Thirty days-Day 7 photo

Thirty days-Day 7 photo

Advertisements

Thirty Days-Day 7

In addition to his diagnosis of Ring 22 Syndrome and Autism (or as a result of these) Zach also has a diagnosis of ADHD. Zach’s energy level puts the Energizer Bunny to shame. It is NEVER ending. Zach is on from the moment he gets up until the moment we are able to get him to sleep.

In the early days we tried library lap sit programs and other mom and tot programs to no avail. I ended up sweaty and frustrated and Zach ended up in a tantrum because he was not interested in sitting. Even at our Early On Groups, Zach was the student running around the room looking at a toy for two seconds then dumping it on the ground. One of his Early On workers likened him to a “fruit fly.” She did not mean any harm, she just meant that he did not lite in one spot for very long.

At that time there was not a ton of information on sensory integration activities. As Zach continued in school we attempted the brushing program, weighted vests, trampolines, swings and pretty much everything to help calm him. Sometimes the techniques worked/work and other times the activities heightened/heighten his activity level. Zach’s energy level has not waned and is variable by the day. He is getting older and bigger and harder to manage and we are getting older and have a harder time managing the energy level. We are thankful that we have some great help to provide respite for us and Zach appreciates the young people that are able to keep up with him ☺.

The pictures attached today are a great example of how Zach never liked to stay in one spot. The first few show how Emily learned at a very early age to hold out that arm or to “man-handle” him into sitting. The last picture is hilarious now but so traumatic at the time…we were getting Christmas pictures at one of the photography studios that shall remain nameless ☺ The photographer had stepped forward to adjust something and I had stepped out of her way….before I could get closer to the table, Zach was up and off the table head first. She happened to be clicking the picture at that exact moment. The result is what you see…Emily posing perfectly and two little shoes up in the air. There is a sticker on the back that says not for reproduction. Funny now but not then!

Thirty Days-Day 6

“She used to say she could taste sleep and that it was as delicious as a BLT on fresh French bread.”

Rebecca Wells, Divine Secrets of the Ya-Ya Sisterhood

Just as quickly as we started to think things were improving, they started taking a turn for the worse.  When Zach started climbing out of the crib, we got a toddler bed for him.  Initially we would say “Time for bed” and Zach would trot into his room, climb in bed and that was that!  One day out of nowhere, that behavior ceased and Zach would not sleep!  Zach would scream and tantrum and be up for hours on end.  The only thing that would calm him was to watch a video.  If he watched the video once, he watched it 10 times.  This was a nightly ritual and we were all exhausted. This went on for months/years .  The sleep deprivation caused his behaviors to sky rocket and it still amazes me that Mike and I were able to be functional human beings in those days.  I am sure Emily was not well rested in those early days either but I think all of that “training” helps her sleep through just about anything now J.  I am so thankful that Mike and I were there (and still are there)  to help each other thru those never ending nights.  Our tag teaming abilities could rival the very best of the WWF!!

Eventually we found we could get Zach to sleep for a few hours on our couch.  This went on for about two years.  I am not sure what it was about the couch but we were happy to let him sleep anywhere.

We still have to lie down with Zach at night to get him to sleep and he continues to have frequent bouts of sleepless nights, or he wakes in the night and can’t get back to sleep.  We see this especially at the season changes or time changes or when his routine is out of the norm.  People often as how we know he is up at night: he is not sneaky or quiet, he runs through the hallways yelling loudly or comes down into our bedroom wide awake and raring to go!  This is a battle we have to take on this summer because someday we will not be around to help him get to sleep or to snuggle up with him to help him get back to sleep.

This has been one of the most trying aspects of life with Mr. Z.  We cherish the mornings that we all wake up refreshed after a full night of sleep!

Thirty Days-Day 5

In addition to his diagnosis of Ring 22 Syndrome and Autism (or as a result of these) Zach also has a diagnosis of ADHD.  Zach’s energy level puts the Energizer Bunny to shame. It is NEVER ending.  Zach is on from the moment he gets up until the moment we are able to get him to sleep. 

 

In the early days we tried library lap sit programs and other mom and tot programs to no avail.  I ended up sweaty and frustrated and Zach ended up in a tantrum because he was not interested in sitting.  Even at our Early On Groups, Zach was the student running around the room looking at a toy for two seconds then dumping it on the ground.  One of his Early On workers likened him to a “fruit fly.”  She did not mean any harm, she just meant that he did not lite in one spot for very long.

 

 At that time there was not a ton of information on sensory integration activities.  As Zach continued in school we attempted the brushing program, weighted vests, trampolines, swings and pretty much everything to help calm him.   Sometimes the techniques worked/work and other times the activities heightened/heighten his activity level.  Zach’s energy level has not waned and is variable by the day.   He is getting older and bigger and harder to manage and we are getting older and have a harder time managing the energy level.  We are thankful that we have some great help to provide respite for us and Zach appreciates the young people that are able to keep up with him J. 

The pictures attached today are a great example of how Zach never liked to stay in one spot.  The first few show how Emily learned at a very early age to hold out that arm or to “man-handle” him into sitting.  The last picture is hilarious now but so traumatic at the time…we were getting Christmas pictures at one of the photography studios that shall remain nameless J   The photographer had stepped forward to adjust something and I had stepped out of her way….before I could get closer to the table, Zach was up and off the table head first.  She happened to be clicking the picture at that exact moment.  The result is what you see…Emily posing perfectly and two little shoes up in the air.  There is a sticker on the back that says not for reproduction.  Funny now but not then! 

 

Thirty Days-Day 4

It’s my lucky Day!

We went about life after those initial neurologist visits feeling that Zach was making progress.   He started walking clumsily at 14 months of age (not out of the realm of typical development) he was eating ok, sleeping ok and was as cute as ever!  He was not really babbling but he did say moo and up.  He was pointing to a few things when asked so we thought all was great.  (In retrospect now that I know more about typical development there was no question that he was behind!) 

We went to the third neurologist visit feeling confident.  We watched as the Dr. poked and prodded, answered his questions and watched as he observed Zach walking etc.   As the visit was winding down we were about ready to walk out when the Dr. stated matter of factly “I think your son is retarded.”  “I am not sure how much, probably mildly, you will just have to see as he gets older.”   “You can try early intervention but I do not really think that does much good.” 

The words flew from his tongue like he was reading from a script. He seemed so uncaring and callous.  This man had just cut us to the quick and broken our hearts but he could have cared less!   Of course I started sobbing and asked if he thought we just did not spend enough time with Zach, we could do more.  Maybe everyone was talking for him, he didn’t need to talk.  We were busy and didn’t read to him enough. Should we get genetic testing done?

He said that unless we were putting Zach in a closet everyday (which we were not LOL) he should be developing fine.  He also said there was no need for genetic testing; Zach definitely did not have a genetic condition…he looked perfectly “normal.”  He also said genetic testing wouldn’t change anything so why put ourselves through it.

We left that day and never went back to him.  Not because what he said wasn’t the truth, Zach did/does have cognitive impairments but it was the awful way he presented it and the lack of hope he gave us. We went home and IMMEDIATELY called Early On to see what help they could give us and we got him involved in speech, occupational and physical therapy through the hospital.

A few weeks later we received the doctors notes and in it they stated, “Mother was not happy with my findings.” One day when telling my friend what the letter said, I joked and quoted “Did he think I was going to say,  “Halleluiah, It’s my Lucky Day?”  For years after if anything crummy happened she would say in her southern drawl “It’s my Lucky Day!”

Thirty Days-Day 3

As the saying goes, “Hindsight is 2020”

 

There were signs that more was going on than we were aware of.   Now that I have my degree in special education, work in the field, and now that we have lived this for almost 18 years, it is amazing that at the time, I just did not see it.   Maybe we were in denial, holding on to hope, or maybe we were looking through rose-colored glasses.

 

Zach never really played with toys appropriately.  When he was under a year, he liked to put things between his legs and jumble them around. He liked to spin wheels on cars; he liked to watch things with flashing lights and movement.  He also liked things with noises.   Cause and effect toys always have been and still are some of his favorite things.

 

Then there was the obsessive interest in some toys.  The vacuum, and bubble mower are great examples.  He would play with them for HOURS; we would have to hide them from him.  This is what we now know as perseveration.

 

He has always liked books. Zach would rip all the pictures of “mailbox” from his Blues Clue’s books and hold them very close to his eyes. Now we know this was a form of visual stimming. 

Zach still has a difficult time entertaining himself.  He has a very small repertoire of things that he enjoys doing.  Nowadays he perseverates on the computer, television and going in the car.