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The Melting Pot

Heading into Unchartered Territory in the Big Leagues

According to Monkey Boy, the summer of 2014 was the worst one ever.  Because I failed to engage him in much academic work last year, I decided that Monkey Boy needed a tutor.  I hadimg_3081.jpgMaster Yi-Yi and Monkey Boy also hoped to send him to summer school, but once again, he didn’t qualify because, if I understand it correctly, only kids who might get ahead in those three weeks were offered a spot.  I still think it might have benefitted him, but unfortunately it wasn’t my place to decide.  In addition to having a tutor for an hour twice a week, he had an hour of Occupational therapy (OT) and a half hour of speech therapy each week as well.  So, while in reality these things didn’t take up much time at all, in Monkey Boy’s mind, they ruined “everything.”

Despite his negativity, and sometimes the inconvenience, I wouldn’t change any of it.  I loved his tutor (she was a special education teacher at his elementary school and already knew Monkey Boy), and she was wonderful with him. She used lots of math games and interesting, short articles for reading and tried to make it as fun as possible.  Not that Monkey Boy ever showed much enthusiasm (he is almost always reserved with adults and not a “touchy feely” kid at all), but I knew when he wanted to show her his favorite lion or the “kinesthetic sand” we had purchased that we had made some headway.

20140919_174.JPGCurtis Park LakeAlthough he complains about going, I know Monkey Boy enjoys OT.  Once he is there, he’s fine and always leaves in a better mood.  It’s the transition and car ride that bother him the most.  And like I said in my previous post, his occupational therapist at Helping Hands is wonderful.  He’s even gotten to the point where he’s comfortable and “chatty” with her.  His speech therapist at Fox Therapy is also great, but it’s definitely the thing Monkey Boy likes the least.  Regardless, he has made a lot of progress with his speech sounds, specifically “ing” and “th,” so he is also working on more practical language, such as multiple meanings, inferences and social language.   He wasn’t exactly thrilled when I told him we are continuing the OT and speech throughout the school year!  As an aside, both these places now do speech and OT, but originally Helping Hands didn’t have speech.  Since he has been with his speech therapist for three months now and his Occupational therapist for nine months, I don’t want to change either, but this is something to think about if your child needs both services.My daughter, Little H, also had tutoring once a week to help with her dyslexia. I will get into that more in my next post.  Of course, she wasn’t happy either, but it was the right decision.

PICT0010_001.JPGWoodwardIn addition to these appointments, we had a lot of other things going on.  Once again, Master Yi-Yi spent a week at Woodward at the end of June.  This time, my husband and I took him, and my mom, Little H, Monkey Boy and I picked him up.  The trip with Monkey Boy was a step up from from two years ago. The car ride was fine, but I typically visit Master Yi-Yi on the Friday evening we get there (he needs to be picked up on Saturday by 9 am, so we head to Pennsylvania on Friday), and Monkey Boy wanted no part of that.  He just wanted to hang out in the hotel room!  So, he had a bit of a meltdown before and during our visit. 

In July, my younger stepdaughter was here from California for two weeks.  She is almost sixteen and has her own set of issues and we felt it would be good for her to spend some time with all of us.  The kids get along in the same way most siblings do, alternating between acceptance and annoyance.  The boys generally have less patience than Little H.  She arrived on the fourth of July, so she was able to enjoy the fireworks with us.  We had a fun get-away to Great Wolf Lodge while she was here.Great_Wolf_Lodge1.jpgGreat Wolf Lodge

August also brought us TR’s great aunt.  We fit in a trip to DC, some sightseeing around Fredericksburg and a couple trips to Kings Dominion.  Monkey Boy wound up staying with my mom for much of it.  I’m not sure what I would do without her help!  There were parts of the DC trip he would have enjoyed, but he wouldn’t have tolerated the twelve hour day, nor would he have done well with all the walking.  As far as Kings Dominion goes, he can’t deal with the heat or the crowds, and Little H stayed home with him.  Neither she nor Monkey Boy enjoys the rides, unlike Master Yi-Yi who can’t get enough. 

Not that Monkey Boy was left out of everything fun.  He saw his best friend throughout the summer, and we fit in a couple playdates with another friend as well.  We managed a few outings to the YMCA waterpark, and spent a day at Aquia Landing Beach. 

The last week, we wound up attending three open Houses; the high school on Tuesday, the middle school on Wednesday and the elementary school on Thursday.  I don’t think the kids could have shown any less enthusiasm. 

IMG_5878.JPGFirst Day of Fifth GradeMonkey Boy has been in fifth grade for three weeks now, and so far, so good. He likes his male teacher (first-ever), is better prepared thanks to his “ruined summer, and his language has improved.  I’ll give you a brief update on how that is going next time as well as start touching on some sorely neglected topics.  Master Yi-Yi and Little H have stories to be told.   I have a husband, ex-husband, two stepdaughters, a part time job and pets that add their own anecdotes to our melting pot family.  And I will touch back on my first post when I introduced donor eggs.  Remember that one?  It seems so long ago now.  And of course, I’ll continue to keep you up to date on Monkey Boy’s progress.

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Swimming Against the Current in the Big Leagues (Fourth Grade)

Matthew.jpgFirst Day of 4th GradeIn the fall of 2013, for better or worse, Monkey Boy started fourth grade.  I always start out the year with a letter to his teacher explaining his history and his problems, and they seem to appreciate the insight.  We both really liked his teacher, and she started the year on top of things with him.  We had an IEP meeting in the fall to discuss his OT (Occupational Therapy) evaluation from Children’s Hospital, but because it wasn’t blatantly affecting his school work, he didn’t qualify for any services from his elementary school.

In the meantime, we were also trying different ADHD medications.  In the fall, we tried two different doses of Vyvanse, but even the lowest dose sedated him.  It also really bothered his stomach. The pediatrician was still dispensing his medicine, so I decided to take him to the psychiatrist when we felt he needed another change.   We then tried two different doses of Focalin, but it either sedated him or didn’t last long enough.

We talked to the psychiatrist about Monkey Boy’s anxiety and the long waiting list for occupational therapy.   She referred me to a psychologist in her office for his anxiety and to Helping Hands for occupational therapy.  The psychologist was another total failure, but Helping Hands has been wonderful, and he was able to get in immediately. IMG_4721.JPGSnow Day! Winter 2014

In January, we tried anxiety medicine and no ADHD medicine.  The anxiety medicine worked wonders.  I have never medicated Monkey Boy lightly, but after talking with many other people as well as various healthcare providers, I decided this was the best thing for him.  Suddenly, his bug phobia was much less pronounced, he participated more in class, and he would stay in a room by himself. The only downside was that his behavior in school (which had NEVER been an issue) went downhill.  I wasn’t sure if it was because Stafford County schools were having so many snow days, he was no longer anxious about getting into trouble, or the lack of ADHD medicine.  I do know it was an issue on and off for the remainder of the fourth grade.  

Because he seemed to be less attentive, we put him back on ADHD medicine in February and this time we tried Metadate.  He did fairly well, but it wasn’t lasting quite long enough (only about five hours), and math, a topic he really needs to focus on, was at the end of the day.  We didn’t want to increase to the next dose because it would have doubled it.  Finally, I asked about Quillivant.  It is the only liquid extended release ADHD medicine on the market. Because it is a liquid, it’s easier to fine tune the dosage.  Since swallowing capsules had also been an issue for Monkey Boy, I thought it might be worth a try.  The psychiatrist agreed, and this is what he used, at the lowest dose, for the rest of fourth grade. The only drawback is that it usually isn’t in stock at the pharmacy and needs to be ordered.  And apparently,my kids’ insurance company prefers an alternate because I got a letter saying if I chose the generic form of methylphenidate, it would be free.  The thing is Ritalin, Concerta, Focalin, and Metadate are all methylphenidate medicines, and they all work differently for Monkey Boy, so it really made no sense.  My cost is so low that it wasn’t enough to persuade me to change.IMG_4980_002.JPGDressed for "The Miraculous Journey of Edward Tulane"

We were now into the spring of fourth grade. Monkey Boy had made some progress in math and reading, but was still way behind his peers.  I had a psychologist retest him for learning disabilities, but the results were consistent with previous testing, and we really didn’t learn anything new.  He had weekly visits to the OT and continued to work on his IEP goals.  What confounds me the most is that he has these goals for math, but then he is also expected to keep up with the class.  Granted he has some one-on-one help, but that’s no good when he still doesn’t have the foundation.  He managed to meet all his IEP goals by the end of the year, but he also fell further behind in the classroom.  Now he despises math, he refuses to try, and he doesn’t stay focused. 

He was invited to do weekly after-school tutoring for reading in April and May, but we chose not to participate.  It interfered with other appointments, and he was just “done” by the time the school day ended. There is only so much you can “stuff” into a child’s head in a day.  

IMG_5406_001.JPGMonkey Boy's 10th BirthdayBecause I was still concerned about language and articulation, I got a referral to a speech pathologist.  Monkey Boy has speech once a week in school, and he loves the teacher and the group, but I thought he might benefit from additional therapy over the summer.  He had an evaluation in the spring, and qualified for services, but then we had to wait for authorization from the insurance company.  This took longer than usual because there was some confusion as to whether speech therapy was covered by the policy…unfortunately, it isn’t, but at that point we chose to proceed with therapy anyway. 

In May, the special education team and I met for Monkey Boy’s final IEP meeting of the year to set goals for fifth grade.  For the most part I was satisfied with the outcome.   The only thing that required any discussion was the addition of a typing accommodation.  Monkey Boy still has trouble differentiating capital from lower case letters in his writing.  They say this isn’t too much of a concern per se; however, it’s a big problem when it comes to proper capitalization in sentences.  The special education teacher suggested allowing him to type, but the team decided it would give him an unfair advantage.  I agree that he does need to learn proper capitalization on paper, but it’s kind of a joke to say Monkey Boy would ever have an unfair advantage in anything related to academics.  Especially, since he has physical limitations that make handwriting difficult for him, but I learned about that after school ended, so it’s something new to discuss.

He ended the school marginally ahead of where he started, and he managed to fail all of his SOL tests. Sometimes, I just wish time would stop to allow him to do some catching up. 

In my next post, I’ll share with you how I set out to “ruin” Monkey Boy’s most recent summer vacation and we’ll take a glimpse into the beginning of fifth grade as we enter the unknown that is the 2014-2015 academic year.

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The Calm Before the Storm in the Big Leagues

Third grade ended for Monkey Boy with a referral to an OT, the beginning of the quest to find the right ADHD medicine, and my “misguided” belief that I would be able to help Monkey Boy make some progress in math and reading over the summer.  He had failed two SOL tests (math and science), and he had passed two (reading and social studies).20130704_37.JPGJuly 2013

Monkey Boy can be incredibly stubborn if he doesn’t want to do something.  In the summer of 2013, I had grand plans to help him get a little further ahead in math and reading.  I totally failed.  I can make him sit, give him a book or pencil, and ask him questions, but I cannot make him read out loud, put pencil to paper or engage in conversation.  Ultimately these attempts result in irritation, tears (his and mine!) and a complete meltdown (his).  It doesn’t matter if it’s extra summer work or homework, the result is the same. Bribery and sticker charts worked in the past, but not so much anymore.  And considering I have degrees in both psychology and education, I feel doubly inept. I can’t even get him to play games if they resemble anything educational.  In some ways, he’s too smart for his own good!

727__42__001.JPGGreat Wolf Lodge

Unfortunately, summer school was not an option that year.  In 2012, it wasn’t offered at all, and I assumed that it was the same in 2013.  It wasn’t until later that I found out there had been summer school; it just hadn’t been offered to Monkey Boy.  This year I made a point of asking, but was told it was only for students who would benefit from the three week session. I understand that space and money are limited, but it’s still very frustrating because I think it would have helped him both years.  Sometimes the concept that he is “too far behind for this” yet isn’t “far enough behind for that” makes me crazy.

That summer, I also sought therapy for his anxiety.  Once again, we were met with a waiting list. In the meantime, he was invited to join a social skills group.  I figured it wouldn’t hurt.   He absolutely hated it.  Talking is just not his thing.  It’s one of his meltdown triggers (The Explosive Child is a great book on this topic). After several sessions into the fall, we decided it was just making things worse at home.

726__53__001.JPGGreat Wolf Lodge

Monkey Boy finally had his OT evaluation at the beginning of August.  They did some testing and found he had decreased upper body strength, poor visual motor integration skills and difficulties with sensory processing.  Therefore, he qualified for services, except there was an eight month long waiting list.

We did manage to fit in some fun things over the summer.  Monkey Boy has a best friend whom he has known since first grade, and they get together fairly often.  I have found it has helped Monkey Boy’s language development, and he has fewer meltdowns in public if his friend is along.  They are both fairly young for their grades (birthdays in May a week apart), and neither are particularly fond of schoolwork, so they’re a pretty good fit.  We belonged to the YMCA Waterpark and spent some time there, although the bees were a big problem, especially with his insect phobia. 

Master Yi-Yi and Little H, my other two kids, had their share of activities, too.  For the past three summers, Master Yi-Yi has spent a week in Woodward, PA 628__5_.JPGCamp Woodwardat their skateboarding camp.  In 2012, my mom and I had taken Little H and Monkey Boy with us to drop Master Yi-Yi off, but Monkey Boy had several meltdowns induced by the long car ride, the heat, the bugs and the idle time at Woodward just to name a few. So, in the summer of 2012, my husband and I took Master Yi-Yi and left Little H and Monkey Boy with my mom.  Master Yi-Yi also volunteered at the Curtis Park Skateboarding camp for four weeks in July into August, so that took up a bit of our summer.  And then Little H spent a different week in Field Hockey camp. We also managed to get a weekend in at Great Wolf Lodge, which was great for Monkey Boy.  All the kids had a great time even though they are older.

Before we knew it, September arrived along with the first day of school; brace yourself for the next post as the downward spiral escalates. 

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A Race Against Time in the Big Leagues (Third Grade)

20120904_9.JPGFirst Day of Third Grade 2012Time is my enemy.  I know “they’re growing up so fast” or “time is moving too quickly” are common refrains heard from parents.  But with Monkey Boy, it’s more than a nostalgic reflection; I feel like I’m in a constant battle against time.  When he was about six months old, I quit reading the baby books because he wasn’t keeping up.  These days, I try to steer away from any comparisons to his peers.  What some parents take for granted (including me when it comes to my older two, Little H and Master Yi-Yi) are often major accomplishments for Monkey Boy, like, at the age of nine, when he truly understood that there are 60 seconds in a minute.  Math is the most difficult, and, unfortunately, by the time he grasps a concept, the class has moved through several new ones.  His ability to understand and use oral language also continues to be a step behind. I really found myself in a fight against time in the fall of 2012, when he entered third grade.  I was concerned because he was going from a close knit classroom he had known for two years into the unknown.  If you remember from my previous post, he had looped from first to second grade with the same class and teacher. I knew the pace of third grade was much faster than previous grades, and I was uncertain of his ability to keep up.

The summer before third grade, I had decided that I wanted to take him to a developmental pediatrician.  I can’t remember exactly what prompted that decision.  I think the biggest things were the thought of middle school (which continues to approach far too quickly) and his continued difficulty with language.  He also needed a medical diagnosis from a physician if he were ever going to have an IEP.

My choices were Kluge or Children’s Hospital in Richmond.  While I’ve heard great things about Kluge and love Charlottesville, I chose Richmond because it was closer, and they have a satellite office in Fredericksburg.  Also, long car rides are meltdown inducers. In hindsight, I’m not sure they’d be my first choice.   But that’s who I called, and they told me it would be about eight months before I could get an appointment, which put me into March. From what I have heard, Kluge is about the same.  That is a long time to wait when you’re talking about almost an entire school year passing by.  So, if you have concerns about your child’s development, I would contact an expert as soon as possible.  I wasn’t too worried at the time because he had done all right in second grade.  I also didn’t realize how poorly he was actually going to do in third grade.

IMG_2776_001.JPGNew Glasses December 2012

What I hadn’t envisioned when he looped from first to second grade was how long it would take him to adapt to a new teacher, class and set of rules.  At the end of the previous school year, I had indicated on my parent input form that because of his difficulty with transitions, it would be in his best interest to place him in a class with several students from the previous two years.  Unfortunately, only one little girl was the same, and I think this contributed to his lack of classroom participation. It took him almost an entire semester to get acclimated, and his academic progress was stilted.  On a positive note, he loved his teacher, and she was great about giving the kids opportunities to move between lessons.

We had also increased the dosage of his ADHD medicine, Concerta, from 18 to 27 mg.  Concerta had worked well in second grade, so I didn’t think too much of it.  That’s one thing I should have kept better tabs on.  It turned out his medicine was acting as a sedative, but I didn’t realize how badly until the spring.  We’ve now tried about five different medicines until finding one that worked well.

 Throughout the semester, I communicated with Monkey Boy’s teacher in person and in emails and there was an SST meeting in November.  At the meeting, we discussed Monkey Boy’s lack of progress and came up with some modifications to help him.   A follow-up meeting was scheduled for January.  He had also failed the eye muscle balance test, so we made a trip to the eye doctor.  The only thing she found was that he was nearsighted with one eye being worse, so he started wearing glasses. 

The January meeting rolled around, and he had continued to make little progress.   Since the interventions still weren’t working, an evaluation for special education was recommended.  A meeting was set up for April.  In the meantime, the school went through its own testing process.  

IMG_1330_001.JPGSpring 2013

In March 2013, we finally saw the developmental pediatrician.  After all that time, it was a bit of a letdown.  The doctor seemed very knowledgeable and did offer some good advice, but he only spent about 5-10 minutes with Monkey Boy and the rest of the time talking to me.  Based on that, he corroborated the psychologist’s diagnosis of autism and ADHD along with a “language learning problem.”  It was good to have a medical diagnosis, but I had been hoping for more answers.  The best thing that came from that appointment was a referral to an occupational therapist. Unfortunately, their first opening wasn’t until August.

Monkey Boy’s progress continued to be slow.  He attended after-school tutoring in reading to help him get ready for his SOL tests, but while concentrating on this topic, he continued to fall more behind in math.  Occasionally, he complained that his classmates told him he was “stupid,” and he became very cognizant of his shortcomings and started to lose interest in learning.  I’ve read that kids with learning disabilities go one of two ways.  They either compensate for their disability (Little H has done this with dyslexia, which I will revisit in a later post), or they completely give up and stop trying (which is what Monkey Boy has done). 

In April, I met with the elementary school’s special education team.  Monkey Boy qualified for an IEP based on his diagnosis of ADHD.  It was interesting that he only met the criterion for autism in two out of three categories.  Not that it really mattered what the diagnosis was, since his goals are based on his area of need.  Fortunately, it was done in time to give him some accommodations on his SOL tests.

The IEP was a step in the right direction towards getting him help, but as I learned throughout fourth grade, it came with its own set of frustrations…

 

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Loving Life in the Big Leagues (First and Second Grade)

As I mentioned at the end of my previous post, Monkey Boy moved on to first grade in the fall of 2010. He continued to have issues with attention and focus, and he gradually fell a little bit more behind his grade level. He also became more reticent in class and was no longer interacting as well. His first grade 20100907_24.JPGFirst Day of First Grade Fall 2010teacher and I discussed holding him back, but several factors kept us from doing so.  The main one being that his teacher was looping and we thought that consistency would be good for him.  Also, renovations were being done on his school, and they were going to be housed elsewhere, so again, we thought the consistency of the same teacher and class would be beneficial.

 In preschool, he’d had some focusing issues, but his teachers (and the psychologist) were of the opinion that it wasn’t anything out of the realm of normal at the time, so I didn’t concern myself with it much.   I was also hesitant to put him on medicine because he had already been on so many medicines for his respiratory issues and “asthma.” 

20110531_128.JPGFirst Grade Field Trip Spring 2011By the end of first grade, it was obvious that he was having more problems with attention and hyperactivity, so that summer I decided to have Monkey Boy evaluated for ADHD, autism and learning disabilities.  We saw a psychologist in June who diagnosed him with high functioning autism and ADHD.  From the testing, we also learned that Monkey Boy is almost exclusively a visual learner and does great with spatial relationships. Unfortunately, this did nothing as far as school was concerned because it wasn’t considered a “medical diagnosis,” and he wasn’t far enough behind to warrant any services.   His pediatrician put him on Concerta, which he started taking at the end of the summer.

The autism diagnosis confounds me at times because he doesn’t really fit all the criteria.  I vacillate between thinking that it’s not really the appropriate diagnosis versus me just not understanding the scope of the disorder.  It’s not that I don’t want him to have autism; I just don’t want to fall back on it without dealing with the root cause.   It also confuses me as to why none of his preschool teachers thought it fit (I just found this article today, and realize that it does describe some, but not all, of his problems). 

Regardless, I’ve always found something not quite right with his language, and it’s been very difficult getting any satisfactory answers.  After all, I can’t really walk into a meeting or appointment, and just say I feel it in my gut. By language difficulties, I mean things like confusing opposites, not knowing the name of certain body parts, using the wrong word or mispronouncing words, mixing up grammar. To me it’s more than an articulation issue because he spells like he talks.  So, not only is it coming out incorrectly in speaking, it’s also being processed incorrectly.   It’s something that continues to frustrate me. 20111230_34.JPGWinter 2011

The summer between first and second grade was a fairly productive one.  Monkey Boy ended first grade weak in sight words.  I managed to help him learn all of his sight words through the third grade level and moved him up two levels in reading.  He also attended summer school, which really improved his reading and writing ability.  We also did some math work, but at the time, that wasn’t too much of a weakness.  I still find it interesting that he made all of these gains before he started the Concerta.

Thus, he started second grade on a very positive note.  He participated more, had no transition issues and the gains he had made over the summer really helped him academically.  I met with the SST team at the beginning of the year, where they were very impressed with how well he was doing, and that was the only meeting we had that year.  I partly attribute this to the fact that he was more comfortable with a teacher and class he already knew. 

20120519_9_001.JPGSpring 2012Other things that I continued to notice about Monkey Boy during this year were his inability to write between lines and the mixed up use of capital and lower case letters.  While his olfactory sensitivity seemed to improve, his dislike of clothes continued to get worse.  He spent most of his time at home free from clothes.  He still prefers as few clothes as possible, much to my consternation.  He continued to have meltdowns that seemed to stem from hunger, tiredness or heat, which are still triggers today.  His phobias also got worse.  He refused to go into any part of the house by himself, and he became so overwrought at the thought of bugs, that he stopped going outside.  So, while his academic problems seemed to improve for a time, I was still seeing new/accelerated idiosyncrasies and behaviors that went unexplained. 

I dreaded the day second grade ended.  I had volunteered in his classroom once a week, and really gotten to know the kids well (from third grade on up, the use of classroom volunteers seems to decline).  Monkey Boy had thrived under the consistency, and we loved his teacher.  He had also made tremendous progress academically.  I was really worried (with good reason) about what the next year would bring. 

In the next post, I’ll move on to third grade, where everything seemed to really fall apart for my poor 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!

Pouches' Community Corner

This month Pouches learned about a very important resource for families who have lost loved ones to sudden tragedy, an organization called LLOST.

keepsake box

The foundation has helped 44 hospitals in 22 states through their Treasured Memories program. The program sends nurses to bereavement training, and provides or supplements the $55 memory boxes that include clothes, booties, handknot blankets, pictures, foot prints, hand prints, clipped hair and other mementos.

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