Friday, January 29, 2010

Friday Fever

Today was supposed to be therapy day. Noah was scheduled for his usual speech, OT and PT. Unfortunately, the fever is persisting and we had to cancel all three for the second Friday in a row. Unless we keep him pumped full of Motrin and Tylenol, Noah's temperature hovers betwen 101 and 103. This has been going on for over a week. He has had one or two days without a fever and then the fever returns. Not sure what is going on. The fevers and ear pain are supposedly the result of mastoiditis. We are on our second round of antibiotic/steroid ear drops and our first round of oral antibiotics. I hope they do the trick soon because Noah looks and feels just plain miserable.

Noah playing video games and looking sick

Thursday, January 28, 2010

Noah on TV and Feeling Better

A local news station airs an exclusive series called "The Autism Puzzle". The series features stories about children and adults living with autism and the resources available for people on the autism spectrum. The series was started by the sports anchor, whose two sons are both diagnosed with autism. A few weeks ago, he came and filmed our support group. He wanted to do a story about the wonderful woman who started it. Seriously, this woman is great and this support group is just a huge blessing. The story was very well done and he managed to film all of the kids that were present....including Noah! So here is Noah's television debut.

Noah missed school yesterday because of a fever of 102 and as he says it a "broken ear". We went to the pediatrician last week for the same reason, but he didn't really see anything wrong. Yesterday, his pediatrician decided that Noah probably has mastoiditis. That is why Noah's ear has been hurting so much without the pediatrician seeing any infection in the ear itself. He made it back to school today and did really well. He didn't even cry when I dropped him off. This makes 3 days without a single incident report!! Yippee!!

****UPDATE: 7:30 pm**** Okay, I spoke too soon. Noah just spiked a fever of 103.4.....jeesh!

Tuesday, January 26, 2010

The Last Year in Pictures!

Noah started wearing glasses in February.

First Easter Egg Hunt

Discovered a love of Blue Moo Cookie Dough Ice Cream

First Solo Amusement Park Ride!

First (and hopefully only) EEG!

Turned 3!

Now that 2010 is here, I will try to blog more!!

Testing Results

(This was originally posted on my MySpace blog back in April)

Okay, I think that I have finally come to terms with the results of Noah’s psychological testing results. I think that I have spent the last couple of months pretending that they were wrong or something, but I guess I just need to face the truth of what autism has done to my child. So, here are Noah’s results.

On the Mullen Scales of Early Learning – AGS Edition, Noah scored the following:

Visual Reception– 23 months (at or above age level)
This is very similar to an IQ type of test in that it measures cognitive and problem-solving abilities.

Fine Motor – 22 months (1 month behind)
Noah has been doing Occupational Therapy to help with this for about 6 months and this shows that it has helped tremendously.

Receptive Language – 17 months (6 months behind)
This measures how well Noah understands what is being said to him, follows directions, etc. This is AFTER almost 6 months of speech therapy. This one was a little disheartening.

Expressive Language – 16 months (7 months behind)
This measures how well Noah expresses himself through language. Again, this is AFTER 6 months of speech therapy. I was disappointed with this one as well.

Noah’s overall level of developmental functioning is considered to be borderline because he has age-appropriate visual perception, fine motor and problem-solving skills, but significant delays in receptive and expressive language.

One of the other tests, Scales of Independent Behavior, measured Noah’s overall level of developmental functioning. (This includes motor skill, social communication, personal living, and community living skills.) This test placed Noah in the Limited Range compared to others his age. Also, his Adaptive Behaviors (dressing himself, talking, walking, a person’s ability to adapt to his/her environment) are in the Limited to Very Limited Range compared to others his age.

Simply put, Noah is NOT functioning as well as he should be given his intellectual and early developmental skills.

This is what the last paragraph of the report says,

“Based on the data collected during the course of this evaluation as well as direct observation of Noah, there is enough evidence to support the presence of an Autism Spectrum Disorder at this time. Noah’s eye contact, response to name and response to other social overtures is notably poor. He initiates very little social interactions and does not respond reciprocally to social overtures. Noah is also noted to engage in a high level of repetitive behavior and visual inspection of objects especially when he is not being interacted with directly.”

The report also mentions words like Special Education, curriculum modifications, environmental modifications, behavioral management strategies, structured environment, limited punitive feedback, etc., etc.


I have to admit that when I first read the report, I was kind of crushed and overwhelmed. What did all this mean for Noah and his future? I’m still not sure, but I do know that Noah has come a LONG way since these tests were done. All we can do is hope that Noah continues to improve and we continue to make the best decisions for Noah’s future.

Feedback Session

Noah had his testing on November 24, 2008 and he was a champ! He had no meltdowns and finished in 1 1/2 hours! We met with the psychologist on December 15 for a feedback session. This is what we were told.

Autism is described in two different ways.
1) How severely does the disorder affect the person's everday life? (mild, moderate, severe)

2) How well does the person function cognitively? (low-functioning, high-functioning)

Here is what they have determined for Noah at this time (this could change)....Noah is considered to have mild-moderate, high-functioning autistim. Noah is very smart, but he has some issues with behavior and communication.

The recommendation from the Autism Center was to continue Speech, Occupational Therapy, Help Me Grow, and Early Intervention classes. They also suggested adding ABA Therapy, but this really isn't available in our area so we didn't. They also suggested joining a support group and attending some classes that they offer about autism and related topics.

A few days later, we received Noah's test results.

The Second Opinion

Just a few days after Noah's appointment in Akron, we received a call from the Center for Autism Spectrum Disorders in Westerville. We had been waiting for an evaluation appointment with them since May. I couldn't believe that we finally heard from them. We decided that we would go ahead and get a second opinion since Noah's insurance would cover the cost. This appointment was very different from the appointment in Akron. We went down there and met with a child psychologist, a developmental behavior pediatrician, a case worker, and a psychometrician. They observed Noah, did a physical, interviewed me and daddy, and many other things. The appointment lasted about 2 1/2 hours.

The doctors there basically came to the same conclusion that Akron did, but with one difference. The only difference is that the pediatrician in Westerville doesn't think that it is necessary to sedate Noah and do an MRI unless we want them to. I was never really comfortable with having the MRI anyways, so I am happy about that. They scheduled Noah for an appointment on November 24th for a 4-hour testing/evaluation session to determine his strengths/weaknesses and cognitive level. Let me say that this place was great! I loved everyone there. We were given so much information and helpful advice.

I think that I have finally come to grips with the fact that Noah has Autism. Up until now, I have talked about it as if it were somebody else's child. Almost as if I was on the outside watching it happen. After two evaluations, numerous doctors and therapists, and my own observations, there is no doubt that Noah is autistic. Now I need to focus on what can be done to help him achieve what he is capable of achieving.

The First Opinion

After being told that we may have to wait a year for Noah to be assessed at the Autism Center, we decided to see if we could get Noah in somewhere else quicker. The only other real option was Akron Children's Hospital. The problem with Akron was that they weren't in our network. We decided that if we had to, we would just pay in cash. (We didn't know about BCMH at the time, but found out at the appointment. Luckily, BCMH paid for the visit.) We called Akron and found out that Noah may be able to get an appointment in just a couple months. We filled out all the paperwork and mailed it back. They called shortly after and set his appointment for October 20. Finally, we were going to find out what was wrong with Noah.

On October 20th, we headed up to Akron. His appointment was with a developmental pediatrician. She was really nice. We brought tons of info with us. Videos of Noah, copies of test results, evaluations. She looked over all the test results from Dr. H and all the other paperwork. She asked us some questions. She observed Noah and watched the video footage. She performed the M-CHAT and CARS evaluations on him. After she was done, she looked at us and said, "He has autism. Continue speech and occupational therapy. I'll refer you to the feeding clinic and schedule an MRI becaus of the hypotonia. Bring him back in 3 months. There really isn't anything else to do until he turns 3. Then we can look at other therapies" Wow! She also mentioned things like PECS and communication devices...etc. Okay, this appointment left me feeling a little overwhelmed and underwhelmed at the same time. I was glad we had a diagnosis, but I felt kind of let down. I guess I expected some ideas for helping Noah with his behavior or maybe some more detailed information as to where he was developmentally. I don't know. Maybe I wa asking too much.

Sinking Suspicions

In May, Noah had an appointment with his pediatrician. During the appointment, Noah spent most of his time feeling the texture on the walls and spinning the tires of a toy truck. We asked Dr. H if this was normal for a 15-month-old. We also expressed our concern that Noah was not responding to his name. Dr. H looked at us and said, "I've suspected something since I first met Noah. Do you care if I check a few things?" Of course we didn't mind! He left the room and returned with some blocks, a doll baby, and a few other things. He tried to get Noah to imitate him and stack blocks. Noah was not interested at all. Noah did, however, show enough interest in the doll to pick it up and throw it on the floor. Dr. H also called Noah's name to see if he would respond, but Noah only responded when Dr. H tapped him on the shoulder.

After he had finished, Dr. H looked at us and said, "I think Noah has a form of autism called PDD:NOS. Don't worry. It's not a death sentence. I have a form of autism myself called Aspberger's. We'll start therapy, get a formal diagnosis, and he will make progress." Dr. H set Noah up for a hearing test, a Speech evaluation, an Occupational therapy evaluation and told us to get in touch with our local Early Intervention Program, Help Me Grow. He also had Noah tested for all sorts of things. He tested him for Fragile X, food allergies, and stuff like that.

Within a month, Noah had passed his hearing test, was having weekly speech and occupational therapy and had a case manager through the Help Me Grow program. I think I was in some form of denial. When I spoke about the possibility that Noah may have autism, it was as if I was speaking of someone else's child. I remember also thinking that Noah was too affectionate, too social to have autism. It didn't help matters that most of the people involved with Noah didn't think he was autistic either. We were on a waiting list for an assessment at the Autism Center through Nationwide Children's. They said it could take 6 months to a year! I wanted, no I needed to know, now.

On a side note, we also discovered from the bloodwork that:

(1) Noah does not have Fragile X;
(2) Noah has an IGG allergy to casein;
(3) Noah had low Zinc, IGG, and Iron; and
(4) Noah has an extremely high amount of B12 in his system (the theory that Dr. H has is that Noah's body does not convert B-12 into Methyl B-12).

We started Noah on supplements for everything and took him off of dairy.