Monday, July 13, 2015

My Contribution to the Art of Autism - Autism Unveiled 2015

It is not often that I feel comfortable talking about myself or my diagnosis in this blog. The words never seem to come out unless I am angry or somehow inspired and even then the words never seem to come out right. I gave up on finding comfort in sharing information about myself here and decided to create another blog where I thought I could feel more comfortable being me. Even there I still feel guarded and unsure.

Earlier this year I was invited to submit an artful way of sharing a little bit about my life and being on the spectrum. So I did and I attached an audio poem that brought certain negative aspects of my childhood to life.

The audio portion of my submission was written a year prior to the honor of participating in the actual event. Perhaps it needed to be created to release some of my demons...perhaps it needed to be created to share with the world...I don't know. I'm just glad that I did it and that I have the courage to share it.

I did not post the link to the event here when it was first published in January 2015. I'm not sure why I chose to wait so long nor am I sure why I feel the need to share it now.

My Contribution to the Art of Autism - Autism Unveiled

Saturday, June 27, 2015

Parent2Parent Tip #10.5 - In Case of Emergency Continued

I recently needed to update my son's Active Medication List and thought to add another valuable tidbit of information, so I wanted to give you guys a quick little note about the addition.

Hunt had a brief seizure episode, otherwise known as a spell, night before last. As usual I email the information to his neurologist. She emailed back to up his medicine a little. Okay, my first opportunity to update Hunt's Active Medication List.

After updating the medication information I turned my attention to the General Information section of the list where I talk about Hunt's demeanor and ability to answer questions. In this section I wanted to also include any issues or positives about previous ambulance experience, ability to tolerate having vitals checked and most important...his able to tolerate IV catheterization. It's facts like this that EMTs really appreciate knowing.

I hope the suggestion to post pertinent medical information in a safe place, in case of emergencies, is a useful one for you, if you have not already thought of it. As parents we don't often like to think about emergencies happening to ourselves or our kids. We're often times too busy juggling the hundred and one things we have to do in any given day. Taking the time to put forth a little thought and effort into preventative ideas or ways to lighten the load should an emergency occur will be very beneficial to us and our kids in the long run. 

Take care, be well and happy parenting :-)

Wednesday, June 24, 2015

Parent2Parent Tip #10: In Case of Emergency

In cases of emergency it seems that so many things are happening all at the same time. One can easily become overwhelmed. I learned a valuable lesson one night when my son had a seizure.

It was late. I was talking on the phone with a friend when I heard a large thud in my son's room. Immediately I got up to check on him. I found him lying on the ground unconscious having a full tonic clonic (grand mal) seizure. I took a mental note of the time, position he was found in and secured the area of any thing that could harm him before calling 911. I'm sitting next to my son, taking deep breaths. The dispatch person is asking question. I calmly answered and then asked the dispatch person to stay on the line with me. Almost 5 minutes have passed and my son is slowly starting to come out of the seizure. He's still not fully conscious, slipping in and out of sleep as I softly speak to him, reassuring him that he is okay and informing him that he had a seizure. The person on the other end of the phone listens quietly. When she spoke, she said I was a good mom. I thanked her.

The EMTs are due to arrive at any time. Moving quickly I go down the hall to open the front door and returned to my son's side. A few minutes later I heard a voice call out from the living room. I called them back to my son's room where he rests on his side on the floor. He is not stable enough to stand yet. Frazzled but remaining calm I engage in answer the EMTs questions. It seemed that questions were coming from all 4 corners of the room. It felt like I was in warp speed and moving in slow motion at the same time. It was a very strange sensation.
I could have saved myself a bit of a headache if I had the proper information posted and readily available in case of emergencies.

On my son's door I have the following information posted:

Date of Birth
Primary Diagnosis
Current Medications and Dosages
Preferred Hospital
Hospital Medical Record Number
General information  - Demeanor, Ability to Understand, Ability to answer questions, Ability to respond to requests, etc.
Next of Kin and contact information

In another location where I keep my son's medications, I have posted an additional listing of medications with dosage, times administered and frequency. This tid-bit will be needed if I am having an emergency and have to call someone to watch my son. That way while I'm gone, my friends will know what medications he needs to take and when.

No truer words have been spoken when they say hind sight is 20/20. Anyone of us can be caught off guard when facing an emergency. It comforting to know that I am better prepared having pertinent information readily available for those times.

You may want to think of a safe place to display your child(rens) pertinent medical information in case of emergencies. Then all you will have to do is direct medical staff/friend/family member to the location of the information. Be sure to keep this information up-to-date. Also have a laminated copy to place in suitcases or overnight bags when traveling. I would also encourage you to give a copy of this information to the school nurse or office personnel in case there is an emergency during school hours.

Saturday, June 20, 2015

If You Could, What Would You Say to Reduce the Harsh Reality of Stigma, Stereotype and Minsinformation of IDD?

"Stigma, stereotypes and misinformation follows individuals with intellectual and developmental disability. If you could remind other of one fact to reduce this harsh reality what would it be?"
Ezra Lockhart, MCSE, CT, AC

My response:

I cannot speak for all people on the spectrum. I can only speak for myself and by way of witness I can speak a little for my son. 

What comes to mind...

I am human...even though some of my mannerisms may differ from yours. That does not make me less human than you.

I am human...I have feelings and emotions even though you may not see them. I feel love, pain, sorrow, anger, frustration, warmth, comfort, empathy. I can feel emotions like you can, maybe even more so.

I am human...I may not be able to respond to you in a way you would consider normal, but I can respond. You just have to get to know me and you will understand.

I am human...I have a voice whether I am able to speak like you or not. Learn my language so you can hear me.

I am human...I have difficulty answering questions right away. Be patient with me.

I am human...I have the ability to learn if you have the patience to each me.

I am human...I want to be recognized for being who I am. I am so much more than a label. I am me. See me.

I am human...I am not a punishment. I am a gift. Your child. My life is precious and my love for you, infinite.


Wednesday, June 17, 2015

A Response to An Invitation to Share Advice to Parents of Newly Diagnosed Children

A Response to a LinkedIn Post, "“Fathers of older children with autism: What is one piece of advice you would give to fathers of newly diagnosed children?” Posted by Ezra Lockhart, MCSE, CT, AC 

Thank you Ezra Lockhart for extending your invitation to include Moms as well as Dads.

Ezra, the reason I decided to answer you from a post in my blog is simple. There is not enough space provided in LinkedIn. I realize you asked for one piece of advice, but there are so many thoughts and feelings that occurs when you first hear the words, "Your child is autistic." I simply could not narrow it down to one piece of advice. My apologies for my wordiness. I hope you don't mind that I created this post to share in your conversation.

1. Deal with your personal feelings about your child's diagnosis first.

2. Embrace your child know that they possess amazing qualities.

3. Focus on the whole child and not just the diagnosis.

4. Don't feel guilty for needing and wanting "me" time.

5. As you are figuring out which way to go with teachings and therapies for your child take time to think about what you need to occur to help maintain your sanity. In other words, if you need to say "time out" sometimes be sure to find ways to convey that message to your child. Create a dialog that they will become familiar with so they will no when you need a bit of a break. It may not always work, but it will work sometimes and even more as they become more familiar with the process.

6. Explanation, Expectation, and Exploration - These are what I call the 3 Exs. I use this method as a template for teaching my son anything and everything. As we are raising and teaching our autistic child(ren) we soon become aware of the differences in their learning process. Using the 3 Exs made teaching my son and transitioning him through changes smoother and more a pleasant experience.

Example 1: When teaching my son how to use a cup he saw that the cup was good for drinking but nothing else. I discovered early on that his pattern for learning was linear. So I decided to use pictures to show my son many different ways to use a cup (Explanation). The next time I showed him uses for a cup I asked him to point to pictures of different ways to use the cup. I gave him 3 choices all of which were correct answers. He chose 2, drinking and pouring (Expectation). Then I gave my son a cup and several manipulatives like rubber animals, rubber balls, blocks, fat pencil, play dough, etc. Holding up a picture and showing him hand over hand how to drink form the cup, pour from the cup, place different objects into the cup, taking objects out of the cup, using the cup as a mold or roller and tapping the cup on the sides and bottom (Exploration). Once this is done I worked with him on how to appropriately utilize his new knowledge. All of this took time. Several months to be exact, but he has a clear image of the many different ways he can use a cup. Not only does he apply this process to using a cup, but it is so engrained that he explores the uses of almost every objects he encounters. Sometimes it can be quite interesting to see what he comes up with.

Example 2: Using the 3 Ex method is also helpful when transitioning a child into change. It is very easy for an autistic child to get locked into routine. On one hand this is good, but on the other hand it could lead to great difficulty when change has to occur like transitioning from school to staying at home or engaging in other activities during summer months and holiday breaks. Using story boards and picture cards are a great way to give visual and verbal explanations about events that will soon take place. It helps also to create a picture calendar showing the child a countdown of days to a particular event. As you are counting down to the event developing much needed expectation also slowly incorporate a small selection of activities that your child enjoys to do once the transition occurs. Allow/assist the child to place the picture cards of different activities on days that they would like to do the activity once school is over.

Whether you realize it or not you are providing a global education to the child. You are teaching them the days of the week, how to count, colors, expectation, positive anticipation and exploration of the possibilities to come. Not only have you provided cognitive stimulation you have provided what your child needs to move out of one norm into a new norm. The same process works well as you transition them back into school time.

Allowing your child to select and plan activities also provides as sense of ownership of what happens next. Positive anticipation is a great way to boost confidence. 

7. Sometimes children can develop annoying habits like tearing paper. Don't get upset. Simply show them items that you consider appropriate to tear for a better use like creating mosaic pictures. Be creative when problem solving.

8. I could go all day, but I will only add one other thing. Parents, don't forget each others needs.
        Be supportive of one another.
        No one is to blame.
        Remember that you are in this together.
        Check-in with each other throughout the day if for no other reason than to say, "How are you
        doing", "We will get through this together" and "I love you."

Tuesday, April 7, 2015

The Truth Behind Autism Acceptance

As I was perusing facebook today I noticed that a friend tagged me in one of her posts. You can see the picture just above. It seems to reign true for many who see this picture. I've already read many comments on plans to purchase this shirt.

I think this is a lovely sentiment, but I am a bit confused. This is Autism Awareness month. This is the month were we concentrate the most effort to increase autism awareness around the world. Okay, I get that. What I don't understand is how we can pray for world acceptance and in the same breath ask for encouragement to take our children out in public..."anyway." That does not come across as acceptance to me. What it sounds like to me is that we should be praying for parents to have more acceptance of their autistic child(ren) so that they do not feel ashamed when taking their child(ren) out in public places.

Acceptance begins in the home.

Think about it... If we globally accept our children just as they are and show the world that we are not "bothered" by peoples reactions to our children's behaviors then we are more likely to find that other people become less bothered as well. When they see that the family is having fun and enjoying life people tend to join in. However, if they see shame, fear, degradation, if the world sees disgust and an inability to cope with taking our autistic child(ren) into public places then how on earth do we expect them to find acceptance? Who wants to accept something that appears to be so difficult even painful? Has anyone ever thought about that?!

Autism Awareness Month...Let's start by showing the world how much we love our child(ren) and that we are NOT ashamed.