Wednesday, February 2, 2011

DIY Kids Valentine's Day Photo Cards

I just love these handcrafted Valentine's Day Photo Cards I made last year for my son. They are so easy and cute!

You take a picture of your child with their arm stretched out with their hand in a fist. Then add a little Valentine greeting in your photo program. After making the prints, cut small holes at the top and bottom of the hand and insert the lollipop. So cute!

I attached them to a bag of chocolates for the teachers.

Monday, January 17, 2011

Potty Training A Child With Disabilities

I am not sure it should be called potty training when you are trying to train a 15 year old to use the toilet, but it is one and the same. It is hard to use more adult words when you are dealing with a child who stills sees the world in simple terms.

I never thought I would be able to get my son to understand the concept of toilet training, but with persistence somehow he grasped the concept. That and many years of working on it with consistency. My frustration these days comes from the fact that my son now understands the concept, but refuses to do it. I have never found anything so frustrating in my life.

After three years he absolutely refuses to sit on the toilet and go. He has had much success with praise for the past year and a half. Now, even if I get him on the toilet, the second he gets the urge to go - he lunges off and onto the floor. Then I put a diaper on him and he relieves himself there. It is insane...some days I can hardly stand it! What am I to do?!

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Tuesday, January 4, 2011

Risperdal Side Effects - Behavior and Medication

My son has been on the medication Risperdal now for a year and a half. The first six months it was a very low and ineffective dose. He has always had issues with behavior. Throw puberty into the mix and the behaviors elevated to a whole other level. Things in our home were literally unbearable. It was so bad I can barely write about it. This situation goes back around a year ago.
We so desperately needed help as it seemed life was falling apart. I do remember leaving a message at the doctor’s office and I could hardly get the words out - I was breaking down with so much emotion. Finally we got into see a psychiatrist in January. Diagnosed with PPD the clear solution was to increase the Risperdal as it is a widely used medication for the Autism Spectrum Disorder. It’s safe and effect - right?!

For about four months we slowly began to increase the drug getting our son to a middle level dose. Personally, I didn’t see much change and even today wonder if it was doing much for him at all. The drug that had the biggest impact was Zoloft. Within a couple of weeks I saw a calm come over him. It was a refreshing change and we were able to find a little peace at home.
We took things slow from there - not increasing much more. I never really wanted to drug him at all. As summer was ending he seemed a little more agitated so we did another small increase of both drugs. Within two weeks I started to see my son’s hand curling at the wrist. Pretty soon his fingers were curling and he was holding his arm curled up with his hand to his ear. I knew from the first day I saw this that something was wrong. I consulted with several doctors about what was going on, including the doctor that prescribed the Risperdal. Not one of them thought that it could be a side effect to any of his medications.

I was persistent in my search for an answer and asked my pharmacist. She came back to me with the possibility of Tardive Dyskinesia. (TD) is a serious, sometimes permanent side effect reported with RISPERDAL ® and similar medications. TD includes uncontrollable movements of the face, tongue, and other parts of the body. The risk of developing TD and the chance that it will become permanent is thought to increase with the length of therapy and the overall dose taken by the patient. This condition can develop after a brief period of therapy at low doses, although this is much less common. There is no known treatment for TD, but it may go away partially or completely if therapy is stopped. This information can be found on the Risperdal web site. I immediately went back to the psychiatrist where she confirmed this was the problem. Don’t you love that it says - these symptoms may or may not go away when the medication is stopped. I am still beside myself!

We are currently still reducing this medication. I will never understand how such a serious side effect can go on without someone making the connection with this drug. It is so widely used and effective for many kids, but I would seriously think twice before using it or any other drug that might cause this side effect. One additional side effect that occurred for our son was excessive drooling.

We are still dealing with some extreme behaviors. At this time I am unsure what our next step in dealing with will be. We do ongoing therapies with little success.

Especially for kids network

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!