Jamie's Challenges...
by Abby Howard, Jamie's mom
(this page will be updated periodically with new developments)
Since Jamie's older brother Eric has had some trouble with speech and has needed speech therapy, we decided to have Jamie evaluated for development when he was about 15 months old.     Unfortunately, it was determined that not only was Jamie delayed, but his delays were much worse than Eric’s developmental delays.    At age 15 months, Jamie’s motor skills were about the level of a 10 to 11 month old child (greater than 25% delay).   Furthermore, his verbal skills were barely that of a 6 to 8 month old baby (greater than 50% delay)!

He was enrolled in Early Interventions right away.     The therapist worked with him on developing motor skills and trying to increase his minuscule attention span.    She also tried to get him to imitate----something we saw a distinct lack of.      Imitation is crucial to a child’s learning new things.   

Our family physician also referred us (at our request) to have both kids seen at a Child Development Clinic.    We had to wait 5 months for an appointment, but the kids were seen in July 2002 by a Developmental Pediatrician and an Occupational Therapist who work together at assessing kids with delays.     They agreed that both boys did have significant delays, Eric’s mainly in speech, and Jamie’s in both speech and global development.   Jamie did not even walk until he was 20 months old, he seemed to have a lot of trouble with his balance.  

Our big question was “WHY?”    The Dev Ped did NOT believe that these issues could be due to the fact that the boys were each born early, as both kids were much more than one month behind in development.    So he ordered some tests---a full chromosome screen (including a Fragile X study), as well as a neogen screen and an amino acid test.    I can’t really explain those last two tests, other than they were looking for a possible metabolic disorder.   The Ped was quite concerned with Jamie’s very small head size (known as Microcephaly), as well as his low weight for his age.    Jamie was born below the 5th percentile, and though he has grown on a decent curve, he has remained below the 5th percentile.   

The Ped then referred us to see a Geneticist.    The test results had come back, all normal.   No metabolic disorder, no Fragile X, no other known Chromosomal Syndromes.    That was good, but he said that the geneticist would want to see the boys in person, and she might see something that had been overlooked.    The geneticist examined both boys, and said she did not see anything unusual.   However, she was intrigued that both boys had significant speech problems, and Jamie’s delays were more severe than Eric’s.    She wanted to order something she called a sub-chromosomal probe, where they would actually look at genes inside the chromosomes, and see if there were any abnormalities that might shed some light on this.   They drew blood for this test, which would take over two months to complete.     They would test Jamie first, and go from there.  

In the meantime, the Dev Ped strongly advised us to get Jamie into Early Headstart or a preschool where he could interact with other babies his own age.    He strongly believed that this would stimulate Jamie’s development.   I wondered why Jamie was not learning from his older brother, but we figured that it must be because Eric was older, much bigger, and too rambunctious for Jamie.   Jamie seemed to prefer to play alone, and would withdraw when Eric was around him, he would literally retreat to a corner of the room to play alone, and he would scream if Eric came too close to him.    So maybe a small class of other kids his own size and age would be less threatening to Jamie.

But our town does not have an Early Headstart, and EI would not pay for Jamie to go to a preschool, even if it was what the doctor ordered.    We could not afford the tuition ourselves---I work part-time, but even if I worked full time, it would barely pay Jamie’s tuition, and I would still have to pay for Eric’s care when he was not in preschool himself.    Since this was important to help Jamie in his development, we started applying for government aide.   If your child has a chronic medical or developmental problem, and is determined eligible, there is money out there available to help pay for services your child needs.    For obvious reasons, this is not widely advertised, of course, and it can be very hard to find and obtain such aide.    But I was determined to try to get what we could for our child, and I did what it took to find aide for Jamie, so we could send him to preschool.    

I decided that 2 days a week would be a good start for him, and once we got the necessary funding, I enrolled Jamie in the toddler class at the same daycare Eric attends (Eric is of course in an older class).    There are about 5 other kids and two teachers in Jamie’s room, and they do all kinds of wonderful activities with the kids.     Jamie has blossomed since he started preschool, and we have been very encouraged by his progress.    He still gets help from EI too---just before he turned two, they assigned him a different therapist, this one is a speech pathologist (actually the same SP that Eric had the year before).     Though he still has barely 5 words, Jamie is making a lot more sounds.     His attention span is increasing, and he is imitating a lot more now!    YAY Jamie!     He now points to things that he wants, and makes sounds, instead of just screeching.    His favorite sound is “ba”---it seems to apply to everything from food to drink, though maybe it means “please” or “give me,” but I don’t know for sure.    Anyway, it is PROGRESS!     The only drawback of having him in preschool is that he gets every cold that goes around, and he has had several ear infections since starting school.    We do have him scheduled for a hearing test, just to make sure he hears like he should.

We have also been attempting to help Jamie gain some weight.     At age 2, his height is now barely on the chart at 32 inches, while his weight is still below the bottom of the chart at 21 pounds.    On the doctor’s recommendation, I have been making “milk-shakes” for him, which contains banana (his fave), Carnation Instant Breakfast, egg, cream, and of course whole milk.    He does love this, but he hasn't packed on the pounds as we had hoped!     He can be a very picky eater when it comes to food (typical toddler?), but I try to offer him healthy choices.    I have discovered that he loves homemade turkey or chicken soup, with rice or barley or noodles, and mixed vegetables added.     I also found that he sometimes has trouble with certain textures, but if I grind his food he will eat it better.     We plan to have him seen by a state-certified nutritionist to discuss his diet issues.    

Just before Christmas, we got the results of the sub-chromosomal probe they did.    I was beginning to think that everything was fine, since they say that abnormal results usually come back earlier than normal ones.     So I was surprised when they informed us that Jamie DOES have an abnormality.     Apparently, a piece of his Y chromosome is actually missing (called a deletion).    They have never seen this before, so they cannot say for certain that it is related to his developmental delays.     They want to look at Truman’s Y chromosome, and see how it compares.    If Truman’s Y chromosome looks the same, it would be safe to assume that it is a variation not associated with developmental delays, since Truman did not have issues.    But if Truman’s Y chromosome is normal, then there is a good chance that Jamie's delays are connected with this deletion, and they may want us to participate in some research programs to learn more about this deletion and to possibly aid other people in future.    I would be okay with that, if that is how things turn out.    Depending on the result of Truman’s test, they may or may not test Eric too.    In the meantime, we will definitely have Jamie continue in EI and preschool.

However, I find it extremely interesting that Jamie’s abnormality is in his Y chromosome.   It is the Y chromosome that makes him a boy.    This may have impact on future children for us.     If we had another boy, there is a strong chance that he could have the same deletion as Jamie.     But if we had a girl, there would be no impact, since girls do not have a Y chromosome, they have 2 X chromosomes.     The irony in this is that we desperately hoped and prayed for a girl when we conceived Jamie!  

Don’t get me wrong---I LOVE Jamie with all my heart.   He is a very special little guy, such a sweet little cuddle-bug!     I think he is going to be an artist one day----his absolute favorite past-time is coloring and drawing (while watching Blues Clues).     He is addicted to his magna-doodle, and will spend a half hour or more just scribbling on it, clearing it, scribbling some more.    He can draw an almost perfect circle, meeting the ends of his curve.     I think that is impressive for a just-turned 2 year old!    Older brother Eric enjoys coloring some, but he’d rather play with cars, like many little boys.    Jamie couldn’t care less about cars!     LOL!   I am sure Jamie will grow up to be a wonderful adult---he just needs some extra help along the way!
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We had Jamie's hearing tested in late January 2003, but he would not cooperate too well, so the results were inconclusive.   A month later, his hearing was tested again, this time with 2 audiologists to see if they could get better results.   He did a little better and they were able to determine that he responded to normal levels if speech and music.   But he did not respond well to the tones, so they wanted to schedule him for an ABR.   That is a special hearing test where they put the child to sleep with anesthesia, and then they monitor the brain's response to sounds.

I was rather leery about putting Jamie through anesthesia.   I feel confident that he hears us talking, and that is what really matters at this point.   I had my doubts that the ABR was really the right thing for Jamie.   The following week, we had to take both boys for a follow-up evaluation with the Child Development Pediatrician, so I talked with the Ped about the planned ABR.

First we talked about his hearing test results.   The doctor said that the fact is, the tones used in the conventional hearing tests are quite meaningless to a 2 yr old.   He firmly believed that Jamie just was not interested in listening to tones, so he would not respond unless they were loud.   Why should they pay attention to various droning sounds, monotonous noises, and dull squeaks, when there are such nice toys to be explored?   Of course the audiologists had to turn up the volume to try to get his attention.   However, the fact that Jamie responded consistently to normal levels of talking and music during the test shows that he does hear what he really needs to be hearing at this point!

The real issue seems to be that Jamie can get very involved in what he is doing, and then he tunes out what is going on around him.   It can often be hard to get his attention and elicit a response from him.   Part of this is his age, as he is only 2 after all.   It may partly be his character too---it could even be inherited, as his mom is pretty good at focusing on one thing and tuning out everything else.  ;-)   However, if he really wants something (say he is hungry), its easy enough to get him to drop what he is doing in favor of getting the food or drink that he wants.

In view of this, both the Ped and the OT feel that there is really NO point in doing the ABR hearing test.   It's clearly a case of weighing benefits versus risks---why put him through anesthesia, if he really doesn't have to?   The Ped stated that it was simply too soon to do such a test on Jamie.

From the clinical standpoint, the audiologist is just doing her job when she says that the conventional test results were inconclusive, and she thinks the ABR should be done.   But the Ped is looking at the broader picture of Jamie's development, and he firmly believes that Jamie's speech delays are NOT because of hearing loss.   I agree with him, so we cancelled the ABR.   Jamie can have his hearing re-tested the conventional way in 6-8 months, and he very well may cooperate better when he is a little older, and any doubts can be ruled out then.   Eric was nearly 3 yrs old when we were able to get conclusive hearing test results for him that showed he hears just fine.   It was a huge relief to me to hear from the Ped that the ABR really wasn't necessary. :-)

By the end of February 2003, Jamie had gained nearly 2 pounds since his 2 yr old check-up in December!   That milkshake must be really good for him.   He can be very picky about foods, but it would seem that his is getting enough over all.   Like all toddlers he has days where he'll eat everything, but other days he'll hardly eat anything. 

Developmentally, Jamie has made progress.   He walks well now, he can run too. (He was not walking more than 2 steps last July.)   He climbs fearlessly, even going down stairs front-wards, as long as he can hang onto the railing.   Spending time in preschool has been good for him.   The other kids have rubbed off on him quite bit---which is what we wanted!  He imitates a lot now, though last year he simply would not imitate.   He explores what different toys will do, such as he drives toy cars around, makes toy animals walk, and builds with blocks----these were all things he would not do as recently as last fall.   He also problem solves---i.e., he tries to get things open/shut, or in/out, and keeps trying until he gets it.   His favorite thing is to watch the Wiggles videos and dance along with them *
doing the hand and body motions!*   He is one busy little fellow!

Jamie still is way behind in language development.   He has no words, he even stopped saying Dada, and Mama for a while.   His main sound is "Ba", and he uses it for many different things (ball, drink, crackers, etc).   He also makes a lot of guttural noises, kind of in the back of his throat, but with his mouth closed.   He also grunts and screeches.   And he points to what he wants.   When I figure out what he is asking for, I always label it, then I inject please and thank you, so he is used to those words too.   He does not use sign language, but he has pretty readable body language, such as nodding yes or no, and getting excited over something he wants or upset over something he doesn't like.   When he wants me to pick him up, he is so emphatic, he fairly climbs me like I'm a tree, and I have to be careful that he doesn't literally pull off my clothes while he is at it!  I label everything for him, whether toys, objects, food, drinks, even his emotions.   I truly believe he understands a lot, he just doesn't yet have the words to say it himself.   It has to rub off on him sometime along the way though.

The only other thing that the Ped was concerned about is that Jamie’s head size is still very small.   There was very little change in his head size since last summer, and this could be significant, though we aren’t yet sure how much significance it has.


As you may remember, we had genetic testing done on Jamie, to see if they can find a reason for his developmental delays.   The sub-chromosome testing revealed a deletion in his Y chromosome, and they did not know if that had significance or not.   They wanted to test Truman, to see if he had the same deletion or not.   So we had asked our insurance company for pre-authorization to have Truman tested.   It took 3 months to get the approval from the insurance, then it took another 2 months to have the test completed.  

Once those results were in, we went back to see the geneticist in June 2003.   It turns out that Truman has the exact same deletion in his Y chromosome.   It is likely that other males in the Howard family have the same deletion too.   Truman's father probably has it, maybe his uncles too, and they could all have got it from Truman's grandfather---it could go back for generations.   It is safe to assume that Eric has the same deletion too.   But the fact that Truman is a normal full-functioning adult (as are the other men in his family) means that the deletion is NOT believed to have anything to do with Eric and Jamie's developmental delays.

The reason they tested Jamie and not Eric to begin with, is that Eric is only delayed in speech/language development while Jamie is more severely delayed in both speech/language and motor development, as well as growth (he still is very small body size for his age.)

Since Jamie also has microcephaly (small head size)---and his head is even small in proportion to his small body---they are now referring us to a neurologist.   That appointment is scheduled for this September.   The neurologist will decide what testing to do, probably some type if brain imaging, to see what his brain development and activity really is.   At this point we do not know if that will mean a CAT scan or an MRI or some other type of testing.

In the meantime, Jamie will continue getting Early Interventions.   Since we moved in May 2003, we have met with the agency that handles EI in this county, and they have started sending a speech therapist to work with Jamie weekly.   By early July, we were able to get him into a playgroup that meets once a week for a couple hours.   The playgroup is run by the same agency that does the EI program.   So far, it is working out great for us.

Even though Jamie doesn't speak much, he does have his way of communicating.   Jamie can point to the bread or the crackers or pretzels when he wants some.   If I pick up the wrong bag, he will shake his head vigorously 'no'.   But when I pick up the one he wants, he will nod 'yes' and otherwise be excited about it.   He also points to the refrigerator when he wants more milk, and he says "ba-ba" for bottle.   Many times he will hand me his empty bottle or cup to ask for more.   In general I find it fairly easy to communicate with him.

In contrast, when Eric was this age, he had a lot more words and sounds for things---at least 30.   But if I tried to guess what Eric wanted, and if I did not guess it right away, Eric would get mad and throw a tantrum, screaming and even rolling on the floor.   Jamie rarely throws tantrums, though he can scream loud enough if the two boys are fighting over a particular toy!

In the past 6 months, Jamie has gained about 4 pounds, which we are quite happy about.   His weight had been below the bottom of the chart for most of his life, and now he is up to the 5th percentile for weight!   Those milk-shakes I made him must have paid off!   His eating tends to fluctuate, much like a normal toddler---hardly anything one day and 3 PB sandwiches for lunch the next day!   He does love milk, but I have to try to get him to eat other food instead of filling up on milk.


After we moved in May, I did not send Jamie back to pre-school, simply because we had not had the time to find one to put him in.   I have not pursued it either, because he is in the playgroup (even if it is just 2 hrs a wk, it is something).   Also, when he turns 3 this December, he will transfer into the pre-school program that Eric is in.   But in spite of not spending that extra time with other kids his age, he has continued to progress.

The most exciting thing is that Jamie suddenly started to use some more words.   He now says "kee-tee" (kitty), "wu-wu" (dog), "moooo" (cow), "fi-fi" (fishy), and he will say "bu" with a short u for bunny.   The other night he was looking at our pet bunny, and he said "Hello" very distinctly and with inflection!   We just looked at each other in shock and said "Jamie said "hello"---did you hear that?"    He has now done it several more times.   He now uses the "Ba" sound for many words which start with 'B'--such as ball, bottle, blanket, book, Blues Clues, etc.   He is now saying "mama" and "daddy" quite regularly.   He says "mmm-mmm" for yummy, when he likes something he is eating.   I know he still has along way to go, but since right up to age 2 1/2 yrs he only had about 3 words, this is a huge improvement in just a few weeks.   This has happened just since we moved.   We are really excited!  

Another area of improvement is his attention span.   When he was first tested by EI, his attention span was microscopic, barely a few seconds.   Also he would not imitate.   At age 30 months, he not only imitates a lot, but he also has a much longer attention span.   He is now interested in playing with cars, trucks, and especially trains.   And he can play with the same one for an hour or more at a time.   In fact, he has even taken the same toy train to bed, and started playing with it again as soon as he wakes up next morning.   He likes many other toys too, such as blocks, toy food and dishes, play farm animals, and his favorite is stuffed kitty-cats.
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In October 2003, Jamie had the MRI that the neurologist ordered.  He did fine with the anesthesia, and I was happy about that.  They said the results of the MRI showed that Jamie’s brain looks small but normal.  So we still don’t have any answers as to WHY he has developmental delays.   I guess I have reached the point of accepting that that is the way it is.  At least the testing has ruled out genetic issues.   Regardless of the reasons for his delays, the fact remains that Jamie is eligible for speech therapy, and will get it for as long as he needs it.

As soon as he turned 3 years old, Jamie transferred into the preschool program.  It is at the same school as Eric goes to, but Jamie goes for 4 mornings a week (Eric goes for 5 afternoons).   At first Jamie was not too thrilled about riding the bus, but he got used to it soon enough, and is ok with it.   He is adjusting fairly well to the school routines, though the teacher reports that he tends to get whiney at times.   He still has very few words, and limited expressions for what he wants.

Of our two living children, Jamie has a harder time making adjustments and tends to be a bit more clingy.   But in general he is a sweet, happy child who loves to cuddle.   As much as I wanted him to be a girl when I was pregnant with him, now I wouldn’t trade him for the world.  :)


April 8th, 2004, we had parent-teacher conference day, where we get to have time to talk with the kids' teacher about their progress.   Jamie has made leaps and bounds.   He used to just screech, grunt, and make guttural sounds in the back of his throat with his mouth closed.   Now he babbles constantly the way that most normal babies do when beginning to talk.   He missed this stage earlier in his life for reasons we don't understand, but it is a very important stage that helps the young child learn the sounds that make up words.   He has many more "words" now, although most of his words are hard to make out unless you pay close attention.   He does just what his older brother does---he drops consonants from the middle and end of words.  

Nevertheless, we are thrilled with how well he is doing now!   He also signs some basic words, which helps us know what it is he wants even if we can't understand his words yet.   He signs milk, cookie (for animal crackers), change pants, please, and more.   Today he was fussing about something he was having trouble with, and I said to him, use your words and say "help, please."   So he signed both words and also, said "hel peez"!   I was very pleased, and praised him for "good asking".   :)   He also uses his picture cards to ask for specific foods, and even to use the potty!!!!
 
In June we had follow-up parent teacher conferences.   It was decided that Jamie would attend summer -school for 4 wks in July and August.   He did very well in summer-school, even though he had a new teacher.   He began using more words to indicate his wants, and we are better able to understand him now.   At least every week, he now has new words that we can understand!  

When he returned to the preschool program in September with his teacher from the year before, she was AMAZED at how much progress he made over the summer!   He was talking better and better, relying less on signs and picture cards.  

At his parent-teacher conference in November 2004, we all fairly glowed over how far Jamie had come in the past year since he had turned 3 and entered the preschool program!   He had so many new words, that I have quite lost count of them!   He still jabbers a fair amount, but the real words are coming out better and better!   He talks constantly, and sometimes we even have to ask him to be quiet---such as when I am on the phone!   What a huge change from the child who only grunted and screeched a year ago!   We've actually put away the picture cards and signs now, because he does so much better talking.   A casual listener would likely have a lot of trouble understanding him still, but we are used to how he talks and can figure him out for the most part.

He will use the potty at school, though he does not always stay dry in between.   At home when I try to get him to use the potty, he often resists me.   I am hoping that this winter, I will be less busy with the house, and have more time and patience to try to get him potty-trained!   I sure hope he is out of diapers before his new sibling arrives in the summer of 2005!

In August 2005, Jamie finally potty-trained completely for day-time.   I had to get a little tough with him.   I took away the pull-ups and put him in underwear---and let him wet himself!   He hated the wet pants and socks, so I told him if he made it to the potty, he wouldn't get wet pants and socks!   After a week of this (and lots of laundry), he got the idea of realizing he had to go BEFORE he actually wet, and he would run for the potty!    I did buy him a new Thomas movie as an incentive and gave it to him after 4 days of staying dry!   He definitely earned it!    He has not had anymore daytime accidents that I am aware of.   I still put him in a diaper for night-time, but he usually stays dry too, even when he takes water to bed!

He has continued to make progress in speech.   At his November 2005 Parent/Teacher Conference, the speech therapist told us that his language has caught up to his age group!   I was floored!    He is still hard to understand, but his receptive and expressive skills are there.  Now he just needs lots of work on articulation (same as his brother Eric). 

He has started to show frustration with me when I can’t understand him.   He will also pull an attitude when asked to do something he doesn’t want to do.   He’s obviously growing up and beginning to assert himself!   At the same time, he tries to get me to baby him, saying he can’t put his shoes on and things like that.   This could be partly due to the fact that he knows we are expecting another baby, and then he won’t be the baby of the family anymore.
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In June 2006, Jamie graduated Pre-school.  He was so excited about going to Kindergarten, he thought it started the next day!   Partway through the morning, he said, “Mommy, the bus forgot to come pick me up for Kindergarten!”  I told him he had to wait all summer, and it would come get him in the fall.   I don’t think he really understood the time concept involved!

Once it began in the fall, Jamie really loved Kindergarten.   He would walk around the house, labeling things and telling me what letter of the alphabet it began with.   I really had to laugh though when he picked up his spoon, and said, “Doon.   D-d  Dee!  Doon starts with D!”   I gently corrected him, explaining that the word is S-P-oon, and starts with an S, then a P.

But to my great surprise, when we had his triennial evaluation for special ed, he tested low-average, so he is no longer coded special ed!   I know he is smart, but I though he would still need speech therapy, because I think he has areas that need more work, especially articulation (like Eric).  However, they have to go by the test results, and I guess he was just enough better than Eric to be low-average instead of below average.    They then informed me that the speech therapist still does group sessions with the kindergarten, so Jamie will still receive speech help.  He just isn’t coded anymore.   I am ok with that, so I signed the papers.

Jamie’s teacher told me that Jamie is very shy in class, and has very little to say.  She says it takes a lot of effort to draw him out.   Also, if he gets upset, he will go sit in the coat rack, instead of telling the teacher what the matter is.    This is quite different from the way he is at home.    He talks continuously, so much so that sometimes I have to ask him to be quiet!!!    He does a lot of pretend play---his favorite is to pretend he is Garfield, and he will talk to his invisible friends Odie and Jon.   He also repeats Thomas stories from his other favorite TV show and Thomas movies.   Some times I think he gets lost in his own little world of make-believe.

At home, when he doesn’t like something (especially something Eric does to him) he has started screaming at the top of his lungs.   He is also hard to discipline---he always carries on so much when put in timeout, that I will end the timeout just to have peace and quiet.   I know that’s counter-productive, so I rarely use time-out anymore.  Loss of privilege seems to work best with him---just the threat of missing his favorite TV show is usually enough to get him to mind.

Every so often I find Jamie chewing on non-food items.   Such as the dining room chair he usually sits in, or other wooden toys.   Lately I found that he is chewing chunks of fabric out of his shirt cuffs!  He also chewed the end of his belt.  Oh, and pencils, crayons and erasers are other items he chews on.   I don’t know if this is because he is nervous or anxious, or if it is just a bad habit.   I did mention it to our Pedi at his yearly physical.


So we did get a referral for Jamie (and Eric) to go back to Dr Kaplan.  More about this March 22, 2007 visit is
here (scroll down).  Most of the discussion was about Eric, but at this point, there is no solid evidence that Jamie has ADHD.    However, Jamie does bare watching, especially once he starts going to full-day school.  

Our Pedi office also gave us a referral for Jamie to see their Social Worker.  I took him to this visit on March 16th.    As is often the case, the first visit is mostly for the provider to get to know the patient.   She will see Jamie again, but she made note of the fact that Jamie has a lot of nervous behaviors, including chewing on non-food items, and he is easily frightened or upset, whether by dreams or other things.    I think he is an ultra sensitive child, and I wonder if he might have some sort of sensory issues.   I have had other people ask me if he might have something called Sensory Integration Disorder, but though I mentioned it to our previous family dr, we did not pursue an answer to this.   Maybe I should bring it up again.
* * * * *
In the fall of 2007, Jamie entered First Grade.   It was a big adjustment for him, and he had a lot of tears in the early weeks.  When his teachers tried to ask him why he was crying, he refused to answer.   When I asked him, I only had a little more success, but his answers didn’t make much sense.   He would say things like, “I miss Garfield” (his kitten).  I concluded that his crying must be anxiety-related, since he’d had some trouble last year too.   I know he has a hard time with transitions, and First Grade (full day of school) is certainly a huge transition from Kindergarten which was only a couple hours.   If you think about it, he has been in half-day school since he turned 3 yrs old, so for nearly 4 yrs!   So I am sure First Grade is a huge adjustment, especially for a child who has difficulty with adjustments!   If you think about it, “missing Garfield” might actually mean that he missed the old familiar daily routine where he was home all afternoon.   

I talked with Jamie’s teacher about it, and she said that he often has trouble when asked to stop one task to go to another---if he wasn’t finished the first task, he just couldn’t seem to let go of it, even though the teacher insisted it was ok if he wasn’t done.   He also has some trouble accepting any change in the routine.    An example: One day the teacher baked cookies with the kids for a special program that would take place the following week, but they rearranged the school schedule a bit to do the baking.  This made recess a little later than normal.  Jamie could NOT wait to get outside and play, so he actually refused to eat the cookies the teacher offered to the kids as a treat!  What a strange kid!   She told me that he said to her, “but we are supposed to be playing outside!

At the same time, Jamie is doing well academically.   He is reading well, he is actually in a group of better readers in his class!   I am amazed and very pleased!   He does have trouble with writing, and we think it is due to his hypotonia (poor muscle tone) which makes it hard for him to hold and control a pencil for any period of time.   However he works very hard, and wants to please his teacher with his work.   His teacher says that he is very proud of his accomplishments!  :)

I think he is rather like me when I was that age.   He wants perfection---he wants to be able to finish every assignment and get it right.   I think this may be behind his difficulty in stopping an unfinished paper.   It sure sounds familiar to me!    But I have had to learn about time constraints and doing your best within those constraints; and sometimes you just have to accept “good enough”---it really is ok, and does NOT make you a bad person or anything.    He’ll learn those things yet!

We also had to get Jamie some glasses.  Turns out, he is far-sighted, so that could be why his eyes bother him in school and while watching TV at home.   He looks really cute with his glasses on!

All this past summer and fall, we have continued to meet with the Behavioral Clinician every few weeks.   She is a great sounding board for me, and often has some very helpful insights and suggestions for dealing with our children.   Truman and I also took a parenting class, as well as we did some marital counseling with our Pastor.   I have found it all helpful, but I still feel like none of it has really sunk in for Truman.   He just cannot seem to internalize any of the principles we keep hearing.   He definitely has problems controlling his anger, and like they say in AA, the first step is admitting you have a problem.  I think the problem is that he doesn’t think he has any problem!   He continues to blame Eric and Jamie (and me) for “making” him mad!    I find myself getting SO frustrated with Truman, and I know the kids can see that we are not a united parental front!    Truman thinks I let the kids “get away with murder”, while I believe he is WAY TOO heavy-handed and unfair, and sometimes his actions border on abuse.  One night one of the kids was fooling around, and Truman got mad and hit him hard on the ear, leaving the ear red and swollen, with red welts on his head behind the ear too!   The welts faded within an hour, but we both could be in serious trouble if stuff like this continues.  :(   

I know Truman’s father was very heavy-handed with him, but I implore Truman to break that cycle!   He does not have to repeat the sins of his father with his own children.   My own father was sometimes too harsh when I was little, but I saw that he was able to mellow and become a nicer parent with my youngest brother (who is 12 yrs younger than me).   That doesn’t mean my brother got away with murder, it means my father was able to improve his parenting.    I wish Truman could see that he does not have to break our children’s spirits to teach them to be good.    As they told us in the parenting class we took, children actually learn good behavior more readily when they have a LOVING relationship with their parents!    Harshness is far more likely to create resentment and rebellion which result in more bad behavior.   Sometimes I worry that Truman's negative treatment of his children is contributing to Jamie's anxiety (and Eric's attitude).   I desperately want to help him break the cycle, but I can't help him if he continues to refuse to recognize it.   <sad sigh>
I will post updates from time to time.   Please check in again later if you want to know how Jamie is doing as he grows up!
Click link below to read about Jamie's older brother Eric's challenges.
Eric's Challenges