It's not always good.

Last week My husband and I tried taking our son and daughter to the doctors. I say tried because we didn't actually end up getting to see the Doctor that day.

I was dreading having to take him. Matthew has been a little more on edge lately than usual. Lyster (our doctors office on post) didn't have any appointments available so we went to a walk in clinic off post. After signing the kids in and sitting for a while I walked up and asked the front desk how long the wait was. She told me it could be an hour or MORE! 

Matthew had already started running around  and Steven and I were doing our best to keep him under control and watch Analise too. (all I can say is thank god Steven was able to come with me)

Every time I had to pick Matthew up and take him back to our seats he would scream and cry. I could tell the some of the others in the waiting room were getting irritated with us, and him.

I'd like to think that it's somewhat obvious that there is SOMETHING different about Matthew that people can see. That they can tell he's not just throwing tantrums because he's a "brat" or because he's undisciplined. The fact of the matter is, is that usually, they can't tell.. and there's always going to be somebody who says something under their breath, whispers about you to whoever they're with, or for some reason, thinks that it's okay to actually say something directly to you.


That day in the doctors office I ran into one of those people. As I was up at the front desk turning in some paperwork I had filled out for the kids to be seen, Matthew came running in and when Steven came to pick him up and take him back to our seats he started to cry and scream. A man walked in and said, "some body's having a bad day." then sat down next to a woman in the waiting room who replied, "somebody needs to get their little ass beat."

I felt my face turn red and the thought of ignoring her left my mind as quickly as it came. I turned around and snapped back at her, "Actually, no he doesn't, but thanks for the advice (sarcastically of course).. My son has autism."  I turned around and walked back to my husband who was sitting with Matthew and our daughter Analise. I was trying to fight back the emotions that I was feeling and continue to sit and wait, but when Matthew continued to run around I couldn't just sit there anymore. I wanted to leave, and I could tell my husband did too.. So we got up and left Screaming child in one hand, car keys in the other.

On the way back to our house I couldn't help but think of all the things I wish I'd said. I wish I would have told her that i was going to beat her ass if she said one more word about my son, I wish I could have told her how ignorant she was or how rude it was in general for her to say anything like that loud enough for any parent to hear whether their child has autism or not.  I think it's safe to say that I just felt as though what I did say wasn't at all sufficient. Never the less, I'm glad I said SOMETHING and I seriously hope she felt awful, and at the least, that she earned dirty looks from each and every other person in that waiting room.

I just wanted to use my story and this opportunity to share a poem with everyone and shed some light on the subject of Autism for those of you, like the woman in the waiting room, who aren't very educated on the subject. Maybe next time your sitting in a waiting room and a child starts to throw a tantrum, you'll think twice before judging them, and speaking your mind about them out loud.

Public Display of Autism
by Tina Moreland
If he falls to the floor, kicking and screaming, because there’s no chicken nuggets, it’s just his way of coping. Be patient, you’ll get your turn to order.

If she bumps her head and starts to hit herself in the face, don’t stare, it’s her frustration. Mom will handle it, she see’s it everyday.

If dad is cutting his child’s food, he’s not treating him like baby. He just doesn’t want his son to choke.

If she ignores your child on the playground, she’s not a brat. She’s just not good at social interaction. She would love to play with your child, she just doesn’t know how.

He may be to big to sit in the shopping cart, no, he’s not lazy. He wants to run around, but his mom needs to shop. She’s not up for chasing him today.

If she has to be carried out screaming, it’s probably because of a meltdown. Be helpful, open the door. Don’t just stare or whisper. No, it’s not because she didn’t get the toy she wanted. If it were only that simple.

Don’t talk to her like a child, unless she is one. Don’t yell, she’s not deaf. She may not talk, but she can understand.

No, it’s not bad parenting. Discipline won’t help.

This is autism, it’s his life. Don’t judge him, he’s not judging you.
http://www.autismepicenter.com/autism-poems.shtml

Fragile X Syndrome

Recently My husband and I found out that we are expecting another little baby Due August 8th of this year. Today while at my OB appointment, Because of My brother's Autism Spectrum diagnosis, and my own son's Autism diagnosis, A nurse recommended that I get tested for the Fragile X gene to see if I am a carrier. I opted to go ahead and do the testing, I will get the results back in 2 weeks or so. So now I'm chomping at the bit wondering if this is going to turn up positive or not. If I do happen to be a carrier, Then I would definitely get Matthew tested, and I could also get the Baby tested. I'm actually a little frustrated that nobody has tested him for this before? Well at least it's getting taken care of now!

 While looking online and reading about Fragile X Syndrome, I found this site, and wanted to share. The paragraph I have copy and pasted below really stands out to me. In particular this sentence, "They are immensely friendly and amiable, thriving on contact and communication with others both one on one and in group situations. This is very different from autistic children, who often have immense difficulty in relating to others."

http://autism.lovetoknow.com/Autism_and_Fragile_X_Syndrome

This Paragraph stood out to me the most:

"Anyone familiar with the symptoms of autism can see why a child with Fragile X Syndrome might be thought to be autistic - the wide variety of symptoms easily falls within the characteristics of Fragile X. However, there is one major difference in the majority of males with Fragile X in terms of socialization. They are immensely friendly and amiable, thriving on contact and communication with others both one on one and in group situations. This is very different from autistic children, who often have immense difficulty in relating to others. According to the Child Development Institute, it has been shown that children with Fragile X who are integrated into "normalized" educational and social environments "achieve above the level that would have been predicted from measured IQ". Parents and educators are encouraged to test and evaluate children early to determine the best strategy for treatment.According to the National Fragile X Foundation, about 15-33% of the children with Fragile X Syndrome actually meet the criteria for Autism Spectrum Disorder according to the Childhood Autism Rating Scale (CARS). The wide variation comes partially due to changing diagnostic methods. Other genetic factors may account for the reason that some children with FXS have autism as well, but further study is underway to determine the factors."

Please if you have a child with Autism and they haven't been tested yet, Do yourself a favor and read up on Fragile X Syndrome, and get yourself and your child tested.  If not for anything more than a piece of mind. Believe me, I'll be making a post as soon as I find out whether or not I'm a carrier.

The signs of Fragile X Syndrome ::LINK::  This has some good information as well as a video. Check it out.

"Society says i'm Autistic, God says I'm perfect"

"Who do you think made  the first stone spear?” asks Temple Grandin. “That wasn’t the yakkity yaks sitting around the campfire. It was some Aspberger sitting in the back of a cave figuring out how to chip rocks into spearheads. Without some autistic traits you wouldn’t even have a recording device to record this conversation on.” - Temple Grandin

And that's exactly what my son, Matthew is in my eyes, PERFECT. I'm so proud of him! He is progressing daily with eating different foods, talking more.... It's as if he's more AWARE of what's going on around him. I am very happy right now :-)

Matthew goes to therapy 3 times a week and is currently getting Speech therapy OT therapy and ABA therapy! The ball is FINALLY rolling! woohoo! Things have been great. Of course, we have our moments.. but they are manageable and I have faith that we will get through this.

Well I wanted to give an update because I haven't posted an entry in so long! we've been busy busy!!!

be back soon!

When In Doubt

Thought this picture was perfect for my blog entry! This is some advice that I have definitely taken! haha


When Matthew first started taking the prescription along with the vitamins I so wanted to believe they were helping... So that's exactly what I did. I wasn't too sure if they were actually helping him because I know that I  wanted them to work so badly, that maybe I just saw what I wanted to see. However, Matthew got sick one morning.(this had nothing to do with his autism or the medicine/vitamins he was taking)  I decided NOT to give him the medicine or vitamins that particular morning because his stomach was upset. I continued the "break" of supplements up until 3 days ago. It was more obvious then that the supplements WERE working because within only 2 days Matt was throwing temper tantrums again at bed time, and was more easily agitated then when he was on the fluconazole along with the supplements.
  Since I've put him back on the Vitamins, these behaviors have once again gotten better. I now know that it wasn't just wishful thinking,  that this was, and is, truly working.

A MUST SEE Movie

I'm talking about the movie, Temple Grandin. Starring Claire Danes as Temple.

NY TIMES says, (click here to go directly to the movie review), "In her autobiography, “Thinking in Pictures: My Life With Autism,” Temple Grandin explains that she values “positive, measurable results more than emotion.” The HBO movie “Temple Grandin” honors its heroine’s priorities, stressing deeds over tearful setbacks and joyous breakthroughs."

My Husband and I rented the movie, Temple Grandin from redbox. Intrigued by it's description and more so, that the movie was about Temple's point of view and how her autism affected her life.

The movie certainly didn't disappoint. We were drawn in from the start of the movie straight through to the end. I couldn't help but feel emotionally tied to Temple. Thinking of my son every minute, realizing that much of what this movie depicts is true to life.

Everyone involved in this film did a wonderful job at demonstrating what I call, "sensory overload". A good example would be in the beginning of the movie, Temple is getting off of a plane. The weather is hot and humid. The plane's engine's still roaring, and Temple's in a different environment than what she is accustom to. As the movie goes on in this scene it shows you how Temple sees the world around her, quickly switching back to how we would see it, and then back again to Temple's point of view as she's processing every single thing that she sees.

This goes on through out the entire movie. I felt closer to Matthew understanding what he goes through on a daily basis. Even though his symptoms and problems aren't exactly the same as those of Temple Grandin, It gave me a good idea of how life is for him. Especially when he becomes overwhelmed by all that is going on around him.

I could try to write here on my blog, explaining and raving about this wonderful movie to all of you, but you truly should just see for yourself. I cannot express enough how much I love this movie and appreciate the story it tells. Claire Danes did an amazing job at portraying Temple. This movie won 7 EMMY AWARDS!!! yes, 7!

That's Temple Grandin on the left with Claire Danes

Here is Temple Grandin's Official Autism Website

Dr. Temple Grandin—world-famous animal scientist and autism self-advocate—has been included in the 2010 TIME 100, the magazine's annual list of the 100 most influential people in the world! 

 A little bit about Temple Grandin taken from the website linked above.

Temple Grandin, Ph.D., is the most accomplished and well-known adult with autism in the world. Now her fascinating life, with all its challenges and successes has been brought to the screen. HBO has produced the full-length film Temple Grandin, which premiered on Saturday, February 6th on HBO. She has been featured on NPR (National Public Radio), major television programs, such as the BBC special "The Woman Who Thinks Like a Cow", ABC's Primetime Live, The Today Show, Larry King Live, 48 Hours and 20/20, and has been written about in many national publications, such as Time magazine, People magazine, Forbes, U.S. News and World Report, and New York Times.. Among numerous other recognitions by media, Bravo Cable did a half-hour show on her life, and she was featured in the best-selling book, Anthropologist from Mars.
Dr. Grandin didn't talk until she was three and a half years old, communicating her frustration instead by screaming, peeping, and humming. In 1950, she was diagnosed with autism and her parents were told she should be institutionalized. She tells her story of "groping her way from the far side of darkness" in her book Emergence: Labeled Autistic, a book which stunned the world because, until its publication, most professionals and parents assumed that an autism diagnosis was virtually a death sentence to achievement or productivity in life.
Dr. Grandin has become a prominent author and speaker on the subject of autism because "I have read enough to know that there are still many parents, and yes, professionals too, who believe that 'once autistic, always autistic.' This dictum has meant sad and sorry lives for many children diagnosed, as I was in early life, as autistic. To these people, it is incomprehensible that the characteristics of autism can be modified and controlled. However, I feel strongly that I am living proof that they can" (from Emergence: Labeled Autistic).
Even though she was considered "weird" in her young school years, she eventually found a mentor, who recognized her interests and abilities. Dr. Grandin later developed her talents into a successful career as a livestock-handling equipment designer, one of very few in the world. She has now designed the facilities in which half the cattle are handled in the United States, consulting for firms such as Burger King, McDonald's, Swift, and others.
Dr. Grandin presently works as a Professor of Animal Science at Colorado State University. She also speaks around the world on both autism and cattle handling. At every Future Horizons conference on autism, the audience rates her presentation as 10+.
Dr. Grandin's current bestselling book on autism is The Way I See It: A Personal Look at Autism and Asperger's. She also authored Unwritten Rules of Social Relationships, Animals Make us Human, Animals in Translation, Thinking in Pictures, Emergence: Labeled Autistic and produced several DVDs. All books and DVD's available through Future Horizons.
Temple Grandin's work continues to inspire millions, drawing superlative reviews such as these:

-Dr. Tony Attwood, world renowned expert on autism spectrum disorders

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A Day At A Time

 Tuesday we went to Barnes & Noble where I found an awesome Organizer/planner called, "A Day At A Time" This has proven to be a very useful tool for keeping track of Matthew's Vitamins/dosage, His progress, appointments and important contacts like his doctor's phone number etc. 
This book is small enough where I can easily fit it inside of my purse and take it with me to doctors appointments, and there's even a section for notes where you can jot down questions to ask your child's Dr. so you won't forget (as we can become distracted when we're stretched in so many different directions, we are likely to forget a nagging question that's been on our mind for weeks!)

 I highly recommend getting this organizer if you have a child with autism. It makes it so much easier than the chaotic mess that can become our notebooks without any organizational direction.

You can find the notebook, "A Day At A Time"  at Barnes & Noble. (click on the title to go directly to the book on Barnes & Nobles website)

Author : Jen Merheb
Price: $14.95

 
 

A Blessing

Matthew went and saw a doctor on Tuesday who specializes in children with Autism. He has a child with Aspergers syndrome so he knows exactly what we're going through with Matt. I couldn't have been happier with our appointment that day. Everyone there was so understanding and eager to help. Come to find out the doctor and his wife are the directors of the clinic that I wanted Matthew to go to for speech, O.T and A.B.A therapy!

The doctor prescribed Matthew something called Fluconazole. "Definition of Diflucan (fluconazole): Diflucan® is an anti-fungal antibiotic that is prescribed to treat fungus infections in any part of the body. Diflucan® is often prescribed to treat fungal infections in people with weak immune systems. Diflucan® may be prescribed off-label for children with autism to help relieve their autism symptoms, based on the idea that autism symptoms may be related to fungus infections in children." 


The doctor informed me that his wife would be getting in contact with me to discuss Matthew's bloodwork (which was taken that day) and some supplements to put him on. She ended up coming into the room as we were getting ready to leave! 


After Matthew's blood work came back we discussed what type of supplements Matthew should be on. For now there are only a few, which i will name at the end of this post, but she said that she will be adding to the list as time goes on.. One step at a time! we want to see how Matthew reacts to these supplements first. 


Matthew will be going back to see the Dr. on the 30th of this month and I will be sure to blog about how it goes. I feel so completely blessed to have found such wonderful people who are truly dedicated to helping children with autism and aspergers. I could not have asked for anything more.. I'm very excited for what's to come!


     Matthews Vitamins

1. Childrens Multi Vitamin Capsule by Kirkman
2. ProBiotic - Ther-biotic complete powder from Klaire Labs
3. Nordic Naturals Pro Omega liquid
4. Magnesium Glycinate
5. Vitamin D liquid from pure encapsulations
6. Zinc Liquid by Kirkman
7. Melatonin 3mg