Thursday, February 10, 2011


I was talking to my sister about what I should do with JT since he will be going into kindergarten in August. I was talking about how I just want him to be able to make a good first impression with the kids he will spend the rest of his school life with. I am worried that he will be labeled and even if he becomes better equipped in a year or two, they won't except him because of first impressions. Other kids can be so mean. Then my sister reminded me of someone she used to know. She told me the story before but now as a mom, especially a mom of JT, I appreciate it more.

My sister grew up with Wes. He was popular in elementary because he was nice to everyone. He was popular in junior high because he was nice to everyone. Nice doesn't do the boy justice. He truly loved everyone.

Eighth grade is rough, kids pushing to find their place, not wanting to stand out too much or be seen with the wrong person. In their 8th grade class, there was a girl, we'll call her Sarah. My sister didn't know this girls exact diagnosis but Sarah was mentally disabled. Sarah told EVERYONE that Wes was her boyfriend. She loved him. He never shied away from her or even corrected her. He was always good natured about it.

In 8th grade there was only one dance the whole year, the Valentine's Dance. Wes asked Sarah to go with him. She wore a pretty dress, he bought her flowers. That night she spent the whole night with the popular kids, dancing and having fun.

We have since moved so we do not know Wes anymore. But from now on he will be someone who gives me hope. Hope that no matter what the future holds, there will be good kids who will love my son even if he is different. And Sarah gives me hope, hope that no matter what the future holds, my son will be that outgoing, that self-confident.

I still am not sure about when JT will be mainstreamed but maybe he will find his "Wes". Please let there be kids like Wes for our children....

Sunday, February 6, 2011

The PDD-NOS life

Hi Everyone,

We created our site to share our experiences and found this awesome site. So thanks for allowing us to post and share our experiences. We are a family of five, our daughter is 5, middle son is 3 and then our youngest is 16 months. We are in SLC, UT. Our 3 year-old boy Cohen was diagnosed with PDD-NOS several months ago. This poor kid, he's been through the ringer. He's been to the hospital at least 8 times either for RSV or something else. His first 18 months he had reflux real bad. He's got asthma which makes a flu even worse, I suppose if we knew about his asthma we would have been able to stay out of the hospital. Our daughter also has asthma.

We started noticing signs early on but were a little hesitant to get him checked out, kind of a denial phase. We thought his hearing was lost because I could yell at him six inches from his ear and nothing would happened. Come to find out he had a lot of fluid built up and needed his tubes redone. This was done about a year ago. After having his tubes fixed and his abnoids taken out he was a changed boy. But he still didn't progress in talking. He was also a late walker which is the same with our youngest.

Throughout his life Cohen would not eat well. After his reflux he would live on milk. It was about six to eight months ago that he has started to eat better but we are still a ways from normal. The doctors said that he has a lot of sensory issues. So after several doctors appointments they diagnosed him with PDD-NOS. So we met with the school district and the Early Intervention program was able to start with him. His appointments were always pretty good but his progression was slow. If he were to learn a new word, there is know way he would repeat it later, which I guess is one of the symptoms of PDD-NOS, so although they were good it is always a little depressing.

We received the Tullips letter from a lady that my wife visited with about Cohen and that really hit home for us. Some days we are good with his condition and other days its rough. He is such a darling boy.

Well, there is a start to our life right now. We have a website called, check it out. Hope everyone enjoys the Super Bowl. I doubt the kids will let me watch it.

Thursday, February 3, 2011

JT and me, the last little while

Life is crazy nowadays. Going to school, applying for the OT program at U of U, keeping up the house, trying to keep JT going in the right direction with therapy etc. But things are going pretty well.

JT is as fun as ever. He may not be able to speak but he has learned how to have a conversation anyway. One day my husband was watching Top Gear America (car show, we like the UK version better though) and JT kept up this generalized whine. I asked him to stop whining and tell me what was wrong. He pointed to the TV then made a disgusted face and shook his head. My husband and I couldn't stop laughing. He will find any way to get his point across.

It was lunch time and JT got out the cereal. I told him no and put it back. He took it out, I put it up higher. Then he came back with his PECS book. He had put on "I want cereal" and then at the very end he had added "cookie" too. I guess if you can't get cereal, cookies will do too.

We are moving into a lot of fun new stuff. We are having someone meet him to hopefully help us find something to help him communicate with the world. He goes in for his first IQ test on Monday. (I think I am actually ready. I hope I can take the numbers and if they are high, be happy, and if they are low, say, "I don't believe it, my son is smart no matter what you say") He is starting supplementary speech therapy this week. So we are busy but it is a good thing.

In good news, the doctors have decided that JT will be able to have 2 years between MRIs now. Also, he only has to see his Rehab therapist every 6 months although I am pretty sure this will change because although the Baclofen was working really, well I think he is tightening back up. The dentist says his teeth and gums look good (our first dentist check up, late I know). Amazingly, he still has his front teeth (he kept falling this year and smashing them in) but if he doesn't loose at least one in the next month I will drop dead of surprise.

This semester in BioMed we have spent the last month on the brain. After learning, in detail, about everything the brain does and what different parts of the cerebral cortex do I feel like getting on top of a building and shouting, "MY SON IS AMAZING! YOU PEOPLE HAVE NO IDEA!! HE IS A MIRACLE!!" There is no way he should be doing everything he is doing. Even if he never speaks, he is a miracle. How is he able to do anything? He is missing more than half of his brain!! This shouldn't be possible. He is so funny, he is so creative in getting what he wants and communicating, he can walk, he has some fine motor skills, he understands when I talk to him, who could ask for anything more?

So all in all, we are doing really well. I need to write more. I hope you all are doing well!

catch up.

My Goodness, it's been such a long time since I posted anything here. Like many of you - I've decided to go back to school. I'm busier now than I should be and too many things are falling through the cracks. I thought I ought to post a little update any way. So many things have been going on...

Last time I posted I mentioned the issues we were having trying to get MK's walker. We ditched Alpine and went through IHC (The Wheelchair Shop) And they have been wonderful. I've had someone from IHC calling me every few weeks to let me know how things are progressing. At this point, we are just waiting for the walker to come in from Rifton. I expect it any day and we're so excited. What Alpine couldn't do in a whole year - IHC has been able to do in just a couple months. The funny thing is that MK is doing really good with her walking now. She's able to control it better and go further distances. It's so exciting to see, and gives me so much hope.
Our baby is now 13 months old and walking too. They practice together. I'm so glad the baby didn't pass her up. But my heart hurts thinking about the day when she most definitely will.

Our last check up with the docs at Primary Children's was also very good. Because MK is doing so well with her walking, she was able to graduate from wearing DAFOs. Hooray! Just when I thought we were going to be able to go shopping for cute girly shoes - they want her to wear little 'construction' boots to support her ankles. :) I'm still not complaining!

She is really enjoying the free dance class at Dance Image in Hooper. They are so good with all the little girls there, and it seems to be helping her movement too - just by trying to move in different ways. Not to mention the fact that she absolutely loves dressing up in frilly little dance clothes.

Hope you all are doing well.
Tiptoe Mama