Now What? Part 3

Where do we go from here and what was the best route for us to take.  Depending on where your kid falls on the autism spectrum will depend upon where you might start.  For some, speech and occupational therapy is a definitive need, but for others it may be more behavioral and social skills. For our son we did not have to discuss what the greater needs were, because he needed it all.  He had a severe speech delay, and handwriting along with some other fine and gross motor skills needed a lot of work.  Behavior and social skills was also put into the mix, but we worked that in a little later.  We did not want to start with it all at once and be overwhelmed with trying to manage all the various therapies, but more importantly we did not want to overload Zach and have the therapies become counter-productive.   

There are many resources available, besides the yellow pages, to find therapist.  Autism Speaks and Autism Society of America have resource information on their websites to assist families with finding services to assist children and adults. You can also do independent research on the internet through one of the various search engines.  One of the best resources out there is word of mouth.  Do not be shy with asking another parent raising a child with autism about where they take their kid for therapy.    

Once you have a list of therapists in your area I would start making some calls and ask a few questions.  The first question you want to ask is if they have any openings, because a lot of therapist have a full client list and do not have any room to add new clients.  You can always be added to their waiting list, but you could be on the list for a while.  The next question you want to ask is if they have any experience working with children who have autism.  All speech and occupational therapists receive the same training and require the same educational background for licensing.  However, it would be advantageous to find one that has experience working with clients on the autism spectrum as they will have some understanding of the various behaviors and characteristics of this unique clientele.

We started with just a speech therapist and then moved to another organization where Zach could get both services; speech and occupational therapy.  We then moved to a subsequent organization due to better available hours for scheduling and we have been with them now for at least five years.  Zach’s progress in the past five years has been like night and day.  He is developing new words and phrases daily, and his clarity of speech has vastly improved.  Not to mention his handwriting that started with big letters that were barely legible has been refined and he is now writing within the lines on the sheet of paper.  Further, his fine and gross motor skills have competed with his other development improvements.  It does not hit me regarding how much he has improved until friends come over and recognize the difference in his speech, and they are capable of understanding what he is saying.  Zach still has a long way to go, but we are so pleased with the progress he has made it makes us anxious to find out where he might be with his development during the next five years.

Stay tuned for “Now What?” Part 4 

Now What? Part 2

No magic genie popped out of a bottle and handed us the blue print of how we were suppose to help our son.  There was no booklet or manual either to give us the step by step instruction of everything we needed to know, and how to get our kid the services and funding he needed after diagnosis.  We were provided a few suggestions from the people at Zach’s pre-school regarding where we might get some help, but there was no direct linkage to the services.  I have been working with offenders for more than 17 years and I have seen guys get out of prison, report to their parole officer, and shortly thereafter have a referral for substance abuse or mental health treatment.   In a perfect world there should have been a direct referral to a case worker after my son’s diagnosis, but it just did not happen. 

Do not sit around waiting for a cold call from a person with a government agency to get you started, because you will be waiting until eternity.  Do not waste your time wondering if some savior is going to knock on your door to give your child all the therapy he needs and the resource to pay for it all.  You need to get on the telephone or pound the keyboard of your computer until your finger tips are a bloody mess to find the things your child needs.  You need to become the squeaky wheel or the annoying fingers down the chalkboard to get the attention of the people who can help your kid. 

 I cannot take credit for any of the services and funding Zach has received over the years, because I was not the one spending countless hours on the telephone or banging on the computer to find the resources.  All the credit goes to my wife, Debby, for she was the one digging around for funding to pay for services through county agencies, and cold calling organizations to get Zach speech and occupational therapy.  Funding and services are out there you just need to spend a lot of time looking for them and asking government agencies about the various opportunities.

Stay tuned for “Now What” Part 3

 

 

Now What?

There we sat, Debby and I, thinking aloud and privately to ourselves, “Now what?”  Now that Zach had a diagnosis what were we suppose to do and how were we suppose to get there from here?  As I mentioned before in my first blog post, there is no definitive or singular script on how to be a parent, but we tend to draw from what we learned from our own parents.  Good or bad, it is only human nature that we incorporate some of the things shown to us by our parents when we are children, and we ignore the things we did not like about our parents parenting and try a new approach when we grab the parenting gavel ourselves. When your child is diagnosed with autism or some other developmental or physical disability you have no childhood experience to draw on as a baseline for what you should be doing as a parent unless you had a sibling with such a diagnosis.  The only knowledge I had to draw on about autism was what I learned from taking an abnormal psychology class while obtaining my undergraduate degree and watching the movie, Rain Man.  Obviously, neither one provided any type of hands-on experience to prepare Debby and I for what we were facing, and how it would impact our family.

We all would like to think we have some control over the things that happen in our lives, and can have some control and influence of the lives we bring into this world.  When your child is born you have control over how that child will be raised, inserting discipline, and having some influence over what kind of person that child will become.  As each year passes in your child’s development parents tend to give them more control over their own life to prepare them for the responsibilities of the real world.  It is kind of like being a surgeon.  People temporarily place control of their life and well being in the hands of surgeon to help correct something and then once the surgery is over control of your body is given back to you. There are, however, two definitive things we have absolutely no control over; when we are born, and when and how we will leave this world.

When your child is diagnosed with autism you have involuntary given control of your child’s life over to a disability for which there is no cure. I wish there was an incision or zipper on my son’s head so I could open it up, re-wire his brain, and cure him of the autism that has taken over control of his body.  Parents, by nature, will protect their children from harm or do whatever they can to prevent any harm from being committed.  When a child does sustain harm parents are the first to try and find immediate relief to reduce the injury and stop any further suffering.  As a parent of a child with autism the damage was complete and there was nothing we could have done to prevent it.  At this point what we can control about our son’s diagnosis is getting him the therapy he needs with the hope that it will have a positive impact on his development with the best chance of a normal life.  We still do not have any control over the outcome of the therapy he receives and neither do the therapist that provide the services, but we need to at least give our son a chance and an opportunity to get better. 

Stay Tuned for "Now What?" part 2   

In the Beginning Part 4

Shortly after Zach’s 2 year check-up Debby set up an appointment to have Zach’s speech and hearing tested, and subsequently he was diagnosed with a severe speech delay.  We continued to think that the speech delay was potentially causing other delays in his development and not part of a bigger issue. A harsh reality was about to hit us that we had buried somewhere in our subconscious. 

The severe speech delay diagnosis qualified Zach for a pre-school program through the county mental retardation and developmental disability program.  Subsequently, Zach’s teacher, who had been working with students with developmental disabilities for more than 20 years, noticed Zach was not playing with toys appropriately and lacked social interaction with the other students.  These symptoms along with Zach’s speech delay resulted in a psychologist conducting an assessment. 

Zach was two months shy of his third birthday when he was officially diagnosed with autism and we should have seen it coming. The diagnosis was not a shock, but it was still devastating to hear.  I am six foot six inches, weigh 250 pounds, and I wanted to curl up in a fetal position on the floor and cry.  All the dreams and visions I had of what I wanted to do with my son as he got older were placed in a toilet and flushed down into the sewer.  

No parent wants to be told that their child is anything less than the healthy baby the doctor said you had when you left the hospital with him for the first time.   No parent wants to be told that their child will continue to struggle with daily task we often take for granted as they mature.  No parent wants to be told that potentially their child’s language, writing, and social skills may never be more than an elementary school level of ability.  No parent wants to receive a diagnosis that will limit their child’s physical and mental capabilities.  No parent wants to receive a diagnosis for their child in which there is no cure, but this was the reality we were given and had to live with as it was the truth.  Autism was the prison that decided to incarcerate Zach and as his parents we needed to figure out an escape to free him from this neurological confinement.    

 

 

  

In the Beginning Part 3

The pregnancy seemed to go by quick and without any complications.  But that is easy for me to say considering I was not carrying around an extra 35 pounds on the front of my torso, being kept up at night with a baby kicking around inside, and suffering from bizarre cravings of food. The biggest problem I had was running out to the grocery store at 10 o’clock at night to get Debby some cheesy popcorn or ice cream she was craving.  Other than a few grocery store runs, my wife tossing and turning at night to get comfortable and listening to her bizarre craving, the pregnancy was a breeze for me.  My wife will probably have a different take on how everything went.  

The day finally arrived on a Thursday in December 1999.  The birth, like the pregnancy, went off without a hitch, but again that is easy for me to say.  My day was spent watching ESPN in the hospital room, running down to the cafeteria to get fresh baked cookies, and drinking lots of coffee to stay awake.   Although, during my wife’s huffing and puffing, and her high drama of pushing out a 9 pound 12 ounce baby boy she did manage to find time to vomit on me.   I just could not get out of the way fast enough, and it was a sign of things to come with a new born baby.  We gave our son the name Zachary, because we both really liked it and the middle name was Hamilton after my grandfather who was killed during WWII. 

Before leaving the hospital 48 hours later a pediatrician came to give Zach his first doctor’s visit and he told us we had a healthy baby.  As a father you dream of having a son, and any father who tells you different is lying or a fool.  Do not get me wrong, we want the child and mother to be healthy first, but then our focus is on hoping to have at least one boy.  Wanting a boy goes beyond having a child to carry on the family name.  Father’s dream and envision those special moments of tossing the football around in the backyard, going to hockey practice together, fishing on the river, and helping to fix things around the house. 

We had no idea at the time that the healthy baby boy we brought home from the hospital was not 100 percent healthy after all.  Zachary was harboring something from us that even he had no idea he was harboring. We did not notice anything was wrong until Zach got a little older, and reached some developmental milestones or struggled to achieve them. 

Eighteen months later our second child was born, Riley Simone, and she was not as big as Zachary, but she was not a lightweight either.  It was around this time that we started to notice Zachary was still struggling to form words, but in talking with our parents about it they did not seem to be alarmed by it.  My mother had three girls before I came along and she told me that I started talking later in age in comparison to my sisters.  You could see, so we thought, that Zach was making a lot of sounds in an attempt to form words, but nothing was coming out other than noise.  At Zach’s 2 year check up with the pediatrician I raised the question about Zach’s lack of speech development.  Our pediatrician at the time said to me, “Eric, your son is no different than any other typical 2 year old boy that comes walking in my office.  They make a lot of noise trying to create words, but the words will come out soon.  Be patient.”   Needless to say, my patience was getting thin, because something was not right.         

In the Beginning Part 2

Remember when medical technology did not exist to help parents find out the sex of the baby before it was born?  My mother did not have the option to find out if I was a boy or girl until I was pulled out into the light of the world back in 1971.  Parents back then had to wait for the actual delivery of the baby before knowing. 

Fast forward to 1999 and during an ultrasound for our first child we were asked if we wanted to know the sex of the baby ahead of time.  Debby and I wanted to kick it old school and wait for the birth before knowing the sex.  Finding out ahead of time is like knowing the ending of a great movie without watching it first or knowing what Christmas presents you got without having the opportunity to rip off the wrapping paper.  It takes away the element of surprise. 

Without knowing the sex of the child before birth does create some additional preparation.  Instead of coming up with just one name the parents have to think of two. Then you have to discuss what color to paint the baby’s room, what kind of clothes to buy, and how do family and friends prepare for the baby shower if no one knows the sex of the baby.  So it adds a little more work and stress to the situation, but without a little more chaos life could be a lot more boring. 

Medical technology and testing continues to progressively get better in the areas of pregnancy and child birth.  Today, there are a lot more test, screenings and ultrasounds, being conducted prior to the birth along with greater techniques and technologies being used during the delivery to best protect the well-being of the mother and child.  During the pregnancy there was one test we had the option to have conducted before our first child was born.  The doctor asked us if we wanted a test to determine the possibility or probability our child would be born with mental retardation or have a birth deficiency.  It was kind of an awkward moment, but a question the doctor had to ask.  The answer for Debby and I was quite simple; NO, we do not want the test. However, it did start a discussion between Debby and me one night when we were taking a stroll around the neighborhood.  What if we took the test and the results showed that it was more probable than possible our child would be born with Down syndrome, mental retardation, or some other developmental disability?  The answer for us was quick and not unlike any other loving and caring parent.  We would accept and love the child unconditionally regardless of any physical or mental disability, issues, or obstacles.  Together we agreed and consented to bring a human being into the world, and we accept all responsibilities that come with that child.      

Stay tuned for In the Beginning Part 3!

In the Beginning

I remember when my wife, Debby, told me she was pregnant and what joyful moment it was for the two of us.  There were also several moments of panic on my part out of fear that I was going to help bring another human being into this world and then be responsible for raising it.  At first I did not think I was cut out for the job.  This is not to say I did not like children, because I did.  I just preferred them to be somebody else’s responsibility.  You know, the kind you might hold every now and then or watch for a little bit so the parents can run some errands knowing full well they will take the kid back before the night is over.  But even holding or interacting with someone else’s baby or child made my heart skip a few beats at times, because I was unsure of what to do and if I was doing it right without scaring the parent or making the kid cry.  The worst is when someone lets you hold their baby, and the next thing you know the parent has disappeared from the room and the baby starts screaming to the point it drowns out any other sound in the room.  Then, when the parent returns to the room with the look on their face that says, “What the hell’s wrong”, your only defense is, “I didn’t do anything...I was just holding the kid.” What do you expect, I was the youngest in my family and I never saw or recall seeing my mother make bottles or change diapers.  For me to become a father was like a fish born out of water, who was about to be washed into the ocean at high tide, I had no clue what the heck I was doing. 

When it comes to parenting I do not think you can declare that as your major in college and there is no on the job training either. There is a plethora of books on parenting and they all for the most part talk about the same thing, but each modifies the message in order to distinguish themselves from the others.  Although, I think it is good to take a parenting class and purchase a parenting book, what do we really have to draw on to know what to do as parents?  Our parents! This is a scary thought when you hear about the negative upbringing experiences of some individuals you wonder if that type of parenting will continue.  Let us be real, parenting is part learned from our own childhood experiences, part innate, and part natural for some. What your parents did or how they handled situations is your hands-on and real life experience to reflect on and apply.  Granted, you probably did not agree with everything your parents did, or maybe you did not like anything they did at all.  But you have a foundation to look back on and the things you liked you will pass on to your children, and the things you did not like you can adjust to your own satisfaction.