No More Therapy

As of yesterday, June 5, 2008, the occupational therapist, Britta Hughes, told me that she feels Calen's not ready for structured therapy, and she is terminating his sessions. I was not surprised. After removing Calen from the distractions, he still intentionally dropped his toys on the floor, and did not cooperate with her. I agree with terminating the sessions with HER, but not with the statement "not ready for structured therapy". I plan on contacting his pediatrician today to see if there is another provider of speech and occupational therapies because as of now, he isn't receiving anything. One difference I noticed right away: when the sessions first began, an intern named Luke was working with Calen. Calen responded very well. The change in Calen's behavior didn't appear until Luke left. He graduated. I will see about finding Calen a male therapist. I actually feel a bit of relief due to high gas prices and having to leave work. The constant "go" has slacked some. But Britta was kind enough to give me her phone number and invite me to call her anytime to get ideas on activities we can do at home to work on his fine motor skills. I plan to do activities that include my daughter, and will emphasize turn-taking and sharing with each other. This can be a good thing actually. Britta was a bit impatient and never had kids. It's past time for her to retire. Luke was great and I wish he was Calen's regular therapist.

The battle continues with his daycare. I spoke with the owner yesterday on the phone. He is real piece of "work". He told me that he will call the State to find out some information about Calen being on the nutritional program. He stated that if it became too difficult to properly feed Calen, then the State would kick him off the food program, and I would have to provide all his meals. So I decided that he can't make a phone call that I can't make myself. I called the State's Daycare Division and again spoke with Mrs. Richards. She gave me the number to the Food Nutrition Division. There, I had the pleasure of speaking with Traci Person. She consulted her supervisor, James Peoples. I was informed that Calen will NOT be kicked off the program, and the daycare MUST comply with the doctor's note on Calen's file. The owner was concerned about reimbursement for Calen's meals (off all things to be concerned about when the whole thing is about my son's health). I was told that the daycare WILL be paid for his meals. She also was kind enough to fax information straight from the Minimum Standards guide concerning meals. I informed Mrs. Person that my son is autistic resulting in this diet and after noticing some improvement, the diet was endorsed by his pediatrician. What she sent to me was a huge help. When I dropped my babies off at the daycare, I made a sign for Calen's classroom door, and I made another with my phone number on it for the kitchen. Here's the kicker: a note I had made before was ALREADY UP in the kitchen. Well now they have 2 notes. Mrs. Person told me that if they mess up again or say that they cannot provide the indicated diet for Calen, that I should call back and let them know. That is considered a "deficiency". All this has to go on because of 2 dim-witted staff members and an owner who seems to only be concerned about getting paid. The owner was pushing for me to bring his snacks, and I refused. I told him to serve my son fruit. They had the nerve to say that they were concerned about him eating too much fruit. So I guess the crackers was supposed to be better??? I have a concern about my son eating too much junk food for snack if that's the case. But my point is this: a parent can decide to provide their child's meals but it must be in writing and included in the child's file. Had I just said "okay" to this idiot and provided meals and snacks, I would be paying out-of-pocket for his meals and the owner probably wouldn't even report it to the State. Therefore, he would still get paid for food he isn't serving!! Not to be graphic, but he can put his penis away because he is not screwing with me! LOL
Please check out the web site for the States Minimum Standards
www.dhr.state.al.us
check out page 30

Another daycare situation

Yesterday, I went to pick up my children from daycare. I was about an hour and a half early. Calen's class was out on the playground. When I stepped outside, Calen was nowhere to be found. The teacher was sitting on her butt talking on her cell phone. I yelled "Where is Calen?" She jumped up with a surprised look on her face and said "You're early." I just stood there looking for him. She went over to this little plastic house and pulled Calen out from behind it. He had dirt all around his mouth, all over his hands and down the front of his t-shirt. He had been eating dirt. I became extremely angry. What makes it worse is that the owner, Ron Harden, was out by the dumpster in full view of the situation. I began to fuss at the teacher for letting Calen out of her sight. She said she usually puts him in the swing (he loves to swing) but she didn't want him out in the sun because it was too hot. That's good, but that doesn't excuse her being on the phone. Her full attention should always be on the children! Especially when outside. I've talked with them about Calen before. So as I was pulling out of the driveway of the school, I was on the phone with the State's Daycare Division filing a formal complaint. I informed them of his diagnosis, her cell phone use, the fact that the owner witnessed the entire incident, and the fact that my baby has been allowed to eat so much dirt, that it shows up in his poop. I've found a daycare in Sheffield with the United Cerebral Palsy Center called "Wee Care". They work with children of all levels. I called and left a message. I hope to hear from them so I can find out what they're all about. I told the state worker (named Mrs. Richards) that the number of daycares around here (that are decent) are limited. Plus, I'm not the type to run. This staff will be made to do right, or I will be part of the blame for them being shut down by the State of Alabama....they can try me if they want.

Introducing my daughter and Calen's little sister, Kylia! She is 20 months old. She is my little sweetie, and tries so hard to be the boss. She surprises me at how quick and smart she is!! I've gotten so used to Calen NOT doing things that it shocks me when she does them. For example, verbal commands are no biggie for her. I can tell her to do something and she does it! Where the story is not quite the same for Calen. I'm trying to learn to treat them the same, but respect their individuality. That's not easy! I love being a mom, though. What a challenge.

Well, the doctor's visit in TN went well. He e-mailed me a plan for Calen. We're going to start with supplements. There are 6 different ones. One is a B-12 shot. I'm not at all comfortable with injections, so I replied and asked him to explain what each supplement does and to tell me if there is an alternative to injections for B-12. After the supplements are going good, we will start with treatments for yeast in the intestines. Then, we will see about what tests we should do to test for any toxins in the body, like mercury for example. We will go back on July 31. I also want to know if Medicaid will cover these supplements. He uses a pharmacy in Birmingham that caters to Autistic children/families. If I give him the green light, he will notify the pharmacy and they will ship the supplements. I just have to know will Medicaid cover this first. I'm not real clear on that subject.

Today is my relaxation day. I haven't had one in almost a year. I took the kids to school, called in sick, and stayed home. I found it hard to relax from the guilt I was feeling. I felt like I dumped my kids. I also feel guilty about lying to my boss. I miss my kids, but I have to force myself to relax. So what I did was after I dropped my kids off, I went to Joe Mugg's and got my favorite Mocha Frappe. I stopped at Jacks and picked up a wonderful breakfast, and drove straight home. I enjoyed a wonderful meal, still sipping the coffee, and just trying to relax. Funny how the mind doesn't want to let things go. The day is flying by, and I would like to enjoy the rest of it. I will be able to face tomorrow with a little strength I hope.

This is Calen's school picture. He is so handsome.

Today, we had to attend Occupational Therapy. His therapist's name is Britta. She is a lady in her 60's and is talking about retiring. Personally, I think she's ready. I respect her because she's dealt with all types of kids over the years, but I don't think she understands my son (or maybe autistic children in general). When we come into the therapy room, there is a big contraption that swings, and Calen LOVES to get on it and swing. He runs directly to it. When I have to make him get off the swing and sit in a chair, he gets upset because he can't do what he wants to do. That's any child. When the session starts, he may toss a puzzle piece onto the floor rather than put it where it should go. This went on pretty much the whose session because not only is his attention span short, he's distracted by the swing. I suggested that we make a minor adjustment to the environment so that he never sees the swing. Her response is that "he is just doing this to control the situation and get his way." I was bothered by this accusation. I quickly let her know about his cognitive level, volunteered to bring her a copy of his Sparks report to help her better understand my son, and told her that we have to change his environment or we will never get anywhere because of the distractions. She says "the whole point is to do this therapy no matter what is around." I told her it doesn't work that way with my son. She changed her mind, and totally agreed. She even showed me some places we can go for the next session. I hope she saw that I won't be argued down when it comes to Calen. I still resent the accusation of his trying to control the environment. She may be right, and I just don't get it. This is my first child, and she's got years of experience dealing with children. I'm going to speak to some parents about how they handle discipline. I don't want to be the type of parent that takes up for her child when the child has done wrong. I need to do more research. Will tell what I find later.

Today, I hugged him and called him sweetie. He actually tried to say it!! I was shocked. I repeated sweetie 3 times and he made attempts to say it all three times! I am so proud!!! Not only that, I'm overflowing with hope!! Tomorrow is our trip to TN to see Dr. Kalb. I can't hardly wait to see what happens. Please get the word out...Dr. Daniel Kalb in Franklin, TN now accepts Alabama Medicaid! He is a DAN! doctor (Defeat Autism Now). I called his office and did a little talking and finally convinced them. It wasn't hard. I just explained that there are no such doctors in the entire state of AL. I also contacted AL medicaid in Montgomery, and they said all the doc had to do is accept AL medicaid!!

And even more wonderful news.....House Bill 150 passed today in a special session. The Alabama Autism Support Act will establish a permanent Council that will allow for greater support for individuals with Autism and Asperger Syndrome. I look forward to Governor Riley signining this importnat piece of legislation into law.

GOD IS MOVING MOUNTAINS

Last Day of Preschool

Today is Calen's last day of preschool. Tomorrow is only a half day for the others that will be there. His schedule is Mon/Wed/Fri. On one hand, I'm glad because it will be a little relief for me as far as leaving work to pick him up and running back to work. I will miss that time we spend together, too. I enjoy that break in the day when I get to see my baby. On the other hand, I know how much he loves preschool, and I'm sad for him that he will be in daycare everyday. But it's only for the summer, and I'm hoping that we can get through the summer without any major problems (or small ones for that matter). I'm pretty exhausted.


This Fall will be 5 days a week at Howell-Graves. We go to see the DAN! doctor this Friday. (Defeat Autism Now) He's in Franklin, TN about 2 hours north of here. I have to get new tires for my car, and directions to the office. I'm excited about getting to see this doctor. I hope to see an improvement in Calen so he can focus better. I like how one parent I talked with put it...she called it a "fog". I, with the help of God and prayer, will pull him out of it so he can do better. I can't wait to get to know him for the first time...to find out his thoughts and feelings. Most of all, I can't wait to hear him call me "MOMMY". I've waited for 3 years. Pray for us.

Memorial Day Weekend

The hardest thing about this gf/cf diet is the constant watch over his food. We don't go out to eat, but when the opportunity comes, I prepare his meal at home and bring it with us. His meal usually consists of baked chicken or talapia, a veggie and fresh/canned fruit. I also bring his Juicy Juice. I prefer my children to drink 100% juice over sodas. A lot of people who aren't going through this experience first hand don't have a clue how hard it is to follow this diet. You pretty much have to be detailed-oriented because of the constant reading of labels. I'm still pretty new, so I bring along his 5 page list of things he cannot have. One parent I spoke with helped me a ton...don't focus so much on what he CAN'T have. Instead, focus on what he CAN have (whole foods - meat , veggies, fruit). Once I saw it like that, the diet became a lot easier. I still study the list so I can try to memorize things for him.

Well, the reason I'm going on about the diet is this: there are people out there who don't give a damn about what you may be trying to do for your child. On Memorial Day, I went to my baby sister's house to eat. There, I gave Calen his meal that I prepared at home. He cleaned his plate! I knew he was full because he ate a lot of food. My daughter and I only ate a little so we can have room to eat at their Grandmother's house (their absent father's mother). She tends to cook a huge meal and invites the entire family over. When we get there, she acts a little bothered that Calen can't eat any of the food. She knows about his diet. I've explained it to her twice. Well, while I'm in the living room talking, my son comes out of the kitchen with something white in his hand and it catches my eye. I asked what that is, and someone said "a slice of white bread". A SLICE OF BREAD....I yelled for them to take it from him, and they did. I jumped out of my chair to try to get that bite out of his mouth but he swallowed it. I looked at the bread and saw he had taken 2 bites. I asked who gave it to him, and Grandmother spoke up and said she did. She said she didn't know he couldn't have bread. I said that I was sitting in the next room and I should have been asked. The lack of concern and the looks of confusion as if I was making a mountain out of a molehill were amazing to me. This isn't some sort of "fad" diet that I'm trying out on him. This isn't a joke. I took my children and we left. When we got home, he started another crying episode. So I pulled out my cell phone and video taped my child. We're in the dark so you can't see anything. All you can hear is his painful cries. I typed a text message under the video telling them that this is what the bread does to him, and there isn't a damn thing I can do but sit here and watch my child suffer. I only hope the message hits home, although I'm not optimistic. Knowledge and compassion seems to escape these people. Needless to say, we won't be back over there for any food-related events, and while there, the children will be under my strict supervision. I could see if someone who didn't know he was on the diet gave him the bread. I wouldn't be this mad. It's the fact that the grandmother did it, and she KNEW he was on a restricted diet. It was as though she thinks I'm just doing this for the hell of it, and she was going to make sure he gets fed or something. I don't know, but that was just plain disrespect for me as his mother. I do the right thing and take my children to see their dad's family. Just because he was only half-raised doesn't mean I have to stoop to his level and keep other family members away. That wouldn't be fair to my children. But pulling stunts like this only makes things harder. If my rules concerning my children are disregarded, then my children will NEVER be left alone with any of them. On top of that, the visits will be decreased. She knows where we live. If she misses them that much, she can burn her own gas. I apologize to those who may be reading this...I'm just angry today. I actually feel better now that I've typed it out. I'm at work right now, and I miss my babies.

IEP Meeting

Yesterday, May 22, 2008, I attended the IEP meeting for Calen. It was only to change his status from Development Delay to Autism. The meeting went well. I expressed concern about the summer for Calen. He will not have access to such a structured environment at the daycare. I also know that the preschool uses picture schedules to help Calen transition from one activity to another. The speech therapist, Mrs. Grissom, volunteered to help me create 2 picture schedules for him...one for daycare and one for home. I told her I preferred to use real photos instead of computer generated ones. We decided that I can take photos with my camera phone and e-mail them to her so she can create the pictures to be used. Lisa Highfield, the Coordinator of Special Education Services, also volunteered to come to the daycare and hold a meeting with the entire staff to educate them about autism and the ways they can help make things easier for Calen. I also found out that Mrs. Highfield is a part of the Autism Coalition. I've never heard of them before, but I plan to find out more. I also volunteered my services to Mrs. Highfield....if there's anything I can do to help, she can call on me. I feel like a ton of bricks has been lifted off my shoulders...for now.

There are two facilities in Huntsville that offer ABA therapy. The Riley Center and Behavioral Intervention Services. After calling and talking with people from both centers, I decided to go with BIS. Brandy Worthy is the lady I spoke with. She was so helpful and very informative about the many options I have. The one I liked most was that they can contract with my son's school. With this, they will send a therapist out to train his teachers (as many that want to come), para-professionals...everyone that will be helping Calen. And this isn't limited to just my son. ABA therapy is good for many children with various disabilities. I didn't like the Riley Center because upon speaking with Teresa, there were too many red flags. One being the fact that a lot of my questions couldn't be answered. She kept telling me that she needed to discuss my questions with Lisa Highfield. Well, I have a problem with that because I AM THE PARENT. Plus, my instincts were telling me no. I told Mrs. Highfield about my research, and she was interested. She also said she's met Brandy Worthy before. She said she had Brandy's number and couldn't remember what she did with it. I pulled out my cell and gave it to her on the spot. If we can get something going, I told her I wanted to attend the training, I wanted my family (the one's who babysit Calen sometimes) to attend, and I wanted the daycare owner and staff (as many as possible) to attend. Mrs. Highfield agreed. So things are looking up. She said my fighting may cause other parents to stand up and join us! She said I was "paving the way". That feels pretty good to hear, but it feels even better knowing that I am getting closer and closer to getting my son every possible bit of help out there. It amazes me that there are parents of children in my son's class who aren't doing anything. I guess that since there aren't a lot of resources here, they're content with what little they can get....well not me. I have plans for my son. He will grow up and be independent and happy. He will always have autism, but I AM THE ONE who will make the difference as to the quality of his life. Good people like Mrs. Grissom and Mrs. Highfield make the difference. People like my advisor, Mr. Thompson, make the difference. I don't mean to pat myself on the back...GOD ALMIGHTY moves the hearts of man and opens the doors of opportunity for me to be able to "pave the way" for my baby. He gives me the strength.