Today is Your Birthday!

Happy 5th birthday my angel! You were born on a Thursday and today is a Thursday! How cool!

It's a bit scary to think that you are 5. When you were a baby I could more easily explain away your unusual behavior as normal baby/toddler/preschooler stuff. If you screamed because something was upsetting it was much more acceptable behavior.

Now you are nearing Kindergarten. If you have an unusual fit it is much more obvious that you are not like the other girls. I worry so much about you as you go out into this world.

I kissed your tears away as you cried yourself to sleep again last night. I reassured you that it was ok to go to sleep because when you woke it would be your birthday. I look forward to our celebration at Mancino's tonight after work. I have presents for you.

I know you will probably only eat the pepperoni off of the top of the pizza and you will probably yell or sing loudly in the restaurant. That's why I like that place. It's good and it's rarely crowded. The things I have to consider when I take you out.

With each new birthday we will have new challenges to tackle and old problems that will have slipped away. I'm proud of you every second and I treasure your sweet little heart.

Happy Birthday,

Momma

In All Fairness

There was one thing that I did get out of that workshop. I learned that it is often necessary to be more literal when I talk to Cassidy. Explaining step by step what I want from her instead of just assuming she understands.

Telling her, "we are going to put on your coat, go outside, walk to the car, get in and I will drive you to school." is much less overwhelming than just telling her, "we're going to school."

Explaining things out in steps is a good way for her to understand what to expect. I have been using it with her and she seems more responsive and less panicky.

Saturday's Workshop

Well it wasn't great. They had an expert on autism from Riley Children's Hospital speaking. The sad thing was that she wasn't a very good speaker and said NOTHING that I didn't already know. I'm finding that out a lot in my constant search for information that I rarely find out anything new.

Anyway, she used PowerPoint slides and basically read word for word everything they said. They didn't need an expert in the field to perform this task. Bubba Joe off the street could have done this presentation as well. I was disappointed.

I met Cassidy's teacher, Miss Cathy there. Cathy is a wonderful person and it was nice just to spend some time with her and discuss Cassidy.

During the first break in this workshop I had the most amazing surprise. I RAN INTO MISS JILL! She was Cassidy's teacher last year and she was so great with her. I mentioned earlier that she really pulled Cassidy out of her shell. I give her credit for putting my angel on the right path.

It takes a special person to even put out the kind of effort that was needed to make Cassidy participate in class. Jill was able to do that for her. Cassidy would talk about her all the time and whenever she would see Jill she would run to her with such joy.

Jill told me that she still thinks about Cassidy all the time. She said she could not see a toy duck without thinking of her. She was as happy to see me as I was her. I gave her my phone number and email address and I plan on getting her together with Cassidy soon. She will not believe the difference in Cassidy.

Cathy and I left the workshop early because she started have a reaction the perfume the woman next to us was wearing. We went out for lunch and had a great conversation. So the workshop itself was a bit of a let down but seeing Jill and spending time with Cathy made it all worth it.

I've got some good people behind me and my daughter and I am so grateful.

Next Steps

March 8th or June 14th 5:30-7:30pm at the Riley Hospital Outpatient Clinic, lower level conference room B.

Next Steps is a workshop for parents who have a child who has recently been diagnosed with autism. (Autism Spectrum Disorder for the politically correct. GEEZ!)

Cost is $25 for up to two adults.

Contact Pam Anderson at 317-274-8162.

I will be signing up for the one in June. Since I will be attending the Ball Memorial worksop this weekend I think it might be best to give myself some time between workshops.

MEOW! 

Pretty Kitty 

No more pictures! 

Finally at Riley

Riley went ok. We met with a Dr. Williams. Cassidy loved her long fingernails.

She told us..."she has autism." DUH! BUT added that it is very mild. Riley is hooking us up with a therapist here in Anderson named Patrick Hall. They gave me the phone number for The Autism Society of Indiana. 1-800-3AUTISM.

Cassidy is so different than most autistic children. She is not withdrawn and she is funny and entertaining. In the waiting room she was reciting the Pledge of Allegiance loudly and "reading" a dinosaur book to everyone in the room. A couple little autistic BOYS (boys are much more likely to be autistic than girls) were sitting there with their fingers in their ears cringing at the sound of her booming voice. I found it amusing and sad all at the same time.

I am grateful that what she has is mild. I have such difficulty with her little quirks sometimes as it is. I cannot imagine she was moderate to extreme. Cassidy's most annoying trait is that she likes to SCREAM and little things upset her. The Riley staff told us that they did not recommend meds at this time.

More than 5 days...

I was starting to become upset that I had not heard back from Riley Hospital. Since I was sure that it would take several months to get in I was anxious to get the appointment set up. I had left a message last Monday and the machine that answered my call said that I would hear back within 5 business days.

Well today I would consider to be day 6. I was planning on calling back. I had not gotten a chance because I had been so busy at work this morning and in the middle of it all THEY CALLED.

A woman named Laurie called and asked me a lot of questions about Cassidy. I find her so hard to explain. Most of the questions she asked me, I answered with a no. Cassidy does not spin, flap her arms, bang her head...she makes eye contact, she likes to play WITH other kids...

But of course there are the affirmative answers that always keep me wondering. Questions of her language delay, sensitivity, irregular sleeping and eating issues...

I was so glad just to finally be talking to someone from Riley that I had not gotten to asking her when I could bring her in. At the end of her questions she asked me if I would like to bring her in TOMORROW! "Yes, yes, yes of course...I thought it would be...."

I called my mother and told her the good news. I am so excited to finally have her evaluated by this hospital. I was once told that it would take 3 years to get her in. Then I thought it would take 6 months. I never thought it would happen tomorrow. I am hopeful.

Christmas 2004 on her new pony. 

Hi Aunt Michelle!

Cassidy was with me at Camp Chesterfiel Feb. 5.
http://www.campchesterfield.net/


As we walked through the cafeteria she looked over at no one, waved and said, "Hi Aunt Michelle!"

My sister Michelle died of lukemia in 1988. Cassidy's middle name is Michelle. Since Cassidy was born Feb 24, 2000 she never knew Michelle and Michelle was never an aunt in her lifetime. It would have been odd if she would have just said Michelle but she said, "AUNT MICHELLE." It would have been odd if she would have said it while at home, but she said it at the spiritualist camp.

When we tried to ask her about it later she refused to comment at all.

Dairy Free!

The director of The Little Star School asked me if I had Cassidy on a dairy free/gluten free diet. I told her no and asked no questions about it since she quickly moved on to tell me other information about the school.

I got on the Internet later that day and found this web site. http://www.gfcfdiet.com Mom and I both read it and felt hopeful about trying it. Giving up dairy is hard since she LOVES cottage cheese and ice cream but giving up wheat...that was really hard. We tried it for 2 days and saw no changes.

It was difficult for us to find things that Cassidy would eat. It was frustrating and showing no results at all. I know it was only 2 days but it is already difficult to make this child eat. We decide to just cut out dairy first...this meant no chocolate.

That lasted about a week. Now we are back to normal and are just a little more cautious with the dairy but it seems hopeless. We talked to the family doctor about this on Monday. He said that he had known people to try it and get no or few results. He said that when it comes to something with no cure people start making up cures.

I feel he is right. I have tried so many "natural healing" methods in the past. I have little faith in such things anymore. *sigh*

Autism Workshop

Kathy Miller (Cassidy's teacher) sent home a note with her informing me about a workshop at Ball Hospital in Muncie on Feb 19. It's free but I had to call and register.

Kathy called me today to confirm that we were both going. We made plans to sit together and get lunch together. It's from 8-3 in the lower level of the outpatient building.

phone#765-741-1073

Waivers

I called Tuesday to get Cassidy on a waiting list for the autism waiver http://www.in.gov/fssa/servicedisabl/autismtrain.html

I was told that forms would be sent to me and I was to complete them and return them to see if she qualifies. It will take at least 4 years for her to receive this benefit and I was told by the director of Little Star that it may be in danger of being discontinued. I cannot worry about that. I just take it a day at a time.

No Referral At All

The doctors office called me back a few hours after our visit on monday. I was told that Riley doesn't take doctor referrals and that I would have to contact them myself. http://rileychildrenshospital.com/document.jsp?locid=325

I called the number they gave me and got an answering machine. I was told to leave a message and they would call me back within 5 days. (That was 4 days ago and no reply yet) The message said that they were taking appointments now for October.

Cassidy's Cold

On Monday I decided to take Cassidy to the family doctor since a cold she has had for a week seemed to get worse instead of better. I wanted to make sure that she didn't have a sore throat or ear infection since she cannot communicate such things very well. She had been crying in her sleep the night before.

I took half a day off of work and got her into the doctor. She was fine. I took that opportunity to ask about Riley Children's Hospital. They told me that they would get a referral for me.

Last Week

Tuesday, Feb 1

I contacted the Little Star School for autistic children in Carmel Indiana http://littlestarschool.com/. I was told that it was $300 a month to use the school facilities and I would have to pay a therapist on top of that between $12 and $15 an hour to work with Cassidy while there.

Although I felt this was quite expensive I decided to go in and check out the school and talk with the director. I left work around 9:30 and it took over 40 minutes to reach the school. When I got there I waited about 15 minutes in an lobby before I could go in and talk to the director. I noticed a few children coming out of cubicals with therapists.

One girl looked to be around ten years-old and walked past me blankly with her toes turned slightly in. A younger boy came by and with not much more expression than the girl. I could not help but think of Cassidy's smiling and expressive face, her friendly bubbly ways and the sparkle in her eyes. Could she really be in the same category as these children? I felt so confused.

I met with the director and she showed me around the school. She showed me the little cubicals the kids work in and they made me feel so clostrophobic. There was a large indoor playground with a lovely padded floor. It had a huge indoor swing set. There was a kitchen with cabinets assigned to each child.

In the kitchen the director told me that some of the children are on a dairy free/glueton free diet. http://www.gfcfdiet.com I found this intriguing.

I didn't feel like the school was right for Cassidy. It focused mostly on verbal skills but her problem lies mainly in coping and behavioral skills. I was glad I went though. The director, being the mother of an autistic child had a lot of input about what I should try. She gave me a folder information and told me about the Autism Waiver.

You were born to me...Cassidy

Since she was 15 months old my darling Cassidy has been suspiciously different. She had a delay in speech and was too easily upset. Cassidy would engage in repetative play by lining up toys and moving them to line them up again. When she was nearly two years old she began to have fits whenever an adult would cough or sneeze. (Other children were allowed this luxury)

We enrolled her in preschool when she was 3. Hoping that she would come out of her shell and improve her communication skills we dropped her off and hoped for the best. Well, the teachers gave it a good try but were quickly upset and frustrated with my baby. She cried and screamed a lot and would have no part in following their instructions. I went to the local public school and asked for help. They referred me to a school about 20 minutes away that had programs for children like her. Well, not really. The kids had problems ranging from down syndrome to deafness. What changed my child more than anything was her unusual bond to her teacher, Miss Jill.

I am not sure if Jill was actually DOING anything special but Cassidy loved her. She was a small and sweet woman with a pleasant soft voice. She fell in love with Cassidy and the experience really brought my daughter out of her shell. An entire staff of teachers and therapists were working with Cassidy to help her. In March of 2004 I met with this staff and they told me that they had unanimously diagnosed her with high-functioning autism. That was Jill's only year teaching that class. Officially she was a substitute teacher.

We moved to a new school district the following year and Cassidy seemed to enjoy her new school where she currently is attending. The problem is that she is still extra sensitive and easily upset. Often the teachers cannot control her as she screams in a panicky rage. I see this often at home as well.

I am actively trying to find ways to help my baby. This blog is to document everything I do from this point on in order to help my child and what kind of results I get. It is also to brag on her accomplishments and keep record in order to compare her behavior at later times. Let your life proceed by its own design...Cassidy.