Living with Autism!

Hello and welcome to our blog on living with autism. We are a family of 7 and have a child with Autism his name is Arek and he is 4 yrs old. He is the sweetest little boy you could imagine. He was diagnosed with autism at 18 months and has received therapy ever since. He will attempt to communicate with words although very limited to mainly cup and food. We get an occasional poopy out of him as well. This is really exciting because a year ago we didn’t have anything as far as verbal communication from Arek. We didn’t get much other than laughter, crying and screaming. Now we get some words a hug and sometimes a kiss. If we ask him a simple request like put that on the table occasionally he will do it and smile. He takes care of his baby sister Amanda. They play together quite a bit. His other baby sister Alissa isn’t so nice to him or Amanda she is in the terrible twos and thinks the world is hers and only she should get attention.

It wasn’t always like this. Let’s go back to the year 2003. We had 2 children Brett and Lauren. Brad had a good paying job. We lived in Glen Ellyn, IL and life was pretty good. I had a curio cabinet with my collectibles and we had a DVD collection that was just well to big. Brett had a ps2 and GameCube with plenty of games for both. Lauren was only 4 and just a doll. Brett was 7 and a bit of a handful, he has always been intelligent for his age. He always has snappy comebacks and a good sense of humor. I was a stay at home mom and brad was going to Devry full time as well as working 50 hrs a week. We were just living life simple as we are enjoying our TV shows, baseball games, playing at the park with the kids, you know family things……Well in Dec. of 2003 our little baby Arek was about to be born and we couldn’t be more excited. He had been healthy in the womb and we had got to see plenty of ultrasounds of him. He had something called single artery umbilical cord. Basically umbilical cords are supposed to have 2 arteries and a vein he only had one artery and one vein. I had gestational diabetes so basically the possible low birth weight from the single artery was offset from the possible heavy birth weight of the diabetes. He was born healthy, normal and natural. It was a glorious time! Brad had the rest of the year off and things were so awesome. 2004 came along and Brad went back to work to find his company was changing and becoming more corporate then family owned as far as business practices were. He found out that he wasn’t getting the raise he was supposed to he was also not going to be moved to first shift as he had requested and been promised. He got a little upset at his boss and well he ended up laid off. This was the first crash in our perfect life. It took some time to find another job and the market had changed dramatically since he had started with that company 5 years earlier. Only temp jobs and low paying ones were available. We decided to try and make money from home on the internet but soon realized that it is a dangerous and cruel place. That many scams await the unsuspecting person. That to make money from home was not as easy as 123 like it was advertised to be. We struggled but somehow managed to survive on part time income and side jobs for our landlord. Brad finally found a decent job still about $6 less an hour but it was permanent. It was at a place that made high quality foam products for everything from double sided tape to airplane insulation. He was there for only a month and well let’s say it really earned its nickname we had given it “hell”. Brad was working and one of his co-workers wasn’t paying attention and cut through his right hand about 75% deep from his middle finger to his little finger. For those who have a strong stomach here is a picture of what his hand looked like a short while after the accident. It was devastating to us all he was not able to do anything with his hand for 3 months. After lots of therapy and time he was able to return to work and semi normal function of his hand. He was able to hold his children and all the things you do in life. He really gained a better appreciation for those who are disabled. After only a week back at work he realized that the safety factor of the company had not improved in fact it seemed less safe. He pleaded with them for improvement and well ended up leaving after having panic attacks and a few close calls. It was back to no income and more bills to pay. He did receive a small settlement from his injury which helped pay some bills and allowed us to live for about a month and a half. He continued to look for work and his mental situation began to deteriorate. He felt less and less safe at his jobs and the pay kept getting less and less. Ugh! Life was great to an extent because we were all together all of the time; he was great with the kids as well as with me. We were a close family, grateful for all the time we could spend together. I really didn’t mind the fact that we were poor as dirt. Our family was great support and when he was needed, Brad did work for the landlord to cover rent. I didn’t realize then that Brad was suffering from post traumatic stress disorder as well as anxiety, depression and ultimately Bipolar. Anyhow, he decided it was time to go back to college and try a different career. He had already gone to Devry before and was successful until it got too much and he had to choose his job over school. Now he wanted to go to school for HVAC. I can’t say I was thrilled about the career choice but it seemed like he would be good at it and it would pay decent. After a semester he had a 4.0 GPA and he was looking forward to finishing out his schooling and getting a job. Meanwhile, Arek was now almost 1 and I and my mother had noticed that something wasn’t quite right with him. He was very distant, not really interested in us or anyone for that matter he just crawled and spun things. After some time on the internet it wasn’t long before we had noticed everything pointed to Autism. At his 12 month checkup we discussed this with his doctor. She told us not to worry and wait that he would come around yada, yada, yada. Told us not to believe everything we read on the internet. Well, we decided to listen to the doctor. It was about 3 months later he wasn’t walking or even talking, babbling or nothing as far as communication was concerned. He still did not like to be held, barely cried and never made eye contact. He was in his own world you could say. We decided after reading more and more that he had to be evaluated. We demanded to our doctor that he be evaluated by early intervention. She agreed finally and the journey began. It was a few weeks or so later that they called and set up a time to come and evaluate Arek. After the initial evaluation they immediately considered him eligible for services and we created his eip (early intervention plan). They scheduled him for hearing tests as well as an evaluation at Illinois Masonic hospital in Chicago. They said that he would probably be too young to be diagnosed with anything but it was standard procedure to get him evaluated. Whew! our little Arek was now scheduled for therapy 6 times a week 1 hour each visit with a Speech Therapist, a Developmental Therapist, and an Occupational Therapist. At first, it was really tough on Arek as well as us to get used to the therapists. They were all nice and very patient. It really didn’t seem like it was helping him much but we knew it was a long road to travel, one that might never have an end. So we remained optimistic. He was getting some of the best therapy he could be I guess. We were poor and EI was the only option for us. A.B.A well is just too expensive. I can’t say that I really agreed with its process at the time. If you’re not familiar with the area of Glen Ellyn it is in Dupage county Illinois, one of the richest parts of Illinois. Anyhow, after a couple of months of therapy, the day had come for Arek’s evaluation. We drove to Chicago and after a little confusion found Illinois Masonic. We were both nervous and hopeful at the same time, we had already realized he was Autistic but you never know right. There was a team of therapists from all the fields, as well as a Psychologist and a Medical Doctor. They asked us some questions about Arek, we asked them questions about Arek and they evaluated and tested him for an hour or so. They then asked us some more questions and went off to their office to discuss and compare notes or whatever they do. After what seemed like an Eternity they returned and we could tell from the look on their faces that they were nervous. They spoke the words Arek has Autism and explained that there is no really known cause and then explained a few different theories on the matter. We were not surprised but it still was surreal. Brad, I could tell was shocked and I think for the first time realized the weight of the situation and I could tell was really shook up. It was a quiet drive back home. Brad had still not found a stable job and now we were pregnant with Alissa. He had received some grant money from school but it was not enough to live on of course. We continued to struggle financially and Arek continued to receive therapy. He wasn’t making much progress at all. In fact only his OT seemed to get him to connect at all. Then she had to leave because she was moving. By this time his speech therapist had began to connect off and on with him. It had been a year of therapy now, I had tried to work a few times but jobs that I was able to do were low paying as well and I wasn’t very comfortable with the outside world. Like I had mentioned earlier I have Learning Disabilities as well as ADD. I also suffer from the fear of driving and general socialized anxiety disorder. If I am not with somebody like Brad or my family members in public I panic really easily. Anyhow, I am a mother and was not comfortable being away from my children. One day our speech therapist asked us what we thought about having Arek receive therapy outside of the home. She worked for a place called the communication clubhouse. They are one of the best programs for young children on the Spectrum in Dupage County. We thought it sounded great and we of course agreed it would be best for Arek. The problem is that Early Intervention is focused on services in the home; in fact it is there policy. We researched it and realized that Group therapy is way more effective than individual therapy. We also realized that in Arek’s diagnosis it was recommended to be in a group like setting. We brought this up at our EIP meeting and lucky for us, our Case worker agreed to try it out and see if it made a difference. Wow did it ever. Arek was now going 3 days a week for 2 hours a day to what was called the connections group. It was specific for those on the Autism Spectrum. Of course there is no bada Bing bada boom here is your son, he is all better now. Arek was excited to go to school as we called it. And he rather quickly adapted to the routine of the group. He was receiving Speech, Occupational, Psychological and Developmental therapy all at once. It was like prep for preschool. He began to sit in his chair when it was time, he didn’t do the picture exchange thing very well but he allowed them to help him along with it. He loved to swing in there squeeze swing thing. The best part is that we were allowed, and encouraged to stay and watch the whole process. They had viewing areas for every room. Things were going good. Ok, meanwhile Alissa had been born and was about 6 months old, she was right on if not ahead of the game developmentally. She is just a sweetheart. It was now approaching 2006 and things were relatively good. We were poor as dirt but we were somehow surviving and happy, that is all that counts, right? Well by this time we had decided after much research to start a pooper scooper business. Google it if you want. We had to get income and Brad had quit school to be with the kids and me more, also he was doing more and more work for the Landlord which basically was only paying the rent. We registered our business, created a website, flyers and really went all out to try and make it work. After a few months, we had picked up a few clients and things were looking like they were going to turn for the better financially but like Brad used to love and say “In reality as in dreams nothing is quite what it seems” It is a quote from one of Dean koontz books. We were now pregnant with Amanda and when our landlord found out he well dropped a bomb on us. He told us that we had to move period. We had just got a whole sub division and were working out the contract when we were nuked. It wasn’t a financial thing it was a legal thing. Mind you we were a family of 6 living in a 2 bedroom apt., We were fine but I guess he figured 7 was more then he could accept or something. So he gave us until July to move out. Told us we didn’t have to pay rent for the last month and was really good about things. So now we were panicking, we made barely enough to pay electric and put gas in the car. Moving meant going from $980 a month in rent to $1400 a month rent and well that was just too much. We tried everything we could to stay in our area. Nothing could be done fast enough, we were going to be homeless. We looked all over the place and we found a cheap house for rent in Canton, IL a small town 200 miles south of Chicago. 45 minutes away from Peoria, IL Brads home town. Our families helped us with moving and we ended up in Canton. Now for Brad it was not too bad of a shock. I and our children were used to the busy life of the suburbs of Chicago and now we were in a town with corn surrounding it on all sides. Our first week here we seen a tractor just cruising down the street pulling a tree stump or something. I was not doing well. I was out of my element and so was our son Brett, he left behind his grandma and best friend. We hated it at first. Arek now was waiting to get reevaluated and start up services again. I mean no disrespect to Canton or any other small town, but there was no comparison to the services he was getting available. This is the problem we want to improve. Autism is getting an epidemic as far as the effects it has and will have on this country and the world. Aspies out there, I mean no disrespect. I do not view Autistic people as a diseased animal that must be put down or controlled or whatever. I believe in rights for everyone and diversity in culture. Higher functioning Autistics have contributed way more to this society then they have been credited for. More genius’s in fact I believe were on the higher end of the spectrum then we know. It is those like my son Arek and who have it even worse that I am talking about. They need more services then they get, they need better services then they get and it should not break a family financially to get them. Adults with Autism Spectrum Disorder also need more services; they are ignored more then helped. Things have improved vastly over the last 20 years. It still is not enough.Ok back to our life. Arek started receiving services and it was only for about 3 months before he turned 3 and was off to the public school system. Now I have to give Canton School District credit, they are giving him the best services they can and he has improved over the past 2 years. His teacher is wonderful and they have an Autism consultant that has helped them devise strategies for getting Arek to learn in the classroom environment. At first, he had regressed some at home due to the gap in services and the change in therapists. Once he was in school it was similar enough to the Communication Clubhouse that I think he adapted quite well. He was pretty cooperative with the teachers as far as being lead by the hand and what not. Gradually through the first year of school he slowly began to become more attentive. He became more attentive at home as well. About half way through his first year he began to attempt communication through mimicking gestures that his sister Alissa would do. It is confusing because I can’t tell what progress he has made that is contributed to school and what is contributed to his 2 yr old sister. She talks and is quite demanding as 2 year olds often are. He finally realized it was simpler just to hold his cup out to us if he wanted more. That is what she did and we would instantly give her more to drink. On the other side of the table Alissa learns from Arek as well, so she at times is Autistic so to speak. One thing that is a struggle is potty training Arek. He has no idea what was going on yet. Alissa won’t leave us alone about it but continues to go in her diaper instead. Or worse her and Arek just love to finger paint if you know what I mean. We clean the floors and the walls often throughout the day some days too often. Arek is in typical Autism fashion, he doesn’t like clothes very much and he would rather be naked. If we do not tape his diaper shut he will not keep it on and let’s say it is flat out nasty sometimes. Hmm maybe I could sell it on eBay. Just kidding. Of course Alissa follows suit with him on this as well. He is half way through his second year and as I began this post has improved quite a bit in some areas. OK great for now. Let’s move forward now to present day and look at some issues with our education system. At a young age the level of services is improved 100 fold for Autism and other debilitating disorders. Then the magic age hits and boom they are just lumped in General, Special education, inclusion whatever flavor your school uses. The services drop off to very non specific and generally speaking dumber down versions of what is expected of our other children. This is not really a fair and precise way to handle education of special needs. That is why there has been a rise in special (private) schools revolving around ABA or other forms of therapy. This is fine for the people who can afford it which are a very small percentage. Everyone else has to take what they can get from the school district they are in or move. I have personally seen children only a few years older than Arek Flat out not getting specific learning environments for the Autistic spectrum. Being disciplined for not behaving appropriately, this is not right. A person on the spectrum especially on the more disabling end is not always aware of his peers. Is interacting with their environment the best they can or the only way they can. Every school district must have Autism specific trained teachers as well as environments, even if they are in the current school as their peers (inclusion). When the student is at a certain level of readiness then they will be able to become more included in classes. Private Citizens, community businesses, local governments, and even state governments need to do this now. Speaking to some local parents of older Autism students they didn’t even know our school district had an Autism consultant brought in. Why would they do that for our son and not they’re children.? (IEP) individual education plans are great but they need to be overhauled to include specific standardized service based on what the individual’s diagnosis and needs are. It shouldn’t be up to the parents to have to raise hell and fight just to get what they’re child is supposed to be receiving to begin with. I know that it boils down to 90% financial 10% politics give or take 90%. If Autism was the majority of the classroom, would things be different? Let’s hope we don’t have to find out. I love my son Arek as much as any mother could love they’re child. I am for the rights of everyone. Let’s figure this out people. Let’s put a wrench in the system and make it work the way it was originally designed to work. Every parent not just those such as me with special needs children should get involved. Ok, I spoke my thoughts on this for now. There will be more to come soon please feel free to comment and keep coming back as we will update when possible. Hope everyone had a happy Easter. We did!
Thanks for reading!
Labs2008