like that all the time. You get a brief glimpse of a normal life and then everything comes crashing down. It wouldn't be so bad if the good days out numbered the bad days, but of course it has to be the other way around. Sometimes I find myself wondering how we, as parents, make it through and it is so hard to see the light at the end of the tunnel. I can only hope that we survive and at some point there will be peace and calm in the storm.

Tuesday, February 23, 2010

Update on the past week

Well once again time has gotten away from me and I haven't been able to post on my blog. With the kids home from school for winter vacation it was hectic and crazy and now I am home with a sick child/teen. Where does the time go?

In the past week I have accomplished alot. Justin went snowboarding almost all week with my dad and his cousin (THANK YOU DAD!!!) and had an awesome time and so I got to spend some quality alone time with Tyler. He and I went shopping, watched movies at home and even went to the movies together to see "Tooth Fairy" (his suggestion). Its amazing how much differently you view your children when you have them away from their siblings for awhile.

I also had Tyler to the doctors last week and found out he had a double ear infection and not once did he complain of being in pain, much to the doctors amazement. I took him in only because I noticed he had a hard time hearing (which isn't unusual for him) and was very surprised to find out his ears were so bad that they couldn't even see his eardrums (poor baby). We go back today for a followup. Hopefully things are better.

Then this past weekend my mom and I painted and wallpapered Tyler's room. I will post some pictures soon. It came out awesome (THANK YOU MOM!!!!). Then on Sunday I spend a few hours with my mom working at the Bristol Home show at the Autism Speaks Table. Boy did we meet some interesting folks there. I just love helping out when I can.

Yesterday I watched my nephew Alex and then went to watch Tyler play basketball for Hoops for Heart. He raised about $100 and even though he didn't really know how to play basketball he tried his best and I was so proud of him.

For the past two days I have been trying to find ways to improve my Avon business. I have started recruiting people and love it. I just love watching their faces when I tell them everything Avon has to offer them. I really hope that I can build my business up enough to be self sufficient. Wouldnt that be a real boost to my self-esteem. I am making it my goal right now. To work on myself after spending so many years completely ignoring myself and taking care of everyone else. Hopefully I can do this and still manage to get one kid ready for College and another ready for middle school (ugh, the worst years ever!!)

Well, come visit me on Facebook and join my Avon fan page. Its under Phyllis Parmelee - Avon Independent Sales Rep.

Wednesday, February 17, 2010

Pain and sensory processing?

I am curious as to how many of our children with Sensory Processing issues also have either a very high threshold for pain or a very low threshold for pain. Both of my children have sensory processing issues and both handle pain differently but both seem to be in the extremes for threshold. Justin, my oldest, seems to have a very low threshold, complaining at the smallest pain and completely over-reacting to larger pains. It almost seems like everything hurts him more than others (wonder if he has inherited my fibromyalgia).

Tyler, on the other hand, has a very HIGH threshold for pain. Just today I took him to the doctors office to have wax removed from his ears and he has such bad ear infections that they couldn't even see his ear drums. The doctor was amazed that he wasn't feeling any pain. Several years ago Tyler broke his arm (both bones) and barely cried. The ER staff said he should have been screaming, especially when they did the x-rays. He didn't even cry when they did the x-rays. I wish some of that could rub off on me.

I am interested in your comments and experiences. Do you have children with sensory issues, and if so, have you noticed a greater than normal reaction to pain?

Sunday, February 14, 2010

Making the Transition from High School to College - How Scary Is This????

So this week it suddenly hit me like a ton of bricks that Justin is going to be going to college in a little over two years. This is a stage of life that is scary for ANY parent, but for a parent of a special needs child this is TERRIFYING. I just love those friends or WELL MEANING family members who say, well he is going to be 18 and he has to be on his own. He has to make his own decision. You have to let go sometime. They have NO CLUE how much harder it is for special needs children/adults to navigate the real world and all those things that we just take for granted but that they have to be taught over and over again and even then may not always get it.

I am always accused of being overprotective or a worrier and I am sure that some of my family are considering this as just my next thing to worry about, but for those of you who have actually been through this, or are getting ready to go through this, you know exactly how I feel and what I mean. You know how this phase in your life feels like you are getting ready to jump off of a sky scraper with no net below and like you are doing that while at the same time pushing your own child out in front of a speeding train. You understand that just because a child turns 16 doesn't necessarily mean they are ready to drive and just because a child turns 18 doesn't necessarily mean they are ready to live on their own. So you will get this and I hope this blog helps you.

So in my search for information on how to help myself and my child get ready for this huge step I posted some questions to the various autism groups that I belong to and one woman wrote back what I think is the absolute most useful email I have ever received in my life and I asked her if I could share it with all of you and she said yes. Her son is in his sophomore year of college and there is alot of things that she had done to prepare him for this transition and there are also alot of things that she found out afterwards she wished she had done. I am sharing her exact words here in hopes that it will help you like I feel it is going to help me. Enjoy. Thank you Sherron Ostrander.

My guy is a sophomore in college, so some of this we prepared for, some of it is stuff I wish I could have foreseen. Some of these are for college only, but many are just stuff any child needs to know/be able to do before he leaves home. Some (like banking) apply to our NT kids too, and you'd be horrified to find out how many of them leave home not knowing them! Don't let him tell you, "moommm, you know I know that." Make him show you.
Knowing the theory and physics of playing pool doesn't mean that you aren't going to get hustled for everything you have.

Job interview skill! -- these apply to interviews for admissions and or scholarships, too. And later, talking to his advisor about his class schedule, etc.

How to organize and plan study time when your teacher is not going to remind you about homework or tests (and keeping a calender or some such)

Make sure that "self advocacy" includes making sure he knows he CAN ask for help, SHOULD ask for help, and who those people or organizations are that he can ask for help. Help him identify times when he could have asked for help instead of struggling by himself, not even knowing where to start.

Make sure that he understands that however unreasonable it is, FERPA will mean that he must sign (in some cases ask for and sign) legal papers to allow you to know anything about what is going on with him, like helping him and his advisor pick the appropriate, and the appropriate number of, classes. Many professors will not want to talk to the parent, only the student. It's probably a good idea for the two of you to go to a professor's office and introduce the two of yourselves. Make sure the professor has a copy of the LOA (letter of accommodation, which he is responsible for himself and is something of a 3 step hassle), and that your child gives permission to him to call or email you. In fact, the delivery of the LOA is a good excuse to go see the professor.

How to do laundry in a coin operated laundry. Start by knowing how to do laundry at home.

How to sweep, vacuum, mop, load the dishwasher, and other cleaning duties.
He should have plenty of chores already by the time he's 15.

How to clean out a fridge. How to know when something is spoiled, how to properly store food. How long things usually are still good. (ie, Eggs for weeks, but lettuce for days, and takeout sushi about 15 hours.)

Take your Aspie out in public. Make him do the grocery shopping. Make
him stand in line for movie tickets, and pay y'all's way into places with an entrance fee. These are "simple" to us, but things he may never even have thought about, much less feels comfortable doing.

Anything else you currently are doing for him. Remember, your main job is to make yourself unnecessary.

Banking, including writing checks and balancing a check book, and how to use an ATM and the difference between a debit card and a charge card. And how to talk to tellers! And that a check can be held for 3 days, in some cases, and that in many cities, 2PM is the next day at a bank. So if you deposit something at 2:01 on Friday, it's the same as depositing it Monday morning and you could possibly not have access to it until Thursday! Friday, if that Monday happens to be a holiday, in which case the deposit is counted as having come in Tuesday morning. Even if your bank is open on Saturday, that is NOT a business day, and doesn't count as one of your three days. Anything deposited on Saturday is counted as deposited on Monday. Of course, withdrawals of any kind are IMMEDIATELY charged to your account.
This includes ATM transactions.

You can get "cashier's checks" or a "bank check" at the bank, for free. You can also get money orders there, and many post offices, and that either of those will be much cheaper than any retail place selling them.

Speaking of that, he'll need to know what is appropriate I.D., and what NOT to give out, like social security numbers except for a job, or school registration, or some other big, trusted institution, but not Wal-Mart unless you get a job there. Cashiers have no right to your SS#.

Never to loan money to anyone. Never to give money to panhandlers, etc.

How to use a credit card. Get him one as an authorized user on your charge, and take him places where he has to do the paying. He needs to know how to (or whether to) hand it over (look for swiping machines). If he's worried about whether they even take credit cards, show him those lovely stickers with the different charge card logos that businesses put on their doors or over the register.

How to figure 15% in your head (or just take 2X the tax, in many states) and the importance of leaving a tip. Also that the tip can be added to the credit card. That money left on a table unattended in a restaurant is NOT lost.

How to prepare several simple meals, or make sure you get the full meal plan. Even then he'll need to know things like, "you NEVER put the popcorn in the microwave and walk away from it, because it doesn't take half the time they suggest to cook it in order for it to become a smoking bag of toxic waste."

How to write emails to professors, counselor/advisers, teaching assistants, lab partners, etc.

Give your lab partners (or group project partners) your email address and ask for theirs.

How to do group projects. They are very popular in some majors. This needs to be practiced in high school. This is another case where knowing the theory of groups is not the same as remembering to ask your lab partners before you take over the experiment because they obviously didn't pre-read the lab, and you know how to do it right. Or knowing to speak up when they are doing it wrong, instead of waiting for them to finish and then staying late to redo it properly.

Map reading — Many colleges, even small ones, are a confusing and disorganized jumble of buildings.

Even if you can't make yourself talk in class, sit near the front and look at the teacher or student who is talking and show interest. If the student agrees, I like for him to send a little note along with his LOA, saying something along the lines of, "Because Asperger's includes communication deficits, I may be unable to speak much in class. I can answer direct questions if they are informational and not for my opinion, and am given a few extra seconds to formulate the answer in my head." Or whatever applies in your case. If you're one of the lucky ones with a verbal kid, it might go something like, " . . . I may have trouble stopping myself from talking too much. I may need you to remind me to give others a chance, or that I am allowed to only ask 3 questions per hour." (There's an Aspie that is in several of my sons classes that has this in his LOA. My son is in the physics department, and of the 17 Aspies registered in the DSS office, 15 of them are in physics, math or some other field where they run into each other

Remember that community college is college too. If your child goes to a state run CC, in almost all cases, the credits transfer in full to any other in-state institute, including if these are taken in high school as dual enrollment classes.

I highly recommend dual enrollment for calculus, or Japanese or whatever your child's strongest subject is. They get both high school and college credit for those classes. It gets him out of the high school environment and into the college environment in small little chucks that help him "acclimatize."

CLEP anything he can. And remember that most CLEP tests must be taken before the student enrolls in any class in that series. ie, if you know he can CLEP out of Cal A, don't start Cal B until after the CLEP tests. And CLEP anything you can! (or get AP credit, or what ever gets him a few extra hours toward graduation).

Resign yourself to the fact that 12 hours is full time, and in all likelihood will be all he can stand, not because of the academic content, but because of the sheer daunting task of organizing those classes and the time to study for them. Homework won't be like high school.
Remember that old adage of "2 hours of work at home for each hour of class time." And if he doesn't have 30 hours at the end of two semesters, he's still a freshman, with all the disadvantages freshmen have with registration. So, start taking CLEP credit in 11th grade.

Quit letting them look at far away schools. If he's not going to be able to be both self sufficient AND able to handle classes AND dorm life, that's okay. Start looking close to home. There's no real reason for someone to have to deal with ALL those major transitions the same day!

And applying to colleges is very stressful, and not something he will ever need to do as an adult. Don't let them tell you it's like applying for a job. It's not. If you want to develop those skills, have him apply for jobs. Bring home typical applications and practice filling them out at home. Looking at the person he turns the app. in to. Even putting on the
tie and going to the interview, if called. It doesn't matter if he doesn't
need a job. Most folks under 18 just plain can't get a job, especially if you are any where near a college campus. And if he does by some fluke get an offer, "No thanks," is a fine answer.

There are TONS of scholarships for transfer students who have gotten their assoc. degree at a community college.

AND about those college entrance tests (the PSAT, SAT and ACT). Take as
soon as you can, and GET ACCOMMODATIONS. You have more ability to do this the younger he is. Those organizations are NOT subject to IDEA, not required to to help your child do his best, and don't care a whit about your child. They only have to comply with the ADA. which means they only need to give him "reasonable" accommodations, that will allow him to do AVERAGE on the test. The most common, easy to get accommodation is extra time. Get it.
Make his high school teachers routinely give it to him, even if he doesn't need it. It can make the difference between a 32 and a 33 on the ACT, which to us would have meant $2000 more scholarship money, every semester! But if he's taken the test already without accommodations, and made average or better, then it's WAY too late to ask for accommodations.

Transportation. If it is appropriate in your area, or the area of the campus, how to use the bus system. City buses and having correct change is NOTHING like riding on the school bus. Many are not ready to drive until later in life. In those cases, if he's not going to be at home, or you don't want to spend the rest of your life is as a chauffeur, then public transport (including how to call for a taxi, or use a car-pooling system) should go to the top of your list, now.

Driving. Some will never drive (see above). Most are not ready to drive at 16. Many will think they aren't ready at 18. But a fair number, who aren't even close to being ready at 15 may be by 19. Learners permits are good for
4 years in most states, and do not count as being a driver on most insurance companies. And I firmly believe in self-fulfilling prophecies. Get him his learner's permit, go on as if you are fully as confident he will eventually drive as you are that he will go to college.. Even you don't want him to drive. And when he is in the car, have him sit up front and pay attention.
Have the driver point out things to look for, potential problems, good following distance. If you have an older sibling being taught to drive, have the younger one there in the car, too.

He is NOT required to graduate in 4 years. Talk to the people in charge.
Arrange a five year high school plan (include making some classes like Home Ec and Consumer Ed, or whatever the modern equivalent, required). Give him that extra year to mature and get a good handle on those organization and self-sufficiency skills. I usually advise folks to repeat 8th grade, that's often much easier than stretching out high school, However, if you can arrange a 5 year high school plan that goes for half days, leaving him to dual enroll at the community college for one class, that would be unbelievably helpful.

Saturday, February 13, 2010

First day of 9 days of school vacation....

Okay, if you are a parent you will definitely sympathize with this blog. For the next 9 days the kids are off from school. Ugh... And as most of our vacations go, this one started off with a bang. Or should I say scream! Only this time it wasn't the kids that were screaming it was me. Yup. I woke up hearing the boys talking downstairs and carefully turned my head to look at the clock (I say carefully because I am usually very sore in the mornings and stiff). The clock read 7:03. OMG!!! 7:03, Justin missed his bus, S$%T!!!!

Yup, that's how my morning started. I jumped out of bed so fast and made it halfway to the closet, tripping over my pillow and slippers before I realized, its SATURDAY!!!!
I just love vacations. The unstructured, chaotic, days. The LOOOONNNNGGGG Days! The, mom, I'm bored, days. Try as I might, I can never seem to find enough things to schedule or plan that will occupy both a 10 year old AND a 15 year old for every minute of every day.

Well, there's Percy Jackson this week. That's one day for a couple of hours. Today we had Karate and now Justin is snowboarding so that's another day. Tomorrow the boys go with their dad, and knowing him, that's a few hours. Then, I THINK, that they are going to be spending next Saturday night with their dad, but that could mean afternoon Saturday until morning Sunday so I don't know if that really counts as two more days down or not. SO, that still leaves 4 more days to plan.

And hopefully I will remember and NOT set my alarm clock for 5:30.

Wednesday, February 10, 2010

One Single Diagnosis for Autism? New DSM Criteria

It has come to my attention today that the American Psychiatric Association plans to change the autism diagnostic categories in the new version of the DSM. In particular, they are planning on removing the categories of Asperger Syndrome and Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS)from the DSM and changing the category of Autism to be more broad. You can visit the following link to the Autism Speaks blog to view the details: Autism Speaks Official Blog

I am not completely sure how I feel about this change, being that I have one child diagnosed with Asperger Syndrome and one with PDD-NOS. On the one hand, I have always just considered my children to be Autistic, regardless of their actual label so the change would not necessarily change how I view my children. If anything, it would stop some people who only see children who are diagnosed with Autism as being truly autistic from telling me that my children are not Autistic and therefor shouldn't be included in funding for services. I can't tell you how many times I have had someone accuse me of using up their child's funds for my non-autistic children.

So this change would actually put an end to MOST of that argument. I say MOST because no matter what the label there will still always be people out there who feel their children are more entitled to services than mine because their children are "more" autistic than mine. It is sad, but unfortunately how some people think.

This change would also put an end to insurance companies or schools telling us that we do not qualify for services like OT or Speech or ABA because our children are not diagnosed with Autism. That could be a good change for many people.

On the other hand, the one that is skeptical and see's conspiracy behind any change like this, fears what this will actually mean for the autism community as a whole. As most of you know, with every passing year, the percentage of children with autism has increased. Just his past year the numbers jumped from 1 in 150 a year ago to 1 in 115 now. That is a HUGE increase. And this increase is leaving insurance companies, schools, the government and the CDC scrambling and shaking in their boots. More and more people are looking at environmental causes for this epidemic that can no longer be explained by better diagnosis. One of those causes, some believe, could be the vaccines our children get but that the CDC has long denied could be a contributing factor.

In my skeptical and conspiracy riddled mind I wonder how much of this change that is "hidden" behind the greater good of our children is really nothing more than an attempt by the Medical Community to "lower" the rate of Autism so that they can then turn around and say "See? If it was the vaccines (or other environmental cause) then the rates would not have gone down?"

It has been my experience, with my own children, that doctors are hesitant to diagnose a child with Autism but less hesitant when they have PDD-NOS or Asperger's to fall back on. Now, this is just my opinion and as I said at the beginning, to me it is ALL Autism and having the diagnosis of Aspergers or PDD-NOS has still gotten us the label of Autism in the schools since they do not distinguish. But it is my fear that with only the diagnosis of Autism many doctors will be reluctant to diagnosis a child with Autism if they do not meet the original criteria that the Autism diagnosis had, regardless of any changes in the DSM.

We all know that Autism is a Spectrum disorder and that there are many differences among every child with Autism. That does not mean that doctors always agree and I remember in the beginning when I had doctors tell me that they were not comfortable with diagnosing my child on the Autism Spectrum because they did not meet all the criteria. It wasnt until much later that we finally received a diagnosis of PDD-NOS. So how many children will be left undiagnosed if this change takes place? And how will the Medical Community use the lower rate (which will undoubtably happen) to reduce our access to funds for research into why there are so many children on the Spectrum?

So I really am torn and not sure how I feel? I am not saying this is a good thing or a bad thing. I do not really know how I feel and I admit that I have a habit of looking at the negative side of things but that thinking has helped me many times in the past when I felt something was going on that should not be and I have almost ALWAYS been right when it comes to my own children. It just took digging a little deeper to find out the truth and when I have been wrong, I admitted I was wrong, but when I have been right I have been able to stop abuse and my children's rights from being ignored. So all I am suggesting is that maybe a little more digging is in order?

Again, this is all just my opinion and I know that many may not agree with me but I would really be interested in all of your thoughts? How do you feel about the change?

Monday, February 8, 2010

Have not Forgotten...

I just wanted everyone to know that I have not forgotten about my blog. I have been having some trouble with my arm and have not been able to do any lengthy typing. I just had a cortisone shot today so hopefully in a couple of days I will be back to blogging. Stay tuned!

Friday, February 5, 2010

2010 Walk Now for Autism Speaks - Please Join Us

Please help our team raise money for Autism Speaks. You can support us in three ways:

1. Join our team: Sign up as a walker and help us raise money. All Walkers will get a team T-shirt. Just click on the picture above.
2. Donate Money: Click on the picture above and then click on the donate button and donate online or print out the form to mail in your donation. You can also give your cash donation to me.
3. Donate items for our Annual Fundraiser tagsale: This is our biggest fundraiser for this annual event. Any items that you can donate that are clean, and in great condition would be greatly appreciated. Also, any supplies (tables, clothing racks, New Plain T-shirts etc) would be greatly appreciated as well.

1 out of every 110 Children are diagnosed with Autism. Not only do we need more research into why so many children are autistic but we need help getting laws passed to help the families of all of these children and to protect the rights of these children. We need more services to help the families of these children and we need help supporting the initiatives of those who want to help. All of this takes money. Please help support Autism Speaks by donating your time, money or items today. I will post updates as the walk date gets closer.

Thursday, February 4, 2010

Out of the Mouths of Babes Part 2 (for my mom)

Okay, so yesterday I posted a story that Justin wrote for his Grandpa when he was 10 years old. This year, also at 10 years old, Tyler wrote a story about his Grandma that I would like to share with you. This story had us both in stitches. Please note that BOTH of my children talk about how wonderful their grandparent's cooking is. Do you think they are trying to tell me something???

Here it is exactly as written. Love you, Mom!:

Everyone knows all your parents are responsible for your birth, but grandmas are the best. They cook most of your delicious holiday dinners, visit everyone else's birthdays, and even make sure to stay fit! But, my grandmother does this and more, read to find exactly what makes her so special.

Have you ever heard of a better "Grandma's house" than this? My Grandma's house is the best, and I'm sure of it. Just like my street, Grandma has a big cul-de-sac. A cul-de-sac is the end of a street, if your street has an end to it. Not only are cul-de-sacs a great place to turn around, but they are also a perfect place to ride your bike. I love to ride my bike around Grandma's cul-de-sac when it's a nice day out. After riding my bike outside for awhile, its time to head inside to have fun playing baseball in the fields, or even pick up a tennis racket and start playing best out of 5. The Wii Fit is another great solution for exercise. All you have to do to have some fun is turn on the Wii, make your mii (character), or choose to be a guest and pick one, then you choose your favorite game. I remember a time when I was sitting on the floor and cuddling next to one of my Grandma's cats. I heard the cat purring loudly as I stroked her soft back. It was fun watching the cat paw at my hand when I rubbed her stomach. I can only do this at Grandma's house. Once again, my Grandma's house is the best!

On Thanksgiving we traveled to my Grandma's house. When we got to Grandmas the food wasn't ready yet so we played games. Although, before we knew it the food was ready. My Grandma's turkey is already sliced and ready to eat. I like the white meat, even though it's not great. Just stick a little homemade gravy on it, and it's ready to eat. On the table I spotted my Grandma's favorite red jello whipped cream cake filled with fruit. I remember when I ate my Grandma's cake. It had jello, whipped cream, and it was filled with delicious fruit. I loved it and wished I could have more. And to end our delicious Thanksgiving feast, my Grandma served a delicious cinnamon apple pie with a lattice top crust.

Spending holidays with Grandma is the most wonderful activity ever! When it's some one's birthday, Grandma always comes to watch us open presents and play fun games. I love getting a hug from my favorite family member. On fourth of July we go to Grandma's house and light sparklers and fireworks. We stand on the long, single, blacktop driveway with our sparklers waiting for the time to come. Suddenly it's time! We put the sparklers away and get ready for the highlight of the night - the fireworks show. My brother and cousin went to the garage to get fireworks. After placing the fireworks neatly in the cul-de-sac, they light them up. We all wait silently as the fire gets to the bottom. Without warning - SCREECH- the whole fuse is burnt and the neon sparks fly off to the distance. Meanwhile, from another firework, sparks like flares shoot out at us as we try to dodge the cylinder dragons. I laugh every time my brother or cousin gets hit by the fire breaths, and Grandma laughs too! I don't think I'll ever forget my 2009 Thanksgiving. It was dinner time and I was starving. Grandma called me downstairs for dinner. When I walked into the dining room I saw tons of delicious foods. Mom told me that three of the foods had nuts. So they moved the three foods as far away from me as possible. It was a very funny moment, though I longed to try the cashew bread. (Remember I am allergic to nuts). Spending the holidays with Grandma is truly a fun time!

This proves that Grandmas are the best and I'm sure mine is in the top three! With her fun house, fantastic food, and spectacular holiday celebrations I'm sure you'd think so too. I'm sure my Grandma would be happy to take visitors.

Wednesday, February 3, 2010

Out of the Mouths of Babes Part 1 (In Honor of My Dad)

In Honor of my Dad who's birthday is today I would like to share with you a story that my older son, Justin, wrote about him when he was 10. Stay tuned tomorrow for Out of the Mouths of Babes Part 2 (a story that Tyler wrote about my mom). Notice how I don't get a story. Hmmm..

Anyway, here you go Dad. HAPPY BIRTHDAY!!!!! This story is exactly as he wrote it!

It's a warm summer day and the birds are singing and the smell of life and steak is in the air. What, steak? Yes, on the edge of the forest is a party that has a master chef as a host. Grandpa is holding one of his famous barbecues. Grandpa and his friend down the street are working to have the best barbecue ever. Grandpa as you can probably guess is cooking steak and other kinds of meat on the grill. His friend is a bartender and man can she make the best smoothies and milkshakes. Everyone is having fun except me. I was having fun until the bartender's daughter started jumping on top of me when I was on the hammock or when I was being chased by my little cousin's, Carly, Linsy and Alease. Besides that everyone was having the time of their life.

At the beginning of every perfect party, my Grandpa stands at the door and greets every single one of the guests even before they put one foot in the house. Before the guests even get to the house my grandpa is busy getting ready for the party. I hardly get to see him before hand because he's busy running around the house and setting everything up. The only thing he usually says during that time is "can someone help me set everything up?" My grandpa is a happy, funny person. He smiles all the time and says nice things to me.

After everyone is at the party grandpa starts up the grill and starts cooking my favorite kind of meat, steak! After he puts the steak on the grill the air starts to smell like steak. I can see smoke floating up out of the grill. He knows exactly when to spray the fire and how much because the fires are getting too high. Right before he sprays the fire you can usually hear him say "wow, these flames are getting pretty high!"

While the steak is cooking my grandpa is usually making paella. Before my grandpa is able to make the paella he must first shop for the ingredients at Stop & Shop. The ingredients he needs are sausages, rice, shrimp, rare spices and chicken. While he's shopping you can hear him saying, "I wonder how many people will come for dinner?" When he gets back home he takes out his cookbook and starts making paella. Everybody starts asking "When will the paella be ready?" When the paella is done everyone is happy and anxious to have a bite because it smells and looks good.

My favorite part of the barbecue is flambe! First he mixes some rum and brown sugar into a mixture that looks like soy sauce. When he puts in the bananas they almost instantly turn brown. Then he sets it all on fire! While it is on fire he calls "come on and watch the flames!" After it's done he takes out the ice cream and everyone has this tasty desert.

After the party the guests either head home or help clean up. We are mostly there for another hour cleaning up. When we leave I feel both happy and sad at the same time because it was a great party but I didn't want to leave grandpa the master of hosts, the maker of flambe, cooker of steak and the king of paella. Grandpa really is the best cook!

Tuesday, February 2, 2010

New Haircut, New outlook

So today I got my hair cut. No new style or anything, just a retouch on my color and a trim, so why should I walk out of there in such a different frame of mind than when I walked in?

This morning was just like any other morning. I woke up, and got the boys up and dressed and ready for school. I ran around like a chicken with my head chopped off trying to get them and myself ready to go and by the time I was ready to get in the car I was already ready to turn around and get back under the covers and go to bed.

I didn't bother doing anything with my hair. Why bother? It was just going to get washed, colored and cut anyway? So when I looked in the mirror as I was walking out the door I saw the same boring, drab me which pretty much describes my life and the way I have been feeling about it lately.

I am so ready for a little non-kid, non-autism, non-stress related excitement in my life. Just something, ANYTHING, to make me feel special again. To make me feel like a beautiful, happy, woman again.

So when I walked into the salon this morning I wasn't really expecting much. And then Wayne worked his magic, again. Wayne, my hair savior and mood rescuer. Last night, I had posted a message on Facebook that I really needed someone to spoil and pamper me for just one night, and Wayne came to the rescue. His fingers and his hands are like magic and as usual he transformed my drab, gray, lifeless hair into a work of art. Okay, maybe I wont go that far, but I definitely walked out of there much lighter and happier than when I walked in.

Just having my hair washed, those fingers massaging the shampoo into my scalp, was enough to melt away the tension and the stress that seems to have been suffocating me lately. Come on, you know exactly what I mean. How many of us wish that we could take our hair stylists home with us just to shampoo us every morning? And then there was the styling. Something that I will never, in a million years, be able to duplicate myself no matter how easy he makes it look or tells me it is. Just looking in the mirror at my temporary transformation was enough to put a smile on my face. It made all the little insignificant problems that seemed so HUGE this morning, just disappear.

How is it that a simple haircut can do that? I don't know about you, but I think I need to schedule those haircuts just a little bit more. Anyone feeling down and stressed out should take my word for it. Go get a real full blown haircut. Not one of those, wet you down with a spray bottle, haircuts, but one of those full service, massage the heck out of your scalp wash and haircuts. Even if the change is temporary, it will give you just enough energy and motivation to get through the next day, and in our hectic lives, even one day is a treasure worth holding on to.

Monday, February 1, 2010

A simple Blood test could have prevented so much...

*Please NOTE: I am not a physician or a medical professional in any way and the information contained here is simply my interpretation of what my child's doctor explained to me today. Any questions or concerns you have about this post I would recommend you discuss with your own physician.

So about a month ago I brought both my children in for some bloodwork that was ordered by their psychiatrist. It was a genetic blood test that looks at DNA typing as a way to prevent adverse drug reactions and it was something that she just recently started ordering for her patients, especially those who seem to be not responding well to medication. This blood work tests an individual's ability to metabolize drugs using certain enzymes that we possess.

Why is this important? Through scientific research it has been shown that the safety of many drugs depends on the rate of drug metabolism accomplished by a certain family of enzymes. If you are deficient in these enzymes, or if they are overactive, and a medication that you are taking is dependent on these enzymes in order to be metabolized, then you can experience adverse reactions to this medication. There are other medications that inhibit these enzymes and what that means is if you are taking one of these medications and at the same time you are taking another medication that needs this enzyme to metabolize it then you are decreasing the effectiveness of that medication, or exposing yourself to a higher risk of an adverse reaction.

In layman's terms, say your child is taking Risperdal or Abilify, both of which depend on the enzyme CYP2D6 to metabolize it but your child has a deficiency in this enzyme. Then those side effects that are listed for that medication are much more likely to occur for your child than any one else who does NOT have that deficiency. This medication is also LESS likely to be effective for your child. Now say, on top of that, he is taking Benedryl which also relies on CYP2D6 for metabolizing. Now the effects are even worse.

If we take the same child on Risperdal but with NO deficiency in CYP2D6 but then add in something like the antidepressant Amitryptiline (Elavil) which acts as an inhibitor of CYP2D6 then your child is still at risk for those side effects from the Risperdal because the Elavil is inhibiting the enzyme which is making it less able to metabolize that medication. Does this make sense?

Now, for my children, not only were they deficient in one of these enzymes (so much so that it is completely inactive in their systems) but they were deficient in TWO of them. Some medications can metabolize on more than one enzyme so if you are deficient in one but not the other one that it can metabolize on then you have a higher chance of being okay on this medication. The two that my children are deficient in are the ones that most medications in the psychotropic medication list needs (CYP2D6 and CYP2C19)and this explains why we have been having such a hard time with medications.

Not only psychotropic medications are effected. There are many medications (analgesics like Advil and Celebrex, antihistimines like Benedryl or Zyrtec, Antidepressants, anticonvulsants, stimulants and ADHD medications, etc) that are also dependent on these enzymes for metabolizing. I cant tell you how many medications I have taken that have either made me SO violently ill that I ended up in the ER or so irritable or moody that I felt like a completely different person.

Justin was on a medication that combined with his Risperdal (which we now know he should not have been on) caused him to be suicidal. Tyler was on Singular and after only one day became suicidal. We had tried him on two different anti-depressants and he was hallucinating and was so hyper that he didn't sleep for 36 hours straight. Now he is on Allegra and just recently started becoming suicidal again and we had no idea why this kept happening.

We are now in the process of weaning Justin off of Abilify (another medication that he should never have been put on) and because of the CYP2D6 deficiency we have to go extremely slow because he is much more prone to the serious Tardive Dyskinesia side effect that some children experience when coming off of this medication than other children are. But this also explains why when we tried to increase this medication his irritability increased dramatically.

All of this could have been avoided with this simple bloodtest and I encourage everyone who has a child who is either on, or you are considering putting them on, any psychiatric medications to have your doctor order this bloodtest. Because both of my children have this deficiency it means that either their father or I also have this deficiency. I am betting that it is me because I have a lot of problems with medications. It seems that there are very few medications that I can take that dont have a negative effect on me in one form or another which is why my fibromyalgia is so impossible to treat. If you find yourself being oversensitive to medications this might be something you might want to look into for yourself.

Another thing, it is also possible to have TOO much of this enzyme which means that they require a lower dose of a medication than most other people. The danger with this is that if they are given a normal dose for their age/weight they could possibly overdose on the medication.

One more thing, there is a breast cancer medication out there that is getting ALOT of publicity because of this very issue and they have found out that patients who have this deficiency in CYP2D6 should NOT take the medication Tamoxifen especially in conjunction with any of the antidepressants that rely on CYP2D6. This combination has been seen to not only reduce the effectiveness of Tamoxifen but has also been shown to possibly increase your chance of recurrence of the cancer. So if you know anyone with Breast Cancer or receiving Tamoxifen to prevent Breast Cancer (usually if they have a high family risk) then please warn them about this and suggest that they have DNA typing done to test these enzymes.

I hope you found this helpful. Please leave me a comment and let me know.