The Day It Began

I have read many stories of families that have an Autistic child and they always tell the story of when they first became aware that something was different with their child.  For many, they say that it was after one particular series of vaccinations. Many others noticed a difference after an introduction of certain types of food product(s).  The truth is, no one knows yet for sure what causes Autism and for each family it’s different.  Each family’s story is unique.  For us, I noticed right away and I videotaped much of Morgan’s first days and months when he came home from the hospital.  I wanted to document what I was witnessing and to share with others (family and professionals) to better understand this.  After all it was 1993, and Autism just wasn’t known outside the circles of families living with it.  I had certainly never heard of it.

My first memory that something might be different with my son was on the first few days after he came home from the hospital, when I would feed him.  I couldn’t breast-feed him and I will explain why in a moment.  I would sit cross-legged on our bed and cuddle him tightly to me and rock him all the while he fed; my goal was to simulate the same position as if I were breast-feeding to create that same type of bond between us.

I noticed right away that he reacted differently than my first child did.  She would always lean in, snuggling closer and often place her tiny little hand on my chest.  It’s one of my favorite firsts ‘most tender moment’ with this wonderful new little life I’d just given birth to.  However, Morgan didn’t do either of these things.  As a mater of fact, he would actually try to turn away, lean away from me, almost as if he was trying to break the bond of closeness.  It wasn’t that he wasn’t hungry, he was, and he continued to drink his bottle all the while, but it just seemed that he didn’t want the closeness.  Looking back and knowing all that I’ve learned now, I can’t help but think maybe it hurt him to be snuggled so closely, I will never know for sure, but in many ways this knowledge hurts me a lot.  Anyway, this is when I first noticed a difference and I also started to watch my little man very closely for any other signs that I could take to the doctor to explain what I felt was somehow different.

Now I will tell you of Morgan’s incredible birth.  I didn’t mention it first because I don’t want you to think this is the reason he is Autistic… I assure you, it’s not.  So, with that being said, I will tell you about one sunny July morning when I was 28 weeks pregnant with my second child, having my breakfast and taking note of what a beautiful sunny morning it was outside my kitchen window; when my water broke.

My brother was living with us at the time.  He was the only other adult at home with a vehicle and it took much convincing that I truly needed a ride to the hospital.  He just couldn’t believe it, thought I was mistaken and didn’t want to waste his time and gas going up there only to have to turn around and come right back because he was sure it was a false alarm.  But I was certain and convincing; he finally agreed to drive me the 10 miles to the emergency room.  Once there, the doctors did an exam and agreed my water had indeed broke and my labor had begun.  But it’s way too, too soon I wanted to scream.  However, I knew I needed to stay calm and listen to what the doctors were saying if we were to have any chance of saving my baby’s life at such an early stage.  They didn’t have the facilities to care for such a premature birth, so the decision was made to send us, by ambulance, another 20 miles to Emanuel Hospital in Portland, OR. which specializes in this type of case.

Once I was emitted to Emanuel hospital, the first thing the doctors did was to give me this absolutely horrible medicine called nifedipine through my intravenous (IV) tube, which was to stop my contractions.  It’s not known to cause any problems for the baby, however it gave me a rash all over my body, headaches, nausea, dizziness; just an overall feeling of illness.  I was also given a steroid drug called a corticosteroid to help quickly develop my baby’s premature lungs; since the lungs are one of the last things to mature in the womb.  The plan now was to try to stop the birth for as long as possible.  Well, it was the most miserable 4 weeks of my life.  Stuck in that hospital bed, feet up in the air, head down and the awful, awful medicine stopping the contractions.  But those weeks are what probably saved his life.

On August 22, 1993, at 32 weeks gestation, they could no longer stop the contractions and allowed my son to enter the world.  Now what happened next, I should have sued the whole hospital and it’s very lucky for them that I’m not that type of person.  Anyway, you would think that after 4 weeks of waiting and preparing for anything and everything that might or could go wrong, that all these doctors (it was a teaching hospital, i.e. I saw many, many doctors each day) surely would be on their game…. WRONG.  Problems began during the birth and on the monitoring they could see that the baby and I were in distress.  One of us was bleeding a whole heck of a lot, so they finally went in and got the baby out very quickly.  For the first 20 minutes of his life, they didn’t think they could save him and I wasn’t allowed to see him.  I found out afterwards (here comes the stupid part) that Morgan had lost a pint of blood (why couldn’t they have figured that out much sooner and stopped it).  He was without oxygen in my womb for several minutes – they said they just didn’t know (WHY NOT!).  Again, weeks and weeks to prepare, dozens of monitors and instruments and they COULDN’T EVEN TELL WHO OR WHAT WAS IN DISTRESS!  It was determined later that the umbilical cord had come loose from the lining of my stomach and this is what started the trouble.  After 4 weeks of medicines like nifedipine and the steroids and the fact that my water had broke weeks earlier all contributed to the cord weakening and starting to dry up as it began to die, it became detached.  Again, you would have thought they should have been prepared for even this.  I can’t believe I’m the first person that this happened to and with everything else that had happened so far, one would think that we might have considered this as one of the possible risks and prepare for…. a duh, ya know, just in case.  They had the nerve to ask me if I’d been taking anything that could have caused this… and of course, they even tested the cord and afterbirth to be certain I wasn’t lying…. Hell, I’d been basically strapped upside down in a hospital bed and pregnant for the last 4 weeks!   It’s a good thing I didn’t own a gun at that moment.  The tests all proved I’d nothing bad or wrong during my pregnancy to endanger my baby, just like I said.

His Apgar was less than 1 for the first 20 minutes, but they got blood into him (God Bless blood donors) and the steroids had done their job; his lungs began to work with the oxygen they gave him and he finally, after 20 minutes began to pulled through.  For those that don’t know, an Apgar score is from 1 to 10 and is how a doctor grades the overall health of a newborn, with 10 being perfect. 

The first time I was able to see him, he was covered with IV needles, tubes and wires going everywhere…. in his arms, legs, stomach and even his bald little head.  He weighed 5pds 3ozs.  For being 8 weeks early, this was a really, really good weight and helped considerably in his first minutes, hours and days in his fight for life.  It was the strangest feeling I’d ever had… such joy upon seeing him and such pain and incredible sadness at all that he’d already been though and what he looked like just then.  I have a picture of this and his 6-yr-old sister is standing at the side of the incubator peering in at him with her eyes as big as saucers.  Somehow, sometime I knew right then I was going to have to explain to her that this isn’t what you would normally see and experience when viewing a newborn baby.  Did I do the right thing by letting her see him right after he was stabilized and those first few weeks of his life?  I still like to think yes; I wanted her to meet and know anything about her brother, just in case the unthinkable did happen and he was to leave us.  To this day, she’s not sure she wants any children.

1 hour old - Birth

For the next six weeks he stayed in intense care with me by his side every day.  When you first get there and before you can go in, you had to scrub down with surgeons soap and put on a surgical-looking gown to protect all the little ones from outside germs.  I would then go in and walk by all the other little, very little babies in incubators all neatly lined up in rows with all the monitors and machines by their little beds.  I had come to recognize one little one and his/her incubator; with all the beautiful and brightly colored balloons because this is where I would turn left and go down to the end to spend time with Morgan.  One day I asked our nurse about her/him because I never saw any parents or anyone else around, just the beautiful balloons and teddy bears, etc.  She just looked at me sadly and shook her head.  It was forbidden to talk about any of the other babies and their families, but the sad look on her face said more to me than words ever could have.

Morgan improved each day.  Most of the needles, monitoring wires and his feeding tubes were now gone and he didn’t even need the special lights for jaundice anymore.  One day I came in as usual, scrubbed and then walked down to the row where I should turn left and….. nothing.  It was an empty space.  Where was he/she?  I knew it was impossible that he/she had gone home because he/she was no larger than a Barbie doll, actually looked just like one lying in the incubator and this baby had so very many tubes and machines around at all times.  I got a knot in my stomach and I quickly walked down to where Morgan was and I quietly spoke in a hurried voice to our nurse, “Where is the little baby down on the end?”  She just looked at me sadly and shook her head.  I thought, Oh God No!  I felt as if I’d just lost one of my own; I cried all that day and I held Morgan a little tighter and closer to me.  After that, I tried not to look around and notice anything or anyone else other than Morgan.  I prayed daily for us to go home soon.

He finally came home at what would have been 38 weeks gestation; still 2 weeks ahead of when he should have came into the world.  He had improved steadily each day – I was so proud of him.  I remember thinking; this little guy is going to be such a fighter, there won’t be anything he can’t do…. little did I know, our ‘fight’ hadn’t even begun.

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Programs That Are Beneficial

We always searched the Park & Recreation Booklets when they come out for activities for Morgan.  They have some amazing game-time programs that are always fabulous.  They are structured and an  Autistic child does extremely well with anything that has routine.  You will also find your special olympic signup programs in this booklet too; if not, just ask your local Park & Rec administration to research and include it next time.

The local library has some wonderful story time programs, as well as fun table games that are played routinely throughout each month.  They also have computers with many educationally software programs that can be very beneficial.  What Morgan lacked in language skills, he more than made up with his use of computer software programs – they’re a great tool for learning and fun.  He was operating a computer (mostly the mouse – click, click) before age 5.  Many of the programs at the libraries are geared for the children that are home-schooled, but anyone can join in.

Your local art galleries also have art  and paint classes (fine motor skills therapy).  We always loved signing up for finger painting and drawing in the summer time.  Arts and Crafts stores may also have some programs to offer.

If you have a home computer, I just can’t tell you how beneficial ours was for Morgan when he was young.  The software that was out was great (Reader Rabbit, etc) and every year they get better and better.  For the non-verbal child, this is an excellent resource.  Morgan is now 17-yr-old and every year we still find something new that he sees as fun and is also educational.

Better believe this one too – Get out the Wii, Play Stations, XBox, Game Boys, etc.  For the fine motor skills therapy you just can’t beat it.  Hand to Eye coordination – excellent.   There are a lot 0f educational software for these systems too.

15 yrs old - His Photo was Taken at a Summer Activity & Published in Park & Rec Catalog

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A Day@ The Special Olympics

What a wonderful achievement day this was!  This was the day Morgan ran in the Special Olympics dash race on an outside track with his peers and was able to prove that he didn’t need gross motor skills therapy anymore!!  Yeah… You go Buddy!  Picture and more to come…

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We Learned From This Day

This gallery contains 2 photos.

WE LEARNED FROM THIS DAY We came out of the grocery store like a whirlwind hurricane, Morgan slung over my left shoulder like a sack of potatoes; however, this sack of potatoes was screaming at the top of his lungs, … Continue reading

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About (Mother) Denine

About (Mother) Denine:

A single mother of two children.  One 23-yr-old daughter, Katrina, in college as a pre-med student.  She will graduate in June 2011 and then will study for her test(mcat?) to enter med school.  She currently has a job with a cardiologist clinic working in research for several doctors and loves her job.  One 17-yr-old son, Morgan, who is Autistic & ADHD.  He is in main-stream High School and wants to be an auto-mechanic.  I would like him to become an artist.  We are currently exploring both.

I am their biggest fan and greatest advocate in all that they do!

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About Morgan

He is currently a 17-yr-old Junior in mainstream High School.  He has a couple of classes that he takes to help him decide what he wants to do after High School and to show him how to manage life on his own.  He has always had a passion for cars… everything cars.  He wants to work on or around cars.  He can spot and tell you anything about any car he sees – year, make, model, etc.  He spends hours pouring over magazines and the Internet – all about cars.  I’m not so sure about this, but my job is to make sure he gets his chance to experience it and decide for himself.  We are currently looking for some type of “kit car” to purchase that he can work on in the garage.   At his IEP last year, we had the resident auto shop teacher attend and he informed Morgan and I that he didn’t stand a chance of becoming an auto mechanic because of it’s difficulty.  He said that Morgan wouldn’t be able to understand the mechanical book – and basically, that he didn’t have the time or energy to give Morgan the extra help he would need to understand.  But that just makes us both more determined.  We purchased this same auto-shop book being used at school this year.  It’s our goal to hire a tutor from the local community college for some one-on-one teaching.

Morgan has a beautiful gift at drawing.  He can draw the most magnificent pictures I’ve ever seen and the details are just extraordinary.  This is the area I would like to see him pursue a career in.  Purhaps a cartoonist or drawing future cars for the automobile companies.  But, one thing at a time.  He has taken Art classes at school for the last couple of high school years and he’s also taken art classes during the summer at the local art gallery where it’s offered, so I’m happy with that for now.

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Hello world!

FIRST POST

Hello World!

This blog will be about a collection of our stories; humorous, difficult and victorious about our journey with Autism.  We hope all will enjoy our stories and even some, with similar stories, will gain some useful insight from us and also others will share their stories/insight.  Thank you for Visiting and Welcome..

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