Living With High Hopes and Positive Progress

So what would be the alternative? Keeping your hopes dismally down, and never making any progress? C’mon! For much of my growing years I submitted to the philosophy that you “shouldn’t go get your hopes up, because you might set yourself up for disappointment.” That is probably one of the most depressing and cynical beliefs that one can subscribe to in life. I believe you should get your hopes up and believe that progress is not only possible, but that it will be positive!

I find that having a good spiritual foundation and a faithful outlook on life helps. Knowing that there is plan and purpose behind the challenging and difficult things that happen in life only increases my hopes for positive progress! Everyday I hope that researchers will find more clues to the causation of autism, that more effective treatments will be refined and perfected in assisting those with autism, that society will be more open-minded, patient and understanding with this growing sect of our population. Should one not hope for these things or that positive progress will be made in that I could be sorely disappointed if none of the above happens? I think not! Just as it is the same with the education and development of my boys. I pray and am hopeful that their development is ongoing and productive in nature to help them have the best chance they can in this judgmental, short and cruel world that we all live in!

I am especially hopeful for our #3. My wife has been posting videos and pictures of our youngest little man (he is going on 20 months now). It is so refreshing and hope inducing when I see his positive progress in language. He is communicating like a typical developing 19 month old. Does he have some delays. Sure. But, I pray for and am hopeful for his continued positive progress to develop into the boy and eventual man that God wants him to be. This is how I apply some of my faithful beliefs to both empower and give me comfort for the difficult trials our family faces. Being secure in the belief that we are all created with perfect plan and purpose in mind, I am secure in knowing that God knew how my boys were going to turn out long before I did! And he also knows how the story plays out for them! With that being said, a loving and benevolent God would never give someone a challenge or gift in life if it didn’t fall into His perfect plan and purpose for their life.

Please don’t think I’m preaching at you, but I can assure you that it is much easier to have a higher hope for your auttie in life when you know that all the gains are all up to Him, and that I am just going to provide the best I can in interventions, education and treatment as if all their gains in life depends on us!

Get your hopes up for a better life for your autties and have faith that it is all going to work out exactly as you picture. Because you only get in life what you picture.

God bless,

Mike

Beware the Intellect Behind the Shell!

I am reading a new book that looks at autism from a spiritual point of view. Faith is very important in my family, but I am always guarded when I read faith-based books. There is a lot of bad, damaging stuff out there and I guard what I put into my mind. This book so far has had some good points worth sharing and if worthy I will recommend the entire read once I am finished. With the first three chapters under my belt, I like the author’s viewpoint so far. He touched on the importance of understanding, or more importantly, believing in your auttie’s intellectual capabilities – regardless of what appears on the outside (or shell). I like the argument the author makes in our society’s ability to assess the intellectual capabilities of those with autism being limited due to the current efficacy in existing standardized testing for I.Q. With our current limitations of testing specifically the autistic, it is difficult to discern truly what level of thought capacity people with autism are capable of. He makes many points to help destroy stereotypes of the non-verbal, apparently non-communicative autist by those, sadly, even within the autism research field that autists are more than likely just a bunch of mentally-retarded humans who have little to no potential of productive thought. Those of us who take the developmentally positive route know this couldn’t be further from the truth. Autism is such a disorder of depth. The author even challenges my willingness to even call it a “disorder”, just as much as what one would consider “normal.” What is normal anyway? The author stresses that in the absence of more qualitative and longitudinal testing of the intellectual capabilities of those living with autism, we should all just assume that all people with autism have been Providentially-endowed with vast intellectual capability that deserves nurturing. I agree.

Let’s look at the context of when we parents discuss the negative or frustrating issues surrounding our kid’s autism right in front of them as if they aren’t even there! Just as we wouldn’t readily discuss certain issues of behavior or development in front of our typical-developing children (of course not, they can communicate and understand all the bad things we’re saying and we wouldn’t want to lower their self-esteem consciously!), then why would it be any different in discussing personal autism related issues right in front of our child with autism? Just because he or she does not speak, or it appears that they are non-communicative or they don’t demonstrate emotions the same way we do doesn’t mean that inside of that shell is a competent, understanding and feeling person who hears the praise or sting of each one of your words. As you discuss with your spouse, or others about the frustrations you are having with your child’s development right in front of him you need to remember that there is a great chance that his intellectual capabilities are allowing him to understand everything you are saying about him. The author contends that many caregivers, parents and professionals will discuss such matters in front of the individual with autism as if they are not even there. It is as if to say, “they are mentally retarded anyway, so they aren’t going to understand this negative discussion I’m having right in front of them.” But then, we learn about the endless cases where the auttie eventually learned to communicate with traditional methods and shares with us how those words use to hurt so much to hear! My wife and I have often discussed the importance of discussing the negative types of matters in private, away from the ears of our boys as we do not want to learn later that our boys were harmed by such discussions. Even when discussing things on the phone, always be mindful if your auttie is within earshot (as she may understand more than we give credit for). Err on the side that they understand completely and you’ll be sure to keep the critical out of earshot, and the praise and loving phrases right in front of them! When the author, who is a consultant on autism development and works hard to establish a deep connection with his autistic clients, shared the following my heart just sank for all the times I was critical or negative in front of my boys about the challenges their autism brings in our home:

“In fact, the two phrases most frequently communicated to me upon first connecting with others with autism are, “I love you,” and “I’m not retarded.”

I can vividly imagine my non-verbal son sitting on the couch watching one of his videos and me thinking that he isn’t paying attention to the phone conversation I am having about him not even 10 feet away about why he isn’t progressing in his verbal abilities. And that perhaps we need to look at another provider to work with him and verbalizing perhaps unreasonable expectations of timelines of when he ‘better start talking.’ Although he doesn’t react to the emotional pain he is having because he can’s, and although he doesn’t make eye contact with me…because he can’t – I can almost hear what his words (if he were more verbal) could say inside of his shell to himself. They may go something like this:

“I am trying as hard as I can Daddy. I know the right words to say, I can visualize them in my mind and say them on the inside, but I just can’t say them with my mouth. I want badly to talk, all the time, but my brain won’t let me yet. Oh, if only I could tell you right now Daddy that my teachers are helping me and I feel I am getting closer that you wouldn’t say those sad things about me. I want to be able to tell you and show you and Mommy how much I love you, but I can’t! It makes me feel so sad for you to think that I am not growing just because I am not talking on the outside like my brother or my friends at school. Please don’t give up on me. If I don’t talk will you still love me anyway? I want to be just like all the other kids, but I can’t talk the way they can. Please don’t quit on me daddy. Please love me.”

I don’t want to be the one to learn that for years I brought sadness and pain to my auttie by the words that I spoke that I thought he didn’t understand. I prefer to err on the side of them understanding every word I say. That way when I fill him with praises of how much I love him, how proud of him I am just the way he is, how I believe in him, and remind them often how much God loves them, I believe those kinds of words will encourage and foster positive development of them as a whole person – regardless if verbal ability is part of his future or not.

God, grant me the serenity
to accept the things I cannot change;
the courage to change the things I can;
and the wisdom to know the difference.

-The Serenity Prayer

In Parenting,

Mike

Life in the Fast Lane!

Life In The Fast Lane!

“Life in the fast laaannne, surely make you lose your mind….” – Joe Walsh, The Eagles.

Our family is living in a very dynamic environment right now. There is so much going on right now! In no particular order here’s whats happening (which has also caused my delay in recent posting – not that I’m making excuses though ;-):

* Celebrating our victory over our local school district
* Reviewing the 4 inch stack of documentation the district’s law firm delivered today in their response to our second state complaint
* Getting ready for my deployment to Iraq to assist the troop draw-down
* Preparing for a possible move for Lisa and the boys to Florida in my absence
* Tidying up entrepreneurial business affairs before I leave in March
* Writing and submitting press releases to gain media attention on our victory
* Building Cross-Fit into my weekly workout regiment (ouch)
* Lisa is diligently knocking out her required classes for her BCBA
* Getting ready to prep our rebuttal to the state’s response
* Finalizing taxes for 2010
* Correcting taxation issues from 2008
* Adapting to a new commanding officer in my unit
* Dealing with the myriad of leadership issues surround Soldier development in the Army (when Soldiers know you care about them – they become transparent with you – and that view presents high levels of problem solving of issues in their personal lives. It’s a whole new level of leadership for me. Not only do you care for the individual and his/her family, but you STILL have to accomplish the mission and prepare to leave for 12 months. Good stuff – not complaining)
* Selling a vehicle
* Preparing for living apart from my special needs boys and heroic wife for the next 12 months
* ….among many other unmentionables, lol

I tell you all that to tell you this. That’s life. It’s fast, dynamic and surely isn’t going to slow down or take a break because you have autistic kids. Get on with it. Do your best in all the things you do anyway. God will never give you anything that you can’t handle. And if you feel He is giving you more than your fair share, get on your knees and thank Him for it because He obviously believe highly in your efforts and abilities. We know your struggles friends. And we know for sure that giving you personal best for your needy kids is worth it.

God bless,

Mike