Our First Fundraiser

fundraiser pic1We had our first Sophie's Promise Fundraiser on 4/28/12. It was an amazing night and went off without a hitch thanks to my awesome board members and family! The nerves didn't really hit me until that morning. It would be the first time I have ever spoken publicly in front of so many people. I have no problem talking on the radio with ease but in front of 350 people was another beast. I thought to myself how am I going to keep myself together about a subject that is so near and dear to my heart, my children. Its started out ok but it was short lived. I started my speech by thank my board members. These wonderful group of woman have served this foundation with nothing but heart and soul along with our 1 and only male board member my husband Joe. As soon as I got to the part about discussing Emme's diagnosis, I could feel my throat swell and the tears began to flow. The last thing I wanted to do but I am human and it happens. I think I cry a lot when I talk about my children not because I'm sad for them but that I love them so much it brings me to tears.

We had such an amazing turn out of people. 350 of our closest family and friends and even some new friends. The love in the room was palpable we all know we were there for an amazing cause.

I showed a short montage video call "what is the face of autism" and it was a video that was compiled about Sophie's life from birth to current age. We wanted people to know the stages that we had been through. There was immediate guilt as a parent, what didn't we do right , what could we have done better? Then there was the grief period. This period for me was the hardest and the most depressing. I don't think I ever wanted to get out of bed for at least a few months. I cried a lot, I barely left the house, I wore pajamas morning, noon and night and I barely brushed my hair. All I ever wanted to do was sleep and that's exactly what I did most days after getting her off to school. I would go right back to bed and cover my head under the blanket. It was like a bad dream that I wanted to wake up from. That lasted for at least 1 year.

Shortly there after I remember thinking to myself, what the hell are you doing? Momma Bear kicked in. I researched feverishly from the time I wook up to the time I went to bed. Somedays that was at 3 am. I read more books about autism in a few weeks than you could possibly imagine. I read up on supplements and which would be best for my child. I burned out pretty quickly from that. While I do do research almost daily I now limit my time on it.

Shortly after that stage came the final stage of acceptance, freedom, happiness! I am a worrior mom and I can DO THIS! And this is where we are today. We will never say never!

Dinner was really good but took way to long to be served imo ! The comedy show of out of the gutter was hilarious! It feels so great to smile and laugh sometime.

So here I am, everything has calmed down and I'm itching to start the planning for the next fundraiser!

The Ugly Side of Autism

There I said it! I said what every parent of a child with autism wants to say but in every way feels guilty about saying it. I know this because I've been there. In no way by saying this am I saying my children have an ugly side but their disorder certainly does.

Friday the 13th our hot water tank broke in the middle of the night pouring well over 50 gallons of water in my finished basement. My children's playroom was located down there. To say the least Sophie was not happy to come home and see that everything had changed! The carpeting and hardwood had to be pulled. All her toy cabinets are now junk along with her toys. I just don't know HOW to explain to her in a manner that she would comprehend, nor can she freely express to me her complete displeasure of what's going on. To boot the kids are now on April school vacation, this couldn't of happened at a worse time!

So now the symptoms of her disability are clearly showing. She is crying and not able to tell me why, she is hyper because she doesn't know how else to get her frustration out and her PICA has kicked in this week with full force due to the stress she is experiencing with all this change. As any parent with a child with autism knows CHANGE is not good. These kids thrive on sameness and schedules. Emme on the other hand is handling it a bit better. She doesn't seem to mind very much but has been a bit whiny.

People might wonder how this affects the parents, well I can tell you how it affects me. I haven't had a moment to myself during waking hours, not even to have some privacy in the bathroom. Forget trying to cook and clean, it's not happening. There are days that I spend in my pajamas all day long. There are countless days that I just throw in a ponytail and rarely ever put make up on. There are days when they go to school and all I want to do is spend the day in my bed under the covers. Of course I would love to have my appearance look perfect but hey this is my reality. I'm exhausted! Many times when I'm alone I find that I talk to myself and sulk, and to be honest ya know what ... I'm allowed. I'm human! It's those pity party days that I have with myself that allow me to pick myself up and say "Chris ... you have no time for this" there's therapies to be done, children to care for, IEP meetings to attend, research and advocating to be done!

So the next time you see a mom, or dad for that matter, struggling with the ugly side of autism, reach out. See if there's anything you might be able to do for them just to give them a small break. It could be taking the kids out to play or making them a simple dinner or just giving them a simple hug. No words need to be exchanged we just need to feel that people "get" our struggles.

Sophies Docs

I wanted to let parents know of some amazing health care providers that we have met along the way.  I am not being paid to advertise for these professionals ... this is just one grateful parent's perspective on how they have positively impacted our lives.  They were referred to us and we are just passing along this valuable information.  We are so thankful we found them.

Dr Dunton is Sophia’s chiropractor. We discovered him while talking to a few moms who host the local radio show Special Storm Radio. At first I wasn’t really sure how chiropractic care could help my daughter but I figured I'd give it a try. Well Dr Dunton started seeing Sophia three times a week. Within the first few weeks we started to notice her sleep was improving along with some increased speech. Her anxiety level had also lowered. We could clearly see how her weekly visits were helping out with both mind and body. Although new places and new touch can alarm some kids with autism, this did not happen with her. She looks forward to her weekly visits with "Dr D."!

His spouse JodiAnn Dunton is also just as amazing. She specializes in Reiki and massage. I look forward to my visits with her as often as possible, because after all parents need to be taken care of too! So if you want that “gentle touch” for either yourself or your child, these are the providers for you. For more information on these providers please check our resources tab.

Dr. Wolff is a neurologist at Boston Children’s Hospital. After our initial consult we knew we were hooked. I can't stress enough the importance of finding a Dr. that will LISTEN, and he did just that. He listened to all our concerns without interrupting or making us feel rushed. He validated our concerns without thinking we were crazy. He saw my child not as a number but as the amazing little girl she is. If you are looking for a great neurologist and staff look no more. Please see his info also under our resources tab.

Dr Yuan is a gastroenterologist at Mass General Hospital. If I could use one word to describe him it would be A-M-A-Z-I-N-G! We only discovered him when Melissa from Special Storm heard me talking about all the issues Sophia was having with her belly. She promised that she had the right Dr. for us, and boy was she right! I was blown away after the first visit. Our appointment was well over an hour. In this time he listened carefully about all the issues that Sophia has been facing throughout the years. We talked extensively about research, vitamin supplements, allergies, constipation, PICA and the GFCF diet. He took a lot of time to really look at her, “see her” and make that connection. By the end of the visit she was listening to his heart beat and giving him well deserved hugs. I’ve come to realize doctors like Dr. Yuan are worth more than their weight in gold. We finally got our PICA diagnosis that we had been searching for, a process that took well over 4 years! He ran a huge panel of blood tests to check for food and other allergies, something that a local Dr. wouldn’t even consider because she wasn’t showing outward signs of allergy such as hives or swelling. So we left his office that day with the satisfaction that we were finally getting some much needed answers. Sophia will continue to see Dr .Yuan regularly and we look forward to it. Dr. Yuan’s information can also be found on our resources page.

Sadness Resignation

Its been a very eventful week in the Aguiar household. Emily’s teacher resigned her position. To say it was heartbreaking to us would be an understatement. She has made such an imprint on both our hearts and our children. She helped to build the very foundation of my children’s education. She always had an open ear and large heart. When ever I was struggling with an issue with the girls she was always there to tell me this to shall pass, and it always did. While she takes on a new endeavor we wish her nothing but love and happiness! While my children will no longer see her in the school setting she will continue to be a huge part of our private lives. We love you Miss Linda!

On another note, I heard from a great local mom named Michelle. She had heard about the fundraiser and called me to find out a little more about the cause. She too has a child on the spectrum who is in his teens now. We spoke for quite sometime about the struggles we face each and everyday not only with the children and all their quirks but battles to get our children’s therapeutic and educational services. She gave me some insight into the future. She told me to continue to fight the good fight and hang on because things DO get better. I often wonder of what the future will bring and I just LOVE hearing from fellow warriors moms who have been there done that and almost all of them say the same thing…it gets better! So thank you Michelle for making my day! See you April 28th.