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The Melting Pot

Time for the Big Leagues aka Kindergarten

When last I wrote (journey back to preschool), Monkey Boy had made it through two years plus a few weeks of Special Education Preschool.  Originally, his IEP was supposed to carry him through kindergarten.  However, the changing laws had other plans.  I can’t remember the reasoning, and maybe it’s because I didn’t totally understand it at the time, but it had to do with the fact that they changed the cutoff age for the diagnosis of Developmental Delay from age six to age five.  I also think it had something to do with the timing of when the law was passed versus his eligibility meeting. If the meeting came before the change, he’d have an extra year.  His teacher was really hoping the law would pass later rather than sooner.   Unfortunately that wasn’t the case.IMG_2960.JPGFifth Birthday

His eligibility meeting wound up being scheduled after the law was passed, and because he had done so well (he was only about six months behind at the time) and had no other diagnoses, he lost his IEP.  I don’t really understand why Developmental Delay has an age cutoff because it’s not like it just goes away.  Monkey Boy learns things when his brain is ready to learn them, not before, but once it “clicks”, he pretty much has it.  The first thing I remember him learning like that was colors.  I thought he would never grasp the concept, and then one day, he knew them all.  It’s been the same way with letters, numbers, reading, math facts, etc. It’s one of the things that make school so frustrating for both of us to this day.

IMG_3123.JPGFirst Day of Kindergarten 2009So, off he went to kindergarten in the fall of 2009.  I had talked to the principal the summer prior, and she was supportive of my concerns.  I’m not sure what I expected, but he acclimated to kindergarten fairly well.  His preschool had been in a different public school, so there were times on and off throughout the year where he expressed his dislike of the change.  But, otherwise, he did fairly well and was still only about six months behind his peer group in the spring of 2010.  His teacher was very supportive throughout the entire year, and they had SST (Student Support Team) meetings periodically to see how best to help him.  The biggest concern that year was his focus and attention, and his teacher implemented several strategies to help him.   We all agreed that he had done well enough to move onto first grade. 

(To backtrack a moment, when preschool was ending, I did consider sending him to a private preschool for one more year before sending him on to kindergarten.  Having a late May birthday meant he was on the young side of the entering class, and I had held Master Yi-Yi back from kindergarten for that very reason, so I had always thought I’d do the same thing with Monkey Boy.  But, I didn’t really want to remove him from the public school setting, since he had done so well, so I just figured I could hold him back from kindergarten or first grade if necessary).

20100410_16.JPGKings Dominion 2010 (not liking the bee he had spotted nearby)

My concerns were still fairly minimal that summer after kindergarten.  The older he gets, the more the gap between Monkey Boy and many (but definitely not all) of his peers widens.  I don’t think it’s totally atypical to have that discrepancy within an age group, but I am very much aware of every nuance that seems “different,” and I hate to see him slipping closer to the bottom.  Worst of all, he is now aware of the differences, constantly refers to himself as stupid, and just wants to give up.  But back then, we were still in the “happy” phase where he tried so hard and was so proud of his accomplishments.

He was chosen to go to summer school, but we had already had a trip planned to Disney World that overlapped two of the three weeks.  If I had known way in advance, I would have changed the dates, but we’d had the reservations for a year and had multiple family units joining us.  It’s unfortunate because looking back; I think summer school would have been very beneficial.  That was also the summer when the “bug phobia” started.

20100728_165.JPGWorn out in Disney World

In hindsight, I wish I’d given more thought to his apparent lack of stamina.  I don’t think anyone thought much of it because his muscles themselves were relatively strong.  I still have trouble wrapping my brain around the differences between muscle strength and tone.  He has low muscle tone, but doesn’t appear to have weakened muscles.  Even though he turned six that summer, he still needed a stroller for Disney World (I bought one that went up to 65 pounds), and he continued to use a stroller at Kings Dominion for two more years.  It seems like something should have tipped me off.  Because now that I’ve been introduced to the concept of Retained Primitive Reflexes, and I’ve had that “aha” moment, so much more makes sense. 

In the fall of 2010, he entered first grade.  Little did I know at the time, how much I should savor that year, as it was one of his last “good” years in school to date…  

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Monkey Boy Meets the School Bus

We ended my last post with Monkey Boy still not talking.  He turned two in May of 2006 and by September still wasn’t saying much, nor was he putting any words together.  I followed the pediatrician’s advice and called to inquire about an evaluation for speech therapy, and he was found eligible. 

At this point, other than speech, he appeared to be a fairly typical two-year-old, and I figured therapy would get him talking and that would be that.  I even went ahead and registered him for a local preschool.  I’d love to be that optimistic again.  And I would strongly urge any parent who currently has concerns about their child’s speech to seek help sooner rather than later.PICT0010_2.JPGSummer 2006

So, in November of that year, we started speech therapy.  Unfortunately, he hid on my lap, threw tantrums and would only interact with the therapist on a limited basis.  It was hard to believe that this was the same child who would smile and go to anyone as a baby just a year earlier. 

By March, he had only made very limited progress.  The therapist suggested discontinuing speech therapy, and instead she would serve as a service coordinator.   One thing that had become obvious during this time was that he definitely had some sensory processing difficulties as well as language delays.  It has taken me eight more years to have some better insight into these problems.  To this day, he still craves deep pressure, yet can’t tolerate a weighted blanket.  He also developed a strong aversion to clothes and loud noises (his reaction to being startled was to hit me). 

At that time, he was said to have an immature vestibular system and hypotonia.  Put simply, he had balance issues and low muscle tone.  I really wish I had paid more attention to this back then because I’ve just found out recently how much it can affect learning.  I will get to this in more detail in future posts, but Monkey Boy was recently found to have Retained Primitive Reflexes, which can help explain many developmental delays. This is something else parents might want to explore.  Back then, there was a lot I still didn’t know.  

IMG_1678.jpgFirst Day of Two Year Old PreschoolIn the spring of 2007, I tried Monkey Boy in Toddlin’ Time.  My older two kids had loved it, and I was excited to go back.  At first, it wasn’t too bad.  He was hesitant at first, but then would play, until the fourth session, when reasons still unbeknownst to me sent him into a total meltdown.  He was also being evaluated by Child Find to see if he was eligible for Special Education services through Stafford County.  I never even knew this existed for children as young as two and in hindsight should have started much earlier. 

He was found to have fairly severe delays in things like communication development, adaptive development, cognitive development and social/emotional development.  Once his evaluation was complete, he was worked into the two year old special education preschool class, which was held three times a week for two and a half hours.  By then, there were only six weeks of school left.  I wound up going with him and helping out because he would scream if I left the room, and they wanted an accurate idea of what he was capable of doing.

What I do find amazing, looking back, is that during this time, I took him to a very crowded school picnic, where his big brother, Master Yi-Yi, was in first grade, and he was fine.  He was able to part from me, interacted with the kids, played on the equipment, and behaved in a totally appropriate manner.  It’s these completely “normal” moments that still baffle me.

IMG_0779.JPGAt the Bus Stop on the First Day of Four Year Old Preschool

Monkey Boy continued into the three year old class in the fall and then the four year old class the next year, and his progress was immense.  Since it was held within a public school, he learned to ride the bus and buy his lunch in the cafeteria.  He started speaking in five word sentences, learned his colors, letters and numbers, interacted with the teachers and his classmates, and made sure everyone in the class behaved in a safe manner.  Because it was a special education classroom, he was able to work with the PT, OT and speech therapist in a group setting.  His teachers made bimonthly home visits, and he actually came to enjoy them.  I do not know where we would have ended up without this intervention, and I can’t praise it enough.

And then he lost his IEP and started kindergarten….  

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The Journey Begins Part II

When we left off in The Journey Begins Part I, we were nearing the end of that first mostly idyllic year with Monkey Boy. During the course of his second year, I don't remember a lot of specific details, but a few things stick out. There was a trip to Ohio for my great aunt’s 90th birthday right before he turned one where he got yet another respiratory infection, his first birthday when he screamed after getting his hands and face smeared with cake, Matthew_1st_Birthday.jpgMonkey Boy's First Birthdayand a trip to Disney World shortly after he turned one where he devoured serving upon serving of fried rice. I also remember that I had expected him to be walking by then and had this idealistic image of him sitting happily on my lap enjoying all of the age-appropriate rides. In reality, not only was he not walking, he was barely standing, so he had to be held, A LOT, and rather than sitting on my lap, he often wanted to “stand” on my lap facing backwards.Picture_014_002.jpgDisney World And that’s when I first began to realize that he wasn’t so easy anymore.

Other memories from that second year include Monkey Boy taking his first steps around 15 months while friends were visiting and another round of illnesses as we were trying to move to a new house, two weeks before Christmas.  When he would eat, he would stuff his mouth too full and wind up spitting out a lot of food.  He also got physically sick from the smell of a petting zoo and the fish aisle of the grocery store.  This is also when Monkey Boy started screaming uncontrollably during his haircuts, made worse by all the hair sticking to his wet cheeks and mouth. Now mind you, he smiled happily through his first one.  He developed a debilitating fear of strangers to include family member he saw infrequently, but the strange thing was that he was less fearful of men.


Matthew_slide_at_2.jpgLove the Slide

Things really began going downhill in the spring before he turned two. I had been babysitting a little girl, who was six months older than him, since the previous year, and it had gone remarkably well, but that spring, it became more difficult. I can’t remember exactly why, but based on writings in his baby book, that’s when the whining started. He wasn’t really talking at all, but he would grab my arm to make me follow him and gesture and point to things he wanted, but he became extremely agitated if I didn’t understand him. That is also when the tantrums began. By the age of two, his favorite toys were cars and trucks and the only real word he used repetitively was “bus”.

At this point, I wasn’t overly concerned and just expected his talking to begin at any time. After all, I heard all kinds of stories about kids who didn’t start talking until three or four, and then just started speaking in complete sentences. Only that never happened with Monkey Boy. The summer after he turned two, the pediatrician told me that if he really wasn’t saying anything by fall, to consult with a speech therapist. And while “real” speech was delayed, he could hold an entire conversation, complete with pauses and inflections, using gibberish. And I really think he thought that he was talking. That gibberish was intermingled with his speech for years. I was actually kind of sad when it disappeared completely.

Coming next, I’ll share with you how a two year old can “fail” speech therapy and journey into the world of Preschool Special Education.

 

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The Journey Begins Part I

I’ve decided to delve more into the idiosyncrasies of my youngest child, Monkey Boy, because he’s been on my mind a lot lately.  Maybe because he just turned 10, and it’s hard to fathom he’s an entire decade old; a decade in which I have spent hours upon hours trying to get to the bottom of exactly what is wrong with him. 

0.jpgHe was a near perfect baby.  And I don’t say that to gloat, I just had the nightmare baby to compare him to.  You know the one who slept for 30 minutes at a time with two to three hours of screaming in between, day and night, for two months. And I also say this because I’m still trying to figure out what went wrong a year and a half later when the easy baby turned into the high maintenance baby and from there the very high maintenance kid.  We will get to all the diagnoses he’s been given over the years eventually.  I mention them here simply because I keep reading about them over and over again (I’m obsessive that way), and almost all of them say the signs start with a fussy baby. 

Anyway, the first six months of Monkey Boy’s life were relatively idyllic.  My six year old and three year old were enamored with their brother.  Monkey Boy was born three weeks early, and other than being really sleepy, there didn’t seem to be any ill effects.  He slept for hours at a time, was content to sit in his seat and peruse the world around him, barely cried at all, and I could take him ANYWHERE secure in the knowledge that there would be no meltdown (what I wouldn’t give to have that now!).  The only sign of any type of problem were delays in his physical milestones that first year.  And even these were still in the realm of normal, just slower than his siblings had been. 

1.jpgThen he hit six months, and while his temperament was still good, his health was not.  He had his first cold, and then seemingly recovered.  A couple days later things just didn’t seem right, and he developed a fever, so I made an appointment with the pediatrician.  She listened to his lungs and immediately gave him prednisolone and a breathing treatment.  He was sent home with an antibiotic, more prednisolone, instructions to administer a breathing treatment every two-four  hours, and the warning that if he started to turn blue, take him to the emergency room.  This began a long six month battle with respiratory and ear infections. 

He would be sick for two weeks, recover and be sick again within the week.  I think I counted at least 30 visits to the pediatrician in those six months. He became known as the “happy wheezer” and smiled at everybody. You wouldn’t have a clue that anything was wrong.  Finally, around his first birthday, they put him on maintenance medicine every day, which lengthened the times between illnesses.  And mind you, even though he was still a happy baby, he did not like those breathing treatments and he screamed bloody murder.  I resorted to doing them while he was asleep.

And as typical of all his diagnoses, asthma didn’t quite fit, so reactive airway disease was the official term.   Little did I know that this was just the beginning of a tumultuous journey (continue with the journey)…

 

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What's In an Egg?

Master-Yi-YiMaster Yi-YiSo, I've decided to try my hand at blogging. It's one of those things I keep saying that I want to do, and five years later still haven't done. So, when I heard that Fred Parent was looking for some new bloggers, I thought "Here's my chance" and jumped on it. I spent the day wracking my brain for ideas, only to think that I'm already not good at this, and I haven't even started. And then I picked up my youngest (from here on dubbed Monkey Boy) from school and became inspired by his comments.

As we were making our way to the parking lot, Monkey Boy said something about my children. I told him, "Well, you are my child," to which he replied "No, I'm adopted." Mind you, he isn't adopted. Based on our conversation, I decided that my first post would be about donor eggs because without them, my life would be totally different. But for that, we need to go back a little bit.

I am a carrier for Duchenne Muscular Dystrophy. I have known this most of my life. My brother passed away from heart complications of DMD at the age of 30 on July 4, 2002. I knew if I had a boy, I had a 50% chance of passing it on to him. I even saw a genetic counselor to discuss my options before having children. Yet, when it came time to have children, I chose to ignore all of that and got pregnant naturally. For some reason, I was convinced I would have a girl. At 17 weeks, I found out I was having a boy during an amniocentesis. It seemed like an interminable 6 week wait for the results, but I got supremely lucky and Master Yi-Yi got the healthy gene.

I figured I had tempted fate enough, so, when I decided to have another child a year later, I turned to IVF and MicroSort® (which made having a girl much more likely). I was young (29 at the time) and healthy, and the doctors were convinced everything would go smoothly. Unfortunately, my body did not react to the drugs appropriately and after one and a half failed cycles with my own eggs, the doctors suggested using an egg donor.

Master-Yi-Yi-with-Little-HMaster Yi-Yi and Little HThis involved sorting through a long list of prospective donors and then choosing profiles of my favorites to view. For the most part, I chose donors most resembling me and then on a whim added one with red hair (ever since I was a child, I have always wanted a red headed little girl). The first donor I chose fell through, and it just happened that the red headed one was available immediately. I figured it was fate. Nine months later, Little H was born, and I had my red headed little girl. When I decided I wanted one more baby I did another donor cycle, and along came Monkey Boy.

Some recipients of donor eggs never tell their children the origin of their birth. I have been open with mine from day one. Of course, I didn't anticipate all the people who would ask where Little H got her red hair, and for a while I told everyone who asked that I had used donor eggs. For the most part, I got crazy looks, so I just started saying it was back in the family (and we actually did have some red headed relatives) because this was easier.

I couldn't love my children any more if they came from my own genes. And Little H is so much like me, it's sometimes scary. We also share the same mixed up eye color that is part grey, part blue, part brown and part green. She has a pretty good handle on the whole thing. Monkey Boy is still a work in progress as exemplified by his adoption comment.

Stay tuned for more exciting adventures with our clan. In future posts we'll go on a journey through the stimulating process of IVF using donor eggs and I'll share some of my many escapades with Monkey Boy.

Master-Yi-Yi-and-Little-H-with-Monkey-BoyMaster Yi-Yi, Little H, and Monkey Boy

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About Laura

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Laura is mostly a stay at home mom who works part time at the Central Rappahannock Regional Library.  In the past, she was a first grade teacher.  Over the years, she has kept herself busy volunteering at school, babysitting and caring for her children.  Currently, a lot of her time is spent dragging her youngest child, Monkey Boy, to various appointments in search of answers to his developmental issues.  She also has two teenagers, son:  Master Yi-Yi and daughter: Little H. Her melting pot family also includes her ex (father to her kids), the world’s best step-dad and husband, “TR” two step-daughters, two cats and a part-time dog!

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