Resources

I've been pondering over the different agencies that we use or have used in the past while on our autism journey, and I thought that I might post about them here so that if any of you as readers ever have someone that might need help finding help, you might have some suggestions for them.

*First and foremost, our pediatrician has been wonderful! A pediatrician should always be on the lookout for early warning signs and they should be able to point you in the right direction to find more specialized help.

*We used the First Steps program until Matthew "aged out" at three years old. First Steps is an early intervention program that provides services to children from birth to age three. The Point of Entry (POE) office for our area is in Bowling Green. They coordinated Matthew's first evaluation and then based on those recommendations, set up the services that he required. Matthew was able to receive speech therapy, physical therapy, occupational therapy and developmental intervention. First Steps works out a Individual Family Service Plan (IFSP) which is sort of equivalent to and IEP once the child enters the school setting.
Barren River District
1502 Western Avenue
Bowling Green KY 42103
(270) 746-9941
1-800-643-6233
FAX: (270) 746-0729
Allen, Barren, Butler, Edmonson, Hart,
Logan, Metcalfe, Monroe, Simpson, Warren
Counties

*The Regional Child Development Center (RCDC) is where Matthew received his first evaluation at around 20 months. They recommended the above listed services for him as well as referred him to see a developmental pediatrician. We took Matthew back to RCDC when he was 5 and this is where they first mentioned autism as a diagnosis.

*The Commission for Children with Special Health Care Needs - This "clinic" sees children with all sorts of needs for many different things. Both of my boys have actually been to the clinic to have their hearing checked by their audiologist. Matthew was sent due to having so many ear infections and his ear drum rupturing to rule out any hearing loss as being the reason for the delay in speech. He has since been back to have rechecks and as a matter of fact, I will be calling one day this week to set up another appointment. When Jacob was little, he got into an awful habit of saying "huh" all the time. I took him to be sure he was hearing okay, which he was. They provide other services as well. This happens to be where Matthew was evaluated by the developmental pediatrician for the first time. The doctor actually comes from the Weisskopf Center in Louisville once or twice a month and does evals at the Commission. That makes for a nice resource since there are no local Developmental Peds in the area.

*The Weisskopf Center - This is located across from Kosair hospital in Louisville and is a part of the University of Louisville. I have spoken about them on my family blog in the last post or two. Matthew was taken to Weisskopf a little over three years ago and was evaluated by an entire team. It actually took two visits to get it all in. The first visit that we made, he was seen by a Speech Language Pathologist, Occupational Therapist, a case social worker who provides info about resources that are available, and a psychologist. On the next visit, he saw the Developmental Pediatrician, and then Jason and I were taken into a conference room where the DP and Psychologist went over all the findings and gave us a diagnosis. (Might I add that was a gut-wrenching day!) louisville.edu/medschool/pediatrics/wcec/weisskopf-center-for-the-evaluation-of-children.html

*Vanderbilt Children's Hospital is where we saw the neurologist. There were no neurologists in our area that specialized in children was the reason for our going to Vandy. While we didn't get much helpful information there, Matthew's MRI and EEG were performed there and they were wonderful with him there!! www.vanderbiltchildrens.com

*This is probably something that most people wouldn't think about, but we have to have a special dentist. The closest ones that accept special needs children (that we know of) are in E-town. We LOVE her!!! She is absolutely wonderful with Matthew!! She was so great with him that I take Jacob there too! They are pediatric dentists, but also work on teeth of the little tykes with special needs. AND, it's actually as close to E-town for us as BG is :)

*Let's not forget the Kelly Autism Program!!!!!!!!!!!!!!!!!!! Whoo-hoo!!!!!!!! KAP provides services for our special people who are on the autism spectrum that range in age from 7 years through college age. They are divided into separate groups of Elementary, Middle, and High School and College. Students attend during three semesters (fall, spring and summer) for two days a week. During their time there, they have both small group time as well as individual time to work on their personal goals and objectives. (They also have a white room and a black room and Matthew loves them both!) There are wonderful staff there whose desire is to help these children reach their fullest potential! This is one of the most awesome resources in our area as far as I'm concerned!!! kap.wku.edu/

*Although we've never been a part of the program, I feel it's important that I mention The Early Childhood Center, or Big Red School, there at WKU. It is a service provider for children in ages from 15 months to 6 years, unless that has recently changed. They have groups that are made up of children with delays and those without. www.wku.edu/chhs/cms/index.php/centers_institutes/cec/ecc

*The Communications Disorders Clinic at WKU - In the spring of 2007, I asked Matthew's speech therapist at the school to help me find some additional therapy for him. One place she recommended was the CDC. I also learned about KAP at the same time. This provides additional speech therapy for Matthew in conjunction with that that he receives at school. It was quite frustrating to me that a child who was practically non-verbal could only get an hour of speech services at school!!! There are definitely parts of our school systems that need to be changed, but I'm not going to discuss that now! www.wku.edu/chhs/cms/index.php/centers_institutes/cec/cdc

I have tried to include links to the program's websites if available or any contact info. If you need further information, feel free to leave a message or e-mail me.

Sickness and Autism

One of the hardest parts of having a child with autism, for me, is the lack of communication. One of the biggest difficulties associated with the lack of communication is the inability for the child to be able to tell you his or her wants and needs...especially those associated with the child being sick or hurt. It really goes back to a lot of instincts and mother's intuition. In my case, I've had to become aware of Matthew's behaviors and notice when those behaviors change pattern. Just most recently, I posted on my other blog that I took him to the doctor yesterday and he did indeed have an ear infection. Matthew did not come up to me and say, "Mom, my ears are hurting. I think I have an ear infection." Admit it, most 11-year-olds could easily do that. Instead, I had noticed in the past several days that Matthew had been a bit crankier than is usual and his self-injurious behaviors had increased. (I should have took him a few days ago.) Yesterday at KAP, they noted that he slapped at his ear and thought he acted as if his ear was hurting. With a reconfirmation of my original thoughts, I made him an appointment and sure enough, both ears were infected. If I had went with my first gut thought, I would have taken him last week to the doctor instead of waiting. Since someone else noticed the same thing, I decided to stop second-guessing and take him on. Our pediatrician and her staff understand our situation and that it is a guessing game with Matthew at times, but that if I feel like something is wrong, they do not hesitate to get him in and check him out. Quite honestly, I don't recall a time taking him that something was not wrong. Matthew has had trouble with ear infections from the time he was a baby, so we've gotten used to dealing with this. Knowing his history makes understanding his actions a little easier too. (As a side note, when Matthew was an infant, I didn't really notice anything until the day his ear drums would rupture. He would sleep all day long and when I would check, his ears would be draining. Talk about feeling inadequate, but there were just no signs there! He has had VERY FEW fevers in his life, and does not run one with ear infections.)

Some of the signs that are sure-fire indicators that something has gone amiss for Matthew are, him becoming more cranky and whiny than usual, his self-injurious behaviors intensifying, as well as him becoming more aggressive with me. (He's been pinching and scratching much more here lately.) But, let's think this through. You are a child who has two ears that are hurting. You don't understand why they are hurting, and you have no way to tell anyone what is bothering you. Umm yeah, I think I might pinch and scratch someone too. As much as it hurts, at least I know that something is wrong and can then take him to get him help.

I have and do worry about Matthew becoming ill and me not knowing. What if he has some serious illness and can't tell me any of the signs. It would seriously be like hunting for a needle in a hay stack! Just like the morning he broke his arm. I could tell there was something wrong from the tone of his cry, but finding the source was harder. I seriously thought he might have hurt his back from the way he fell straight down on his tailbone, but when I picked him up and saw the way his arm hung, I was pretty sure that was it. Love his heart, he hurt so bad and didn't know what to do. He was so pitiful that morning.

This is another one of those hard to deal with aspects of parenting a child with autism.