Waiting By The Window

Dear Dad:

You always seem to understand my frustration. Not one time did you holler at me or ridicule me for my clumsiness when you took me out to play football. It never appeared to bother you that I had the worst coordination in the world. When I did not make the play, you never stopped encouraging me. I loved it when you would toss me up in the air and say,”You are my champion.” Even when I violated your space, you would laugh and call me your SPACE INVADER. You would go get the tape measure and you would show me where I should stand to keep from violating other people’s personal space.

When it was time to clean my room, you always gave me a heads up on where I should start first. I loved the saying, “We will build one skill at a TIME.” It was funny how I was sitting in the middle of the floor and you walked into the room and sat beside me. I looked at you and you looked at me and we both started laughing. Dad, I was so glad you didn’t get angry because 2 hours had passed and the room was totaled. You told me I just needed a jumpstart like a battery. The sticky notes helped so much. You only listed 5 items for me to do. Once I had learned those tasks, you would slowly add a new task. I figured I was making progress. I was so excited to see another task added on. It seemed like it took forever but Dad, you waited for me to get it.

I remember when we went to our favorite eating place and you leaned over and told me I had my shirt on backward. The look on your face was priceless when I told you they make shirts that look like they are inside out. I bought the shirt for a strategy so people would think I was keeping up with the trend. Concept formation is hard for me and this was one way of my dealing with putting my clothes on backward. Whenever we would go shopping, we would buy shirts with the decals on the front so I would know if my shirt was on right. The wristband you had made at the jeweler was a good way for helping me determine my right from my left. I love the engraving on it… “This is my right-hand man.”

Dad, you made me feel like I was Paula Dean’s son in the kitchen. You took the initiative to buy me all those gadgets from Bed, Bath, and Beyond. I had an apple slicer, Nicer Dicer, Instant Chopper, and One Step Can Opener… any contraption that would keep me from severing my fingers or accidentally slicing my wrist. You would tease me and say, “Son we don’t want people to think you tried to commit SIDEWAYS in the kitchen.” I thought it was hilarious when I almost cut my finger off and you looked over at the pot of spaghetti and then looked at me said, “Want to go to dinner because I’m eating no fingers today.”

We had candles of every scent, fountains, and I couldn’t walk through the house without my feet landing on a different type of rug or carpet. Every time my feet hit the carpet or rug it brought so much ease to my body. At night my room looked like a church cathedral or it felt like a spa with the fountains. I loved the swivel chairs in my room. I had such a hard TIME getting to sleep. When you would bring me the hot chamomile tea it wouldn’t be long before it was lights out for the night.

I love the MAD-O-Meter you placed on my door. Before I would escalate you would walk me over to the MAD-O-Meter and have me point to the color. We would discuss if I wasn’t too angry what happened to cause the problem or the chain of events that led up to my trip to ANGER LAND. If I was too ANGRY, you would bring me the apple cinnamon tea, and say it was BREW TIME. I would sit and BREW because I took everything literally. It really did help me to calm down.

Wow! Dad, you had so many strategies and coping skills for me. I hope I can accommodate you like you accommodated me. We both were unprepared for this. I am so afraid for you. The doctors have talked to me several TIMES about your stroke. Putting the pieces of the puzzle together is so hard for me. Too bad Mom is not here to help me get through this. I didn’t realize that she has been dead for 7 years. Here I am in this place looking through this glass window. You look so helpless and weak. Can you hear me, DAD? I know I am not NURSE BETTY but I will try my best. We can do this DAD. I can’t lose you too.

You even trained people through the years if anything were to happen to you I would have another GRAND GUARDIAN in place. I don’t want another Grand Guardian. I need you, DAD. No matter how long it takes I will be sitting here WAITING BY THE WINDOW for your recovery. Mom is watching over us today. I will ask her and GOD to go in their conference chambers and work something out for me and you to spend a little more TIME together. I LOVE YOU DAD. You have been a good father to me.

Dedicated: This is dedicated to all the FATHERS who have broken the cycle from being the absentee DAD and have shown true dedication to their children no matter what the circumstances are. To all my NLDERS the strategies and coping skills mentioned in this letter can be very beneficial. Turn on your QUIET STORM MUSIC and RELAX WITH YOUR WARM FUZZY BLANKET and PLAY IT TO THE TUNE OF GUY__LET’S CHILL. IN RECOGNITION OF NLD SYNDROME NOW.

Getting Zach on the Right Track

Scene:  Sparky SPD (representing sensory processing disorder) and Nicky NLD (representing nonverbal learning disability) visit OWN Studio to help a friend get on the DSM5.  Zach is having extreme behavioral problems. Sparky SPD and Nicky NLD came to visit Oprah to see how they can help an old friend out. The conversation takes place in the green room and Oprah has stepped out for a studio break.

Nicky NLD:

Sparky sit down.  Stop touching everything. You are going to get us thrown out of the studio. I knew when I came here with you it was a bad idea. What did you have to eat?  You are all jacked up. Did you eat anything with sugar in it?  Put that down. You are on sensory overload.  Don’t make me call 1-800-Jesus Christ on you.

Sparky SPD:

Chill Nicky, Oprah won’t mind if we help ourselves and take a few souvenirs.

Nicky NLD:

Oprah has a deadline to meet and we are here to help get sensory processing disorder on the list.

Sparky SPD:

You are not on the list either.  As I recall you are not on the American Psychiatric Association (APA) list nor the International Classification of Diseases (ICD) list.  Are you on the Center for Disease Control for prevention list?

Nicky NLD:

No, I am not on any of those lists. Isolation is terrible and no recognition is even worse.  There is no validation and this could hang us out to dry. The APA is trying to throw Aspergers off the list and merge it with PDD-NOS. You know that diagnosis is just not enough of anything to rate being on the list.  If Aspergers vanishes we will not make the DSM5.

Sparky SPD:

Are you serious?

Nicky NLD:

I’m way more serious than Sally Savant “splinter skills”.

Sparky SPD:

What are splinter skills?

Nicky NLD:

Splinter skills are very unique skills that a person has that are totally unrelated to their life but they do them exceptionally well. Savants are noted for these skills. There are so many skills that savants can’t achieve but they should always be recognized and respected for what they can do. No one should ever take any credit away from a person who can achieve the smallest tasks. It messes with a persons self-esteem and self-confidence. For many years, not making the list has done the same to me. I am treated totally different from state agencies, insurance companies, schools and their districts.

Sparky NLD:

Nicky, I was reading your tweets and I did not know we had all that in common.

Nicky NLD:

I spelled it out. As long as people point it out or spell it out for me I don’t get so frustrated.  It was about 30 tweets. I gave brief definitions of some of the disorders. I did not want to cause confusion because a few of the disorders get mixed up. Sparky we share and have difficulty in the following areas: hypersensitivity, apraxia, dysgraphia, fine motor, severe coordination, hypotonia, developmental delays, developing friendships and relationships (social domain), self-esteem, self-confidence, speech and language development, dyspraxia and our nervous system is wrecked.

Sparky SPD:

Are you sure we don’t have the same Dad? We’ve got so much in common. You know I always liked the song Papa Was A Rolling Stone by the Temptations.

Nicky NLD:

Okay Sparky, shorty by nature, don’t make me mad. People don’t realize that when I get angry it could be for something that happened 2 or 3 days ago. It could be something that happened for 3 or 4 years ago or even longer. The doctors call it a manifestation of one’s behavior. I call it being pissed off for a very long time.

Sparky SPD:

What strategy do you use to keep from going ballistic?

Nicky NLD:

You need to go process with a person that you can trust – like a doctor or a therapist.

Sparky SPD:

I can get pretty angry.

Nicky NLD:

That is the best time to go to your doctor.  They can help level you out by talking it out. If you don’t want to talk you can look at the ceiling. If it is your doctor or therapist you are going to pay them regardless.  You might as well talk.

Sparky SPD:

I need a safe area like you. I use to think that your mom was a decorator. When you told me she put those rooms together to calm you down that was really cool.  I love the fountains, candles and the easy colors she chose to make it like a spa. Why did your mom take the doors off the rooms?

Nicky NLD:

I cannot tell where my body space is.  Removing the doors just kept me from bumping into them. The look on your face was priceless when I told you we were in the closet. You thought it was a music room. You asked me where do I keep my clothes. I told you that we were sitting on them. You didn’t have a clue the benches were storage chest. You know I have trouble with hanging my clothes on clothes hangers. I don’t need to get frustrated.  My family always figures out a way to help me work around something that gives me difficulty. They remind me it is no big deal. They teach me alternative methods by verbalizing and pointing out what it is I need to do. As I practice the skill more I learn it and I’m ready to move on. If you tell me to go clean the room. I need to know exactly where you need me to start. They will leave notes on the computer or a sticky note on top of the computer for me to find my information. It takes a lot of work but my family wants me to be successful without the pressure. They continue to teach because I learn by a step by step method. It is habilitation, not rehabilitation.

Sparky SPD:

Man, your mama acts like she is McGuyver or Inspector Gadget. You know our house is so cluttered and it looks like something out of Rag Magazine. You know my mom doesn’t do well with changes.

Nicky NLD:

Sparky, your mom may need to change to keep your behaviors from triggering. The clutter and having no order in your life could be part of the problem. I’m not trying to place the blame on your mom or your dad. If they don’t know when it is time for them to learn. They have so much hurt, guilt,  fear, and feelings of hopelessness. All this can be changed with empowering themselves with education and learning about sensory processing disorder.

Sparky SPD:

How does your mom manage her feelings?  My parents just seem so beat down by my behavior.

Nicky NLD:

My mom and the rest of my family educate themselves on the material. She said if it is nothing up to date, She would take action, bring the information up to date and create a new format for people to learn. She and the rest of my family understand that I have a neurological disorder with unintentional behaviors. A characteristic of NLD is anosognosia.

Due to the nature of my disability, I do not have the ability to recognize the seriousness of my own problem. So I would see my peers like I view myself, not having a problem. Bottom line Sparky, I can’t put myself in other’s shoes to show compassion, empathy, and support. Don’t be frightened, I have come a very long way. Emotions are hard to teach.

Sparky SPD:

Man, that is deep. So what did your mom do?  I feel like this is a seminar.

Nicky NLD:

My mom was diagnosed with breast cancer. She said every adversity does not have to have an adverse effect. I have a difficult time understanding fear. She said this was a good opportunity to teach fear and other emotions. She stated that people don’t like breaking themselves down to the lowest denominator. It makes them appear weak. She said she wanted the world to know how much they are taking for granted. Their adversity would give them a greater strength  She felt if you could write, spell and read… then do it.  She expressed her fears and pointed out fears of others. I did learn a lot. I still have a long way to go.

Sparky SPD:

It is time for me to make some serious changes and start surrounding myself, with positive people, and those who have my best interest at heart. I have got a lot to learn. If you don’t mind Nicky, do you take medicine?

Nicky NLD:

No, I have several coping skills and strategies that are taught by my family members to reduce the panic, anxiety, depression, and stress. Whenever I decide to go out to dinner or a movie, I go at a time when it is not crowded. I go to a place where there is less noise. I enjoy music. Maybe Zach can read the book Musiophilia by Oliver Sacks.  One of the neuropsychologists gave it to me. It is an excellent book. I tried not to overload myself on social events. I get tired and I rest in a room with white noise and low amber lighting.  Social events I attend there are 3 being the minimum and 5 being the maximum people around.  They are very knowledgeable of my unique abilities. I use scented candles for relaxation (mild scented). When I walk, I take a backpack loaded with books for deep pressure. I have a fanny pack with mints, a stress ball, and clay. If  I get anxious, I return to my safe area. If someone is angry with me it is explained to me that the person may not be ready to talk. I have the same option as that person. I am never placed in competitive sports.

Sparky SPD:

Nicky that is a lot. Will we ever grow out of this?

Nicky NLD:

We don’t grow out of this. We grow up with this. We just have to work harder.

Sparky SPD:

I like that Bose Bluetooth you are wearing. What kind of phone do you have? I got that new droid.

Nicky NLD:

I don’t have a phone.

Sparky SPD:

What!

Nicky NLD:

One day  I was at the mall with my brother and he started complaining about everyone on their cell phone talking to other people.  He was so agitated and began to point out people who had Bluetooth attachments.  I looked at him and asked if he knew if anyone was on the other end talking. You know I process out loud and this attachment would keep me in sync. He took me out to the Bose store and purchased it for me.  I wear it all the time. Everyone looks like me but there is no one on the other end of my Bluetooth.

Sparky SPD:

You are going to have the whole world with phone gear and attachments paranoid.

Nicky NLD:

I wonder how many people are laying down their phone gear and looking at others with phones crazy?

Sparky SPD:

You need to cut that out.  Where did Oprah go?

Nicky NLD:

It’s getting late.

Sparky SPD:

Should we leave her a note or that sweater you have chewed at the sleeve? Why you do that?

Nicky NLD:

Sometimes adults with developmental delays have a tendency to eat non-food items. This is called pica. It is mostly seen in children ages 1-6 and mentally challenged persons.

Sparky SPD:

Alrightee! Let’s leave a message for Zach and his family.

Nicky NLD:

We need to let you know that you are not alone. To his mom and dad hang in there and be strong. It would devastate me if my family gave up on me.

Sparky SPD:

You are right Nicky. I don’t always see eye to eye with my parents. I wouldn’t want to be isolated or rejected by them.

Nicky NLD:

A good book to read with your parents is The Explosive Child by Ross W.Greene Ph.D.: A New Approach for Understanding and Parenting Easily Frustrated, Chronically Inflexible Child. It would be good for you to have an oral motor grocery list. When you become anxious/nervous you will have things to munch and crunch on and non-food items for your body.  Learn about your sensory system which consists of Tactile System (skin,touch), Proprioceptive System (muscles,joints and tendons), Vestibular System (inner ear,balance up/down and left/right), Gustatory System and Oral Motor Input (mouth and tongue),Visual System(eyes) and Olfactory System (nose,smell). Learn what calms your sensory system and what alerts it.

Sparky SPD and Nicky NLD:

We wish you all the luck in the world. We hope this helps.  To the parents of Zach, hang in and don’t give up. You need each other.

Zach quality time with mom and dad reading, listening to music, singing and playing games will help. You need a safe environment with trusted adults and grand guardians. Thirty-two hugs a day might help and you could use a good teacher or a mentor. A national cheerleader could boost your self-esteem. Lots of love and a stable home will shoot you to the moon.

We are rooting for you.