ChezPerky

This probably deserves to be two posts, but the reason neither post has been written is because I’ve been trying to write two posts.  So you’re getting one.  So there.

Early Intervention
The triplets had their Early Intervention Assessments from the County Infants and Toddlers Program in April and May.  J had services through I&T back when he was a toddler and we loved them.  I figured that the triplets are doing quite well and seem to be spot-on in terms of their development, but an independent assessment couldn’t hurt.  It’s a free service and we’d been urged by the NICU doctors and staff to take advantage of the program at some point, since we had three premature babies on our hands.  Honestly, I could have taken advantage of the program much earlier, but who has time to coordinate such things?  Anyway, the social worker did the intake interview the last week of April and the therapists came out to do the assessments on May 16th.

My goal in having the assessments was only to confirm that the babies are at developmentally appropriate stages (and obviously to get them help as necessary), but I didn’t have any specific concerns that led to me calling I&T.  So, one baby at a time, the therapists (a cognitive therapist and a physical therapist) played with the babies to see where they fell out on the developmental scale (the Mullen Scale, if that means anything to any of you).  The babies were then 8 months old, and in order to qualify for any services, they had to show a 25% delay in any of the developmental areas they assessed (so they had to test at 6 months or below).  I&T does not adjust for prematurity when they are evaluating children.  SO… guess where my kids, who were born 2 months premature, fell out across the board?  That’s right, they fell out in the 4-6 month range across the board. Sam actually fell in the 7 month range in a couple places with the physical therapist, but by and large, they hit the 4-6 month mark. 

Therefore, my babies qualify for early intervention services.  The therapists have very few specific red flags with my babies.  They would have been more concerned if there had been ONE problematic area of development compared to the others, which would have shown uneven developmental progress, but that wasn’t the case.  Ellie has very low muscle tone, which is of some concern and they’re a bit concerned because her tongue hangs out of her mouth constantly (but even that seems to be resolving itself in the month that has past since they assessed her, interestingly enough).  They’ve called for physical therapy for the girls 4x/month and cognitive therapy for all three babies 4x/month and an "oral/motor consult" with an OT for the girls as well, which will take place next week.   Fitting all this in will be interesting, especially in light of what’s been going on with J, but that’s for the next section.  Suffice it to say, we’ll find a way.  I could turn down services, with the logic that there really isn’t a severe need for services in our case, but any child would benefit from the special care, and it’s not going to hurt them, so we decided to go ahead with it.  We’ll see how it works out.  If it proves to be more stress than helpful, we will simply discontinue.   But by and large, we expect that it will be a largely positive experience.  First therapy appointment is tomorrow morning.

Special Needs
And on to J. First some background:  We’ve been working with J since he came to us to address the needs that he has.  We knew that since he came with a unique set of issues that we may never be able to predict what issues he would have.  We thought when he came to us that he would have separation anxiety and attachment disorder, but neither of those ever materialized with any real significance.  We worried a little when he got close to 2 years old and didn’t have any words, and we contacted I&T, but by the time they came out for their assessment, he’d had an expressive language explosion and was talking up a storm by then.  They did, however, qualify him for services for sensory integration issues.  We had a special educator and an occupational therapist come out for him from January 2006 through September 2006 when he aged out of the program (I&T only goes through age 3).  At that time, we had an IEP meeting to determine his eligibility for continued services through the program that works with children aged 3+, but the answer was, "Well, he’s doing so well with therapy!  He obviously doesn’t need it."    The bottom line was that if his issues were not impacting his educational progress, he would not qualify for services.  Um.  He was three.  But whatever.

At that time, J started at a new preschool, which turned out to be an unmitigated disaster.  By December, J was asked to leave the preschool.  They could not handle his activity level, his impulsivity,  or his sensory issues.  He hated it there.  We hated his teachers.  By mutual agreement, we took him out of the school and found him a new school.  Fortunately, the new school proved to be significantly better in all respects.  At that time, we worked to get J re-evaluated for services through the county, arguing that obviously at this point, his issues did have an educational impact, since he’d been kicked out of a preschool for crying out loud. 

We spent that summer negotiating with the County with meetings and assessments.  And I went on bed rest, pregnant with triplets.  And J was denied services, once again.  He’s a bright child, so he’ll always test well, no matter what else is going on.  And good for him.  But shame on the school system for not recognizing that this is a child who needs help.  And then… well, then I delivered triplets, and things got a little hairy.  But finally, the dust settled, and we realized that he was getting harder to manage at home, in the classroom, all around.  His activity level and impulsivity level were out of control in school.  His tantrums at home weren’t getting any better, no matter what we tried.  And on and on.   

In April, we had an Occupational Therapist come out and do a Classroom Evaluation.  The OT that came out was one of the authors of the book to your left.  She was fantastic and fell in love with J, as everyone does.  She’s a grandmother of twins, and I really "clicked" with her immediately over the phone and later in our in-person meeting.  She made a number of really good recommendations for strategies for  working with J in the classroom setting (our main goal for having her come out), a number of good strategies for ways we could approach his overall wellness, and some longer term suggestions.  One of her recommendations was to have him evaluated by a developmental pediatrician who specializes in attention disorders.  She said, at the very least, it would give us a good baseline for the future, if need be. 

This seemed like reasonable advice, so I called our regular pediatrician, whom I trust more than most people in this world (I’ve known him for a decade…even before we were married, and long before we had kids… and he’s always taken very good care of us) to get his opinion on the report and this particular recommendation.  He agreed that some of J’s behavior might be somewhat outside the scope of "normal", so he referred us to a developmental and behavioral pediatrician who is not accepting new patients, "but tell him you’re coming from our practice; he traditionally has made exceptions for us.  If not, call me back and I’ll see what else I can do for you."  Sure enough, when I called, the message on Dr. S’s voicemail said he was not accepting new patients, but I left a message anyway, explaining that Dr. B said he might be willing to make an exception for me.  Dr. S called me back and said, "How can I help you?"  I said, "Well, Dr. B. said you might be willing to make an exception for one of his patients…" and he replied, "For Dr. B., I think I’d walk of a bridge if he asked me to."  Well said, Dr. S.  Well said. 

And so, we went in to see Dr. S the very next week, May 28th (no other developmental pediatrician in the area could get us in until late July, by the way!).  Seth and I brought all the various reports and assessments that have been done, a copy of our guardianship order, etc.  We gave him a bunch of background about J’s history, as much information as we could, and outlined some of our concerns about what’s been going on.  I said I’ve never had a four year old before, so I just don’t know how much of this is normal and how much of this is off the scales.  And what we really need to know is what needs to be addressed?

The next steps included a classroom evaluation by Dr. S, and then an in-office evaluation with Dr. S. which J had a lot of fun at.  Shortly thereafter, we received the doctor’s preliminary report in the mail and awaited our next appointment with the doctor to discuss it. 

This is our new bible, apparently.  The report included the following in J’s profile:

• ADHD, combined type:  J has always had a challenging degree of hyperactivity, impulsivity and distractibility.  He talks loudly and interrupts frequently.  He does not mind interpersonal space.  ADHD impairs his learning, socialization, and behavior.

• Rule out reading disorder: Speech delays led to [actual county name redacted] assessment.  Subsequently, there was an expressive language spurt and he is now the most talkative child in his class.  However, he is behind the other children in early decoding skills; that is, he does not recognize numbers and letters.  It is not clear how much J’s delay in reading readiness is a true learning disability and how much it is the result of his very short attention span.

• Mood regulation: Inflexible / hypersensitive / high intensity of reaction.  Separation anxiety.  Challenging behaviors. 

There’s more, but those were the main points.  He also did talk about J’s strenths and interests.  He loves sports and dinosaurs and can tell you everything there is to know about dinosaurs, really.  He is a leader and socially engaging.  The report doesn’t say this, but I’ll tell you, he’s also one of the most loving and affectionate children I’ve ever met in my entire life.  He’s awesome, this kid.  I couldn’t ask for a more generous, loving, and kind neshama (soul).  He is a good helper and a people-pleaser.  He wants to be good.  He wants to be praised.  He wants approval.  Like any kid, he seeks love and attention.  He’s amazing and beautiful and smart.  Special needs or not, I wouldn’t want to change who he is, but I do want to help him become the best person he can be.

Key in his list of recommendations for moving forward, Dr. S. recommends a multimodal treatment approach.  This is the most widely accepted approach and has been widely tested and researched by the National Institutes of Health’s National Institute of Mental Health (NIMH) for years.  For more information, click here.  According to the National Resource Center on ADHD:

This treatment approach includes multiple elements which work best together and support each other. These various interventions, or "modes" of treatment reinforce each other and produce the best outcomes for children and adolescents with AD/HD. The elements of the multimodal treatment approach include:

• parent and child education about diagnosis and treatment
• specific behavior management techniques
• stimulant medication; and
• appropriate educational program and supports.

It would be incorrect to think that one intervention, by itself, is sufficient.  Although an individual child might respond to one intervention more fully than other, these should not be understood as "either/or" options.

So, next week, we’re starting a medication trial.  And then the fun part begins.  The hard work will be with behavior management techniques as that will require a lot of work and follow-through on our parts.  That will require that we really stay on top of things.  We’ve already got homework. 

Still, it’s a relief to have a plan of approach.  It’s a relief to know it’s not just us.  It’s a relief to know that there are explanations for a lot of what has been going on and ways to approach it in the future.  Because honestly?  I was running out of ideas.

Many of the people we’ve told has had one of three responses to this diagnosis:

1.  "Well, duh!"  I don’t like this response because it presupposes that anyone other than a physician is qualified to make this diagnosis.  Yes, we’ve suspected it for a while, but one of the problems with diagnosis ADHD is each of the behaviors associated with it are all behaviors you expect in any child, but when you put them all together the pattern presents as outside the normal spectrum.  Just being a hyperactive child is not enough to equal ADHD

2.  "You’re not going to put him on medication, are you?  You should try this special diet / this special treatment / this other thing first."   This is a frustrating response as well because, again, it presupposes more knowledge than my doctor.  In a very short period of time, we’ve learned an awful lot about this disorder, and we’ve got a lot more to learn.  A multimodal approach is definitely the way to go, and telling us otherwise just isn’t helpful.

3.  "Well, you know ADHD is just way over-diagnosed."  Yes, this may be true, but that doesn’t mean that it’s not ever an appropriate diagnosis.  We looked for other alternatives for a long time, but we definitely realize now that this is the heart of the matter. 

Of course, many people have also had wonderful reactions as well, and have been very supportive and helpful, so I’m not complaining.

Dr. S said to us the day he delivered his diagnosis, "A child with J’s profile would make even the world’s best parents feel utterly incompetent."

My response?  "What?  You mean we’re not the world’s best parents?  Because I’m really starting to feel completely incompetent over here!"
Seth’s response?  "Who are these world’s best parents?   And are they willing to take J for a few hours to give us some relief?"