The grass is always browner

The grass is always browner...isn't that what we all find to be true when envying another persons "greener" pasture? I'm also finding, as the years go by, that my Mother was right - "it could be worse".

Growing up, I literally despised her "Pollyanna" attitude. Oddly enough, as most people do, I find myself quickly comforted by her positive quotes and uplifting outlook on life and its challenges now that I am older, have a marriage/family of my own.

I attended a retreat this past weekend for mothers of children with special needs. We were placed into small groups based on our child's disability. There were groups for every disability I have ever heard of and some I had no idea existed.

In sharing our stories with one another, I heard overwhelming pain, suffering, frustration, anger, fear, disappointment, exhaustion expressed that it was incomprehensible to me how any of us managed life on Planet Autism on a day to day basis. Juxtaposed to those feelings were amazing stories of accomplishment, joy and pure love that gave the glimmer of hope that shimmered just enough to identify itself as the gift of grace from God that kept every one's ability to cope alive.

Deep down, it made me realize that I would never trade my son's non-verbal piece of the autistic puzzle for the eating and sleeping (severe) issues that other children so often struggle with. Yes, hearing him "speak" is like watching a foreign movie without subtitles; however, now that he can communicate with PECS or Sign Language, the world is a much more manageable place for us all.

I am also reveling in the blessing that my husband is as involved, helpful and loving as he is...I pray I never forget that (although I highly doubt I will). This weekend was so refreshing in so many ways. This was my second year at the retreat and I hope it won't be my last for a very, very long time.

Let's start at the very beginning...

As Julie Andrews sang in The Sound of Music ..."Let's Start at the Very Beginning...a Very Good Place to Start"

Here's an article I was asked to write for our

Parish Newsletter in September of 2007

“I have conferred with my colleagues and we are in agreement that your son has Autism Spectrum Disorder…he meets all three of the criteria…any questions?” These were not the words I imagined I would be hearing on March, 15, 2007. My mind was a whirlwind and blank all at once. I felt as though I had been run over by an express train. As my husband and I sat together on the small couch in the examination room, our beautiful boy playing contently near our side, we did our best to come up with every question we hoped could be answered without leaving anything out.

I was dumbstruck by the lead Doctor’s blunt, matter-of-fact, proclamation. The clinical presentation of her diagnosis left me wondering whether or not she truly understood the devastating news she had delivered to our doorstep. Perhaps our calm reaction and ability to formulate coherent questions may have thrown her off. Nevertheless, I struggled internally with her distinct lack of compassion.

The other Doctors on the team, at least, had some positive perspectives and praised my husband and me for doing what we had already done by providing a structured, daily routine for our son. They emphasized how fortunate we were to have a diagnosis at such an early age. Statistics show that the best results with early intervention occur between the ages of two and five. Regardless, I couldn’t help the feeling that I was going to spontaneously combust under the pressure of this unexpected and unwelcome prognosis.

Shell-shocked, we left the hospital and I couldn’t restrain myself from bawling my eyes out the entire car ride home. So many fears, disappointments and angry thoughts plagued my mind and my heart was racing wildly. I felt as though I was drowning and yet the pit I was standing in was as dry and barren as a desert. My husband and I spent the rest of the day in near silence as we observed our son through Autism colored glasses. I thought I would never fall, peacefully, asleep again.

“Be still, and know that I am God;” (Psalm 46:10)

Back in November of 2006, we had only been concerned that our son had not spoken any words by the age of two. We found out, after an evaluation by a team of therapists from the Early Intervention office, that he had significant delays in development and would require several hours of developmental, occupational and speech therapy a week. My husband researched the possibility of Autism being a factor but I completely ruled it out of my mind. I thought our son only met a few of the indications…why should I have considered it? I saw only the best and brightest future for my first born and was certain that, after a few months of intensive therapy, everything would be “normal” by the time he reached his third Birthday.

“When you go through deep waters and great trouble, I will be with you…” (Isaiah 41:10)

Telling family, friends and caretakers that our son has Autism Spectrum Disorder was a difficult process. We kept the news to ourselves as long as we felt we could so that we could have the time to research the Disorder. We knew that we would be inundated with questions and wanted to be as prepared to answer them as possible. We were astounded to see the statistics (1 in less than 150 children are on the Spectrum) and dismayed by the Disorder’s list of disabilities. I started out strong and self-assured but as the days wore on my conviction crumbled because my hope was not securely fixed on my Savior. My hopes and dreams for my son to lead a “normal” life were dashed and my confidence dwindled on a daily basis.

“Cast all your anxiety on Him because He cares for you.” (I Peter 5:7)

Every day presents its challenges but coupled with those valleys are great mountaintop experiences. Every moment that our son smiles at us; looks us directly in the eyes; strives to get our attention; follows a verbal direction; laughs; or tries to communicate with us through his Picture Exchange Communication System (PECS) we bask in that sunlight which God has made possible through the rainstorm. Just as Autism is a spectrum disorder, God’s creation – the rainbow – is also a spectrum…Beautiful hues of breathtaking color bespeak His eternal covenant and commitment to those who love Him.

“Because of the Lord’s great love we are not consumed, for His compassions never fail. They are new every morning; great is your faithfulness.” (Lamentations 2:19)

Months of therapy, individual and group, have now passed and I have seen great improvement in my son’s development. God has continuously showered His grace upon me and given me just the right song on the radio; a call from a family member or friend; an encouraging email; a kind word spoken by a stranger; a Bible verse or meditation timely illuminated before my eyes at just the moment I needed it most.

I am exhausted and bewildered at times but I have not drowned. God has sustained me and I continue to trust that He will be there for our family no matter what we face and I choose to continuously praise Him for that. God has shown me, now and throughout the years of my life, His promise is true…

“For I know the plans I have for you…plans to prosper you and not to harm you, plans to give you hope and a future.” (Jeremiah 29:11)

Yes, there will be dark days ahead; yes, I am still mourning a child who is not dead; yes, I have to change my entire perspective and dreams for his future; however, I know Who holds the future and I will, with the help of our merciful God, remind myself of a local church’s sign which read “Hope springs eternal when our hope is in the eternal”.

No such thing as easy...

There is so much truth to the statement that you learn something new everyday and, yet, it never ceases to amaze me when it occurs in real life.

Yesterday, we tried (and failed) to have a new Internet/t.v. service installed. The Technician (Patrick) who came over was speaking with my husband and made a statement that rang a bell for me..."there is no such thing as easy, only different levels of hard".

Varying degrees of difficulty...hmmm...ABSOLUTELY. Monday was a perfect example of this. What a disaster!

One of the more distinct features of Life on Planet Autism is the strict adherence and innate natural habit of the deep seeded desire to remain in "the routine". There is some comfort in routine and, personally, I enjoy and thrive in the routine of daily life; however, as we all learn at one point or another, life rarely follows a routine.

At first, I was annoyed by the fact that our morning ABA session and Occupational Therapy appointment had been cancelled by the Therapists and then I relished the opportunity to have even more time to get some of those things done around the house which have been put on the back burner for over a month. After all, our son was pretty "fried" by the end of the week and he really could use some "down time". So, I allowed him to watch his favorite show while I went about my business around him. (He really cannot be left alone for more than 20 minutes.)

Things were going very smoothly - I had accomplished a lot - my son was very happy. We had a successful Speech Therapy appointment in the afternoon and then all **** broke loose during ABA. A couple of times the Therapist consulted us by asking if we thought we should stop the session. It was beyond clear that he was deeply distressed and uncooperative. We had her press on but, to what end - really? Thank God she has experienced worse than his behavior and did not want to quit.

Every time he has a moment like that, I question everything. How is he going to cope with all of life's curve balls? How is he going to get through issues without our being there to guide him through or "talk him down"? How are we ever going to "get used to" his (seemingly) irrational behavior? Will he ever stop screaming? Will he ever be able to speak words that express his anger and frustration so that we can understand exactly what it is that sets him off? Does he even know what really sets him off?

Although his receptive language is amazing, I'm certain he doesn't always understand how to connect the meaning or identification of a word with a word. For example, we ask him "do you love Daddy/Mommy"? He only stares off blankly or pays attention only to the occupying task/toy/food at hand. There is no doubt, however, that he does because he laughs with us, plays with us, desires to be with us and hugs us. He tries SO hard to communicate with us and uses every available method at his disposal. He has 58+ signs (American Sign Language) and PECS (Picture Exchange Communication System cards) under his belt but his Autism and Apraxia get in his way.

SIDEBAR: He has a secondary diagnosis of Global Apraxia (http://en.wikipedia.org/wiki/Apraxia)

I sigh deeply...there's nothing more to be said...it is what it is...another day in the Life on Planet Autism.

"Just Another Manic Monday"

So I thought I'd get out of bed early today and get "ahead of the game"; however, I can hear that my son thought the same thing...what to do??? This is a dilemma I have wrestled with time and time again. I know he will stay in bed, happy as a clam, and I could go to exercise and it will feed my endorphins with a supply to get me through this day but, I also don't want my husband to feel obligated to get up early and start "the routine" without me.

I am so blessed to be married to this man...he is - in every sense of the word - a "team player". I have no idea how I would have managed, much less functioned, to live on Planet Autism without him. Although I have several friends who tackle pretty much everything on their own, I see very clearly how this endeavor is much more successful with the assistance of someone else. Especially someone who is as committed to loving and wanted the best for your special needs child as much as you do.

Regardless of the early hour (it is still dark outside), it is soothing to have only the sound of household appliances or the tapping of the keyboard surrounding you. Our son is non-verbal but he is very vocal. We also have a parrot who, as of late, has seemed to make it his mission to have his voice rise above the din.

I don't hear anymore giggling or wiggling around coming from our son's room anymore...I'm going to hit the gym. Mondays are the most "manic" days in this household (therapy, therapy, and more therapy...ABA; OT; Speech; ABA).

The sounding board is born

I've been inspired by the movie Julie and Julia to create my own blog...a sounding board, if you will. I've been so inundated with thoughts and feelings as of late that I needed a less expensive way than seeing a professional therapist to work out these stirrings...lest I spontaneously explode under their weight.

I'm three years into my transplant onto Planet Autism and, although I have a good understanding of the "lay of the land", I am still fighting moving from short term visitor status to full fledged residency.

My son will be five soon and my husband and I both feel like we have been entrenched on this battleground for twice that amount of years. Most everyone says, "Oh, savor these early years...they grow up so fast...it's such a wonderful, precious time." We cannot possibly have the same perspective because we are so frightened about his future and this present time is such a struggle. To be clear, we relish and celebrate those mountaintop moments but are surrounded constantly by the dark valleys on a daily basis.

The times when we are surprisingly smacked on the face by reality are when we observe our son side-by-side with "typically developing" children. It is possible to "forget" his vast limitations when we are safely cocooned in our own home and I am grateful for that. However, "no man is an island" and we are forced to venture out for the necessities and that includes "getting away from it all" for awhile.

I find myself truly tempted to scream out loud at people when they try to relate to me by using the phrase (I think only those who live on this Planet have a "right" to use), "my child had a meltdown the other day and...."

They REALLY don't have a clue about all that word encompasses or entails. I doubt - very highly - that their child banged their head against a hard surface, slapped themselves, bit a piece of furniture or toy with all their might, couldn't be consoled, wouldn't let you touch them, kicked or bit you and experienced this raging to go on for over 20 minutes.

My favorite social conversation as of late (not so much) is the popular (because of the season) question, "what is your child going to be for Halloween?" I bought a costume but I have no idea if he will tolerate wearing it. We have never attempted trick-or-treating because he's obsessed with people's front porches and repetitively ringing doorbells more than interested in collecting candy. I 'm certain that he would be received with misunderstanding by whomever answers their door because he cannot communicate with any distinguishable words ("trick or treat" coming out of his mouth would be a miracle I would be willing to pay a thousand dollars to hear - $2,000 if he really understood what it meant).

Egads...where did the time go? I must answer the call (dinnertime)...