Monday, December 27, 2010

Especially For Kids - A New Social Sharing Site

Especially for kids network

I wanted to share something I have been working on. Without a is a challenge. I have great support from family and friends, but find that it often feels good to connect with other parents experiencing the same things. This is why I created the Especially for Kids Network.

It is a social network for families and friends who share that same common bond - a child with disabilities. I hope that if you or someone you know could benefit with this type of support - you will connect them to the Network. There will be a link button on the sidebar of this blog to navigate to the Especially for Kids Network.

Monday, September 27, 2010

Functional Feeding Program - week 3

I am just back from spending the day with son. He has been living at the facility where he is receiving intensive therapies for feeding. He receives around 5 1/2 hour sessions a day with an OT and Speech therapist. Things have gone slow the first two weeks. He has multiple disabilities and does not really understand what is going on. He is also very defensive especially in and around the mouth.

I am a bit disappointed there has not been more progress. I really hoped this would move him to a better functional feeding level. His issues have been self feeding, biting and chewing food and difficulties with increased texture. His diet has mostly been pureed for most of his life. Now at the age of 14 I feel he should be moving on to be more dependant with eating. I don't think this is going to happen.

The team will evaluate his progress at the end of the week to see if he would be better off in an out-patient environment. The in-patient environment is very hospital like.

Wednesday, September 22, 2010

Feeding Program

I was planning to share our experience while my son attends an in-patient feeding program. Here we are 10 days into it and I have not posted. For one thing it is exhausting driving about an hour each way everyday to see him.

He has a lot of oral defensiveness and mostly eats a pureed diet. At the age of 14 I thought I would give it one more try to advance his feeding ability. I am not sure it can be done as he is not very receptive to allowing people put things in his mouth. One of the biggest things I am hoping to achieve is biting and chewing food.

More to come as I know there are many out there with this challenge.

Monday, August 2, 2010

Enjoying The Boating Life

I Heart Faces is having a Random Acts Of Kindness link today. This blog is really about my struggles with raising a child with disabilities. A big struggle for us is experiencing and enjoying life as other families do. With the issues of behavior, the inability to wait and lack of formal communication - the ability to go out and have fun and enjoy life has been a challenge.

This past weekend friends invited us to their lake house for relaxation and boating fun. My first response was not to go. My son is obsessed with being on a boat, movement and large bodies of water - I know this sounds weird. The bigest problem it is not so much being on the boat, but getting off the boat when we are finished. Transitioning is not easy for my guy.

The act of kindness came from our friend for spending endless hours on the lake riding us around on his boat. My favorite moment was when he took him on his lap to help steer the boat!

All in all we had a great time. There were a few moment of distress for my son, but the joy he experience for the day was wonderful. I was glad we decided to go. I can't say it was relaxing as I always feel on edge anticipating when it will all fall a part.

Here is what was going on behind the boat.

Hanging on for dear life!

Wednesday, May 19, 2010

If Only I Could Fix His Brain

My son loves when I hug him and kiss him on the head. He looks at me with such love in his little face. He is only 4'1" and I am only 5' so it is easy for me to do as I hug him. He is definitely a snugly guy.

I remember when he was much younger...when I would hold him...I would hold his little head in my hands wishing I could fix his brain. If only I could correct what went wrong with his brain as he was developing - he would be okay. He is a beautiful child. Perfect in every way...if only I could fix his brain. We still love him just the way he is!

Saturday, April 24, 2010

I am done talking about my son!

I have had and endless week talking about my son. Analyzing every behavior problem he has. Why he does the things he does, what cause the behaviors and how do we stop them. It can be so draining. So here is a week in review.

Monday I met with the psychologist - we decided due to certain OCD behaviors we would raise the Zoloft. This, however, can cause behavior problems - great!

Tuesday we went to feeding therapy - talked about the foods he has been eating, the utensils and food textures.

Wednesday went for a second opinion. I thought we were meeting with a psychologist, but he was just a councilor. He determines if we need to see a doctor (we did) and scheduled us another appointment in June! What did we learn today - we are not alone, behaviors come and go and there is no magic pill.

Thursday - a free day, so I played golf!

Friday - he had a half day of school and a therapist came to my house. We discussed the behaviors of the past week with no solutions.

Saturday - another therapist - and again we discussed the behaviors and went out and worked on community activities.

Thank goodness it is Sunday and I don't have to discuss anything!

Unfortunately, some of these things will repeat week after week. Sometimes I wish we could be left alone. It's exhausting.

Sunday, February 21, 2010

Daily Life

As I struggle daily with raising this child, in my mind I know that everyone has some kind of struggle in their lives. Most of the time they mask the troubles well, but like me when they are at home it is all plain to see. We must be strong for ourselves so we can face these emotions and go on day to day. I love my son more than life itself, but his care is grueling...somehow I (we) find the strength to get up every day and move on with our lives. I am a person who looks at life with my glass half full....this has to come from within.

Sunday, January 3, 2010

Hooray The Holiday's Are Over

Who thinks kids need to be off for two weeks during the winter? This break seemed particularly long...maybe because my guy was more difficult. Having a child with disabilities with limited interest, skills and behavior problems is hard to entertain for two weeks. It is bitter cold least in the summer there are outside activities to fill our days. These weeks were difficult and made me feel sad. He couldn't even make it through Christmas dinner at my aunt's house. My guy lasted about ten minutes because he wanted to go outside and walk the city during the summer. My husband took him home screaming and had to drive back across town to pick us up...Happy Holiday's!

Friday, January 1, 2010

Head Banging

I find it hard to find time to write on this blog. It is hard from a time standpoint as well as's difficult. I think if I just type a few lines about the good or bad part of the day it might be a little easier.

So here is the bad...what possesses a child to intentionally bang his head out of frustration? Every bang intentionally hurting himself...then crying and continuing. Trying to stop him is even difficult. I don't get it...stopping this pattern seems impossible.

The good part of the day...I was able to sit with my daughter and peacefully watch the movie Julie & Julia. We both loved it!