December 23, 2010

Christmas with a PDD Child

Stone has Pervasive Developmental Disorder, autism. It's not something I've blogged about a ton, mostly because we've found a plan that works and the "autism" part of our life wasn't a big deal. He's supremely high-functioning and when it comes to the core parts of education (reading and writing and 'rithmatic), he actually excels.

We know that God made our little boy perfect, just like He envisioned to fulfill His purpose. We also know that God didn't make us Stone's parents by accident - I can't tell you how much peace that gives me on days I think that this is way too much! But, I won't lie to you and say it's always an easy road.

Stone really struggles socially. He has a hard time controlling his body and he fixates on certain objects and things. His speech is delayed and he struggles with articulation, which makes the speech he does have difficult to understand. All of this makes group gatherings difficult.

Our family is extremely loving and supportive, but sometimes when you go outside of our immediate family (the people who are around Stone on at least a weekly basis) it's hard for them to understand everything.

I don't blame them for trying to help. I've got three small children, I'm sure I look like I need help, but the truth is Heath and I usually have it handled - and we're pretty good about asking for help when we need it.

Because of Stone's diagnosis (and just the general way we parent, which is mostly Love and Logic based), I think, at least on first glance, that people think we're letting a situation get out of hand, or have lost control. We don't yell at our kids unless they are in danger (or try our best not to) and we don't spank. It's different than the way I was raised, and I know that some people don't think it to be effective, but we've found from experience that "traditional" forms of discipline (especially with Stone) actually makes for a bigger problem than solution.

The hardest part of life with a PDD kiddo is that a lot of the things he does to cope with situations actually looks like a behavior problem that's out of control... He'll yell, flap, hit himself or others, ask to potty non-stop and/or hit buttons excessively. It's hard to explain this to others, without just feeling like a failure as a parent.

That's why, when I stumbled upon the letter below, I knew I had to share. It's so eloquently written to show the feelings of kids dealing with PDD/Autism. I hope it can bring some insight to everyone, but especially those who are blessed to enjoy this Christmas season with a PDD child.

The letter reads as follows:

Dear Family and Friends-

I understand that we will be visiting each other for some get-togethers this year. Sometimes these visits can be very hard for me, but here is some information that might help our visit to be more successful. As you probably know, I am challenged by a hidden disability called Autism, or what some people refer to as Pervasive Developmental Disorder (PDD). Autism/PDD is a neurodevelopmental disorder which makes it hard for me to understand the environment around me. I have barriers in my brain that you can’t see, but which make it difficult for me to adapt to my surroundings.

Sometimes I may seem rude and abrupt or silly and out of control, but it is only because I have to try so hard to understand people and at the same time, make myself understood. People with autism have different abilities. Some may not speak, some will write beautiful poetry. Others are whizzes in math and computers (Albert Einstein and Bill Gates are both thought to be autistic), or may have difficulty making friends. We are ALL different and need various degrees of support.

Sometimes when I am touched unexpectedly, it might feel painful and make me want to run away. I get easily frustrated, too. Being with lots of other people is like standing next to a moving freight train and trying to decide how and when to jump aboard. I feel frightened and confused a lot of the time. This is why I need to have things the same as much as possible. Once I learn how things happen, I can get by OK. But if something, anything, changes then I have to relearn the situation all over again! It is very hard.

When you try to talk to me, I often can’t understand what you say because there is a lot of distraction around. I have to concentrate very hard to hear and understand one thing at a time. You might think I am ignoring you – I am not. Rather, I am hearing everything and not knowing what is most important to respond to.

Get-togethers are exceptionally hard because there are so many different people, places and things going on that are out of my ordinary realm. This may be fun and adventurous for most people, but for me, it’s very hard work and can be extremely stressful. I often have to get away from all the commotion to calm down. It would be great if I had a private place set up to where I could retreat every time I go to get-togethers.

If I cannot sit at the meal table, do not think I am misbehaved or my parents have no control over me. Sitting in one place for even five minutes is often impossible for me. I feel so antsy and overwhelmed by all the smells, sounds, and people – I just have to get up and move about. Please don’t hold up your meal for me – go on without me, and my parents will handle the situation the best way they know how.

Eating in general is hard for me. If you understand that autism is a sensory processing disorder, it’s no wonder eating is a problem! Think of all the senses involved with eating. Sight, smell, taste, touch AND all the complicated mechanics that are involved. Chewing and swallowing is something that a lot of people with autism have trouble with. I am not picky – I literally cannot eat certain foods as my sensory system and/or oral motor coordination are impaired.

Don’t be disappointed if Mom hasn’t dressed me in the best clothes there are. It’s because she knows how much stiff and frilly clothes drive me buggy! I have to feel comfortable in my clothes or I will just be miserable. When I go to someone else’s house, I may appear crabby. Things have to be done in ways I am familiar with or else I might get confused and frustrated. It doesn’t mean you have to change the way you are doing things – just please be patient with me, and understanding of how I have to cope. Mom and Dad have no control over how my autism makes me feel inside. People with autism often have little things that they do to help themselves feel more comfortable. The grown-ups call it “self-regulation” or “stimming.” I might rock, hum, flick my fingers, tap a string, hit buttons or any number of different things. I am not trying to be disruptive or weird. Again, I am doing what I have to do for my brain to adapt to your world. Sometimes I cannot stop myself from talking, singing, laughing, or doing an activity I enjoy. The grown-ups call this “perseverating” which is kinda like self-regulation or stimming. I do this only because I have found something to occupy myself that makes me feel comfortable. Perseverating behaviors are good to a certain degree because they help me calm down.

Please be respectful to my Mom and Dad if they let me “stim” for a while as they know me best and what helps to calm me. Remember that my Mom and Dad have to watch me much more closely than the average child. This is for my own safety, and preservation of your possessions. It hurts my parents’ feelings to be criticized for being over-protective, or condemned for not watching me close enough. They are human and have been given an assignment intended for saints. My parents are good people and need your support and not rude remarks.

Gatherings are filled with sights, sounds, and smells. The average household is turned into a busy, frantic, festive place. Remember that this may be fun for you, but it’s very hard work for me to conform. If I fall apart or act out in a way that you consider socially inappropriate, please remember that I don’t possess the neurological system that is required to follow some social rules. I am a unique person – an interesting person. I will find my place at these celebrations that is comfortable for us all, as long as you’ll try to view the world through my eyes!

-Author Unknown

I do not know who wrote this, But I do feel it can help so many. Please feel free to share.

And be on the look out for more posts about our treatment plans for Stone. I've learned so much through those who have been brave enough to share their experiences, it's time for me to do the same.


Tammy Stone said...

This is an awesome letter and explanation, I am thankful you posted it. I love Stone very much and only want the best for him. Please if I am doing something wrong, correct me. I only want to be helpful and only have food intentions where all the boys are concern. I love you all very much!
Aunt Tammy

Anna said...

What a lovely, heart-wrenching, eye opening letter. Thanks for sharing. For the record, you don't ever need to explain, or justify your parenting. Isn't it frustrating how 'judgy' parents can be? I think it stems from our own insecurities about if what we are doing is 'right.' Your happy, thriving children are the fruits of your labor! I wish I knew your kids better. Stone has been utterly charming every time I've met him!

Keri said...

wow. I'm in tears. Thank you so much for posting that. I'll be using it and passing it along to many others. I cannot wait to read more about your wonderful parenting of Stone....and all the boys!

Aimee said...

I love reading your blog and following your family. BH, your neighbor, is my best friend, so I hear all about your family vacations to Bandara and the lake house. I have taught students with Autism, and my husband was a Special Ed teacher, so the subject of Autism is near and dear to me. When I taught students with Autism, I used a ton of things to help them. We did Social Stories and Storyboarding so they knew what to expect next. If you EVER need anything, just let me know. I am a firm believer in "it takes a village to raise a child". Good luck this holiday season as the social gatherings will be more stressful than fun because of how they affect your child.

Jenna said...

great post!!! very enlightening!

Love, Me said...

I feel the same way as Tammy! If I am ever doing anything wrong please just tell me! I am not a parent, so I always feel lost around little ones! Love you much!

Living with Three Boys of Our Own said...

Thanks for all of the support! It feels so good to know that people are willing to be accepting, yet still so hard to not feel judged. We'll get there!

Allison said...

Just catching up on my reader. I couldn't agree more with Anna. You don't need to explain to anyone but believe me I know the feeling. Ryan had some sensory issues and behaviors that came along with that. You are doing an awesome "job" with your boys.