Saturday, April 14, 2007


Autism a word I never thought would be a part of my life but it has become a word that is said everyday , it is thought of almost every minute of the day, it is a word that sets my son a part from others, Autism a word that has forever changed our lives.

In 2005 I noticed that Mav was different he wasn’t talking what he did say was a repetitive tucka tucka sound, he played for hours alone, he had really bad tantrums over what I thought was nothing, he wasn’t responding to his name , he just wasn’t there he was off in his own little world. I thought there might be something wrong so I talked with family and friends and told them my concerns but they all passed it off as he’s a boy , boys do things and develop slower then girls. I wasn’t going to settle for an answer like that I knew deep in my mommy soul it wasn’t just being a boy it was something more. While surfing the net one night I came a cross Autism Awareness in the signature of a fellow scrapper on a message board and I also came across the word Autism on Ali Edwards blog after reading about Simon I wanted to know the signs of Autism since what Ali was writing sounded like the things Mav was doing so I searched it out on the net and there the signs were and Mav had almost all of them I cried could he really have Autism ? I vaguely remember hearing about Autism in High School when the real "Rain man" came to Hastings but Mav wasn’t like him so maybe it wasn’t Autism . I remember talking to Louis and other family members about Autism but they would have no part like I said before it was oh he’s a boy but Autism stuck with me I researched and reread again and again just so I knew what to say when it came time for his 2 year check with the DR. In November we had Mavs 2 year check everything was great he was healthy and then the DR asked if I had any concerns or questions which I usually don’t but this time I did that word Autism came out of my mouth it surprised the DR so I asked him could Mav have Autism? I went through the list I had in my head as much as I could remember of it since I was a ball of nerves that day and again I got no I don’t think it’s Autism he’s a boy and things are different with boys but since I was so concerned about it the DR wanted Mav to be evaluated. I called around to get us set up for evaluation, we were sent to see Marcy a speech therapist with the school system here. She did the evaluation and she too didn’t think it was autism but she was concerned about Mav’s speech delay so she sent us to Early On and that’s how we met Miss Dawn. We were suppose to see Miss Dawn in early DEC but since I was 8.5 months pregnant with Avery and having problems with the pregnancy we had to put it off till after she was born. In Late Jan we had our first visit with Dawn she did some evaluations on Mav and set up home visits to work on his speech and other issues. Dawn also wanted to set us up with more evaluations to determine whether it was Autism and unlike the rest she didn’t say he was just a boy and different she really knew what my concern was she understood I needed to know what was going on with Mav and she was going to help me get the answers. We were set up with a social worker Ellen from the school to do more testing related to Autism, an Occupational Therapist Jackie since Mav has a lot of sensory issues, another Speech therapist Kris, and a Psychologist Erin. All these women came to the house at the same time to do their testing and that day was one of the hardest days of my life. To have 4 complete strangers staring at you like you’re a monkey in the zoo and asking the same questions over and over again watching your sons every move and having him get so overwhelmed that he retreated to his room was a bit no a lot overwhelming for this momma. After they left I fell to my knees and cried I just didn’t know what to do or how to react to what had just happened what did they think, what were they talking about when they left, omg my house, what if they think it’s just me a bad mom and the what if's just kept running through my mind I will never forget that day. A few weeks later we had to go for more testing with Erin the psychologist Mav hated that she needed him to do things that he didn’t know how to do or just didn’t want to do so he threw himself on the floor and she gave up for that day the next week we had to go back for the same testing this time it was different she knew him a little better and got what she needed and the test was done thank goodness. Erin was the one who would determine whether Mav had Autism we had to wait a couple weeks to get the test results from Erin the wait sucked so much second guessing myself maybe I am a bad momma, maybe I did it wrong with him, maybe maybe maybe! During the couple weeks between testing and results we had another visit with Jackie the OT and we had our weekly home visits with Miss Dawn. Then wait was up in May Dawn and Erin came to the house sat with me on the sofa and explained to me the results. They told me something I had known for months now that my son Mavrick at the age of 2 became one of the 1 in 166 children (now 1in 150)to be diagnosed with Autism. On paper Mavrick is severely Autistic, in some areas he is delayed 2 years this was one of the hardest things to be told and is still hard to think and talk about. I cried my eyes out there on the sofa that day even though I knew I was going to hear those words it still was too hard our lives changed everything changed.. After being told mav has Autism I was told that he should attend school in the fall. what? He’s still a baby is all I could think and how was I going to send him to school what is he needs me and I’m not there I can’t , I won’t but I did. We had Mavs first IEP a couple weeks later where again we heard about the tests and the things that would be happening with school in the fall again I was very overwhelmed it’s hard to have 10 sets of eyes on you while hearing this again and as I sat there weeping I will never forget the words that the Ellen told Louis and I “He is still Mav Autism or no Autism he is still Mav.” I need those words and they help even on the emotional days which I still get I repeat those words and add a few to them. We had home visits weekly then twice a week during the summer with Dawn and Miss Laura these women did some great things to help both Mav and our family and we will forever be thankful for them even though at times they pushed till his breaking point and no momma wants to see it I now know why they did and I thank them!. In the fall of 2006 at the age of 2 mav started a special ed class for non school age children it was another hard day since he is still my baby but school has been great for Mav he is doing good he has made alot of progress this year.Mav has an awesome aid in class that he took too right away the first day named Marilyn he loves her I think he bonded so quickly with her not only because she is a sweet lady but because she could pass as a relative she has the look :)!He also sees Marcy twice a week and is starting to use more words which is awesome. He sees Jackie once a week and has made some good steps in his sensory stuff too. Mav loves school and I am glad that he is going, he is in good hands when he enters the door and momma isn't such a worry wart about school like she was in May of 06 lol.Things have been good with Mav he progresses and has some regression but with every regression it seems be take a giant leap forward which is worth it. He is an awesome child that I love more then words can express and I am blessed by him and his autism. You are probably thinking how can she be blessed by autism well let me tell you since Mav has been diagnosed life is now seen through a different set of eyes I don’t take the little things in life for granted anymore since those little things are what mean the most.3 of my favorite words are live, laugh, and love.Those affected by Autism will know why these are my favorite word but for those who are out there wondering why ... You need to Live- Live life to the fullest you can't dwell on the fact that your child has Autism. You need to Laugh and Smile- we do this all the time because of those little moments the smiles, the smooches,the giggles,and the Mavness. You need to Love- there is so much love in my heart for this child and the love that he gives me is amazing!
I know I am missing bits and pieces of our story but this will give you the idea of what we went through to get to where we are now and make you aware of Autism. There is no known cause or cure for Autism right now so please spread the word it’s time to solve the puzzle!!

6 comments:

mcewen said...

The are great logos and banners - a very talented team!

Much life you, I didn't imagine that autism would become something that I live and breathe. In some ways that club of autism mums is very exclusive, but at the same time, everyone is welcomed.
BEst wishes

Scrapthatpaper said...

Thanks for sharing your story with me! It has given so much more understanding of what Autism is and what you really go through on a regular basis!! It takes a very strong parent to continue on with this challenge you face!! As he grows he will only show you how proud you are to be his mom!!! Your strength amazes me girl!

aimee said...

Thanks for sharing your story. I pray that the puzzle will be solved for Mav's sake and for every family that Autism affects.

Marlene said...

Way to be persistant in getting Mav diagnosed. The earlier the better. I teach first grade at Dorr, and we have an A.I. classroom in our building. I have had many of these students in my classroom, and I loved every one of them. Mav is lucky he got a Mom who was such an advocate for him. Hang in there!

let's embellish! said...

Mandy hang in there! Awesome story about your son - did you read my called "miracles"? I have walked in your shoes. Autism is a small world when you consider how many of us have someone in our lives affected by it.

Briana Johnson said...

Mandy, wow, I have tears in my eyes reading this. I don't want to say I'm sorry because that just doesn't seem right because he is who he is and there's nothing wrong with that. I'm so proud of how you hung in there and kept at it to find out sooner rather than later and could begin therapy early. I know he's a wonderful, special fella and hugs to you!