Welcome to Let's Cure Autism!
Our Story!
Well lets see, hmm were to begin? I was born in Berwyn, IL and was raised in Lombard, IL most of my life. I have Learning disabilities as well as ADD. I have struggled my whole life with these disabilities. I am told I am a good mother and wife. My husband was born in Peoria,IL and raised his whole life there. He has Bipolar and Post Traumatic Stress Disorder. He is a great father and a great husband. It has been a rocky ride for us. Yet, we continue to love each other and stick together as a team. This is our families story.
First there is our intelligent son, Brett, who was born to us on Dec. 14 of 1995. He was a challenging infant and continues to keep us on our toes today at the age of 12. He is very intelligent and has a great sense of humor. He is a master at video games. He is an honor roll student and has succeded at everything he tries. He is in the preteen stage currently and well if your a parent then I don't need to tell you what that means.
Second in line is our sweet daughter, Lauren, who was born to us on July 2nd, 1999. She was a fairly easy infant and a picky eater as a toddler. To this day she prefers healthier food. She , like her Mother , suffers from Learning disabilities. She tries 200% at everything she does and is truly an amazing child. She is currently in Special Olympics basketball and doing quite well at it. UPDATE: Her team went to IL State Championship and she won MVP in her first game. Both her team and the older team won the gold metal for thier division. Way to Go Little Giants! You can read about it here.
Which brings us to Arek, the inspiration for this website. He was born to us on Dec. 16th, 2003. A remarkably quiet baby, he barely ever cried or asked for anything. He slept through the night at 1 1/2 months. He is a very happy little guy to this day. He was diagnosed with Autism at age 18 months His story as well as the effects of living with Autism on our family is discussed below.
Next in line is our sweet daughter Alissa. She was born to us on May 13th, 2005. Alissa was also a very good baby, which scared us at first but we immediately saw her development being more towards the plus side of the scale. She walked, talked, pointed etc...earlier than Arek. She had a blast showing off to Arek's Therapists. She is currently 2.5 and raising heck like all 2 yr olds do, what a sweetheart she is.
Last but not least is Amanda. She was born to us on August 15th, 2006 and she was a blessing as well. She was the most difficult pregnancy for us and had almost came out early a few times. She was the quietest baby of them all and slept through the night by 1 month old. She scared us at first but seems to be developing normally so far. She is a slow walker, like Arek was. She started walking on Easter 2008. She says some words, is on a sippy cup, very alert and a delight to be around just like her siblings. She is the most clingy of our 5 children. She doesn't like strangers, not even her grandparents, aunts and uncles.
Our Story
It was when Arek reached the age of 6 months that we knew something was different about him. By age one we were sure something was not right. We were concerned and talked with his doctor who assured us not to worry. Well after a few more months he still didn't walk, he wasn't saying a word (barely a gaa or goo) and developmentally he seemed to go backwards rather than forward. We had researched quite a bit and were fairly certain it was Autism that Arek had. Panic was beginning to set in and realization that our little blessing might not ever have a so-called "normal" life, may never talk, might not potty train for years or even longer, may require expensive therapy for the rest of his life etc... We went back to our doctor and discussed Autism and all the information we had gathered, she tried to tell us that we shouldn't worry, but we were wiser than that and persisted he be evaluated by Early Intervention and she finally complied. Our journey into Autism began. After a couple of weeks we were contacted by E. I. and scheduled a time for some Therapists to come out and evaluate him. It didn't take them long at all to determine he needed services. They scheduled him for an evaluation at Illinois Masonic in Chicago specializing in child development. We set up times for him to receive Speech, Occupational, and Developmental Therapy 2 times each week. He did not show much interest at first. Well, we went to our diagnostic appointment which consisted of a team of Therapists in a variety of specialties, a Psychologist and a Medical Doctor. They talked with us for a few moments while Arek played by the Therapists. After that, they observed him and attempted to get him to participate in their tests (play). They then asked us a few more questions and we asked them a few being prepared for what they were going to tell us. So, we patiently waited with Arek for what seemed like an eternity for the team to collaborate and give us their decision. Autism was the diagnosis as we had suspected. At 18 months, our boy was diagnosed with Autism. Well, he continued to get the therapy a total of six hours a week in the home for another 3 to 4 months and was making very little progress. Our Speech Therapist worked out of a place called Communication Clubhouse and recommended we attempt to get his services switched to there. After our early intervention plan (eip) meeting we had convinced our Case Worker to let him try it out and see if his progress improved. Most of the services children receive with Early Intervention are in the home and it is rather costly. He was about to go to Group Therapy which was even more costly. Fortunately, the insurance we had at the time covered everything. We were able to give him the services he so desperately needed. He still continued to get 2 hours a week in home therapy as well as 2 hour classes 3 days a week at the Clubhouse. Well, we saw a lot more progress in our little angel than we had previously, not leaps and bounds but certainly some steps forward not backwards.
2 weeks after Arek was born, Brad was laid off from his wonderful job and we were really hurting financially. He found quite a few jobs over the next year or so but for far less pay and virtually no job security. His Bipolar quickly kicked him into an extreme low point and he started to drift away from his family. He was injured in 2004 and almost lost his right hand. This only made his condition worse and he broke down to the point of eventually being hospitalized. This is where we discovered that he was Bipolar, as well as extremely depressed and his mental health journey began. Ok, so from then until now we barely survived on odd jobs from our Landlord and food stamps. Quite a miserable state we had fallen into. The great insurance company we had that covered all of Arek's services as well as Brads was the state of IL (Medicaid). Around January of 2006, Brad and I had decided to start a Pooper Scooper business (if you want details just Google it). We had failed (had been scammed) quite a few times up to this point and had decided that this was something cheap enough to start up and the market for it wasn't saturated in our area (burbs of Chicago). We had a website, made business cards, brochures and flyers and began the painful early goings of a business and received very little interest for a few months time, which was to be expected. We then got a few customers lined up over the next couple of months and things started picking up, when the bomb dropped on us. Our Landlord had found out that we were pregnant again, and considering we were living in a 2 bedroom apt. with 4 kids already, it was time for us to move. We were barely paying our bills, in fact, some bills we were not paying. Our rent was $900 a month and we would have to get at least a 4 bedroom when we moved, which would make the price to stay in the Chicagoland area flat out impossible. So we were forced to move to a little town called Canton, IL. A great little town and nice Community that has good schools and most importantly rent was less than half the cost it would have been in the Burbs. This was so sad because we had just received a bid for a subdivision as well as 10 other potential clients in our dog poo business. It wasn't enough and our business had to end. Poor Arek who had been making steps forward would no longer receive the Group Therapy he needed and was back to in home therapy which was not the most productive in his development. There just were no facilities around that offered the services available to him. We had a difficult time adjusting to the quiet country life. Our children and I had never been outside the Burbs of Chicago and hearing the people’s accents and seeing a tractor driving down the street was quite an interesting change of scenery. I, as well as Brett, flat out hated it. We were so far away from the good life with all the services, stores, Brett's best friend and my mother. The kids are really close to their Grandma, Papa and Auntie. Arek was maintaining status quo but not moving forward very much. Brad continued to struggle to find a job due to the lack of jobs available. Aghh, I was at wits end and Brad was not getting better but worse with the new medicine he had been given. Life was just too damn hard and I don't know how we made it through it. Arek finally started Early Childhood (preschool), which is a decent enough program. It is not Autism exclusive but a mix of developmentally delayed children. Early Intervention as well as the Canton School District does all they can to give Arek the services he needs. He really made some big steps his first year of school. He finally would hug us. He would attempt to receive a kiss and would let us hold him a little longer than before. He still played next to his sister rather than with her at this point. She being almost 2 and walking was bullying the poor kid when it came to toys and such. He finally was starting to interact a bit with us and his environment properly. Don't let Autism fool you Arek is a mad genius, trust me. He can figure out so many things, it is a never ending Arek proofing mission. We have no curio cabinets or knick knacks or other collectibles left. We have to stay a step ahead of him. The services he receives in school are good but not great. Sadly, they are better than what some kid’s receive. Sadly, they are not even close to the high level that other kid’s receive. This is part of the problem we hope to solve. Specialized private schools are for the rich and not statistically much more successful than good 'ole collaboration among teachers, parents and therapists. Group based learning is definitely the way to go. It just needs to be made more available to everyone, not just the really poor and the really rich. Arek is now in his second year at school and he will follow a few simple commands like, "give me your cup" or "give that to your sister". He struggles out a few slurred words and does not chew on things in his environment as much. Compared to when he was 18 months he has come a long way, although, compared to his 2.5 year old sister he is still only in the beginning of his journey. We have learned so much from him and have grown to appreciate even the smallest things about life because of him. To hear him say heeeere or noooooooah makes you want to cry with joy. This is our story in a condensed version and it is continuing to unfold right here in front of us as life happens. We will continue to grow and share our experience with you all as much as we can and encourage you to participate and help us build a strong community of parents, teachers and children so that the future may be brighter than it has ever been. Consider joining our forum! A more detailed version of our story for those of you who like to read can be found here. We will give updates to our life and Autism here!
