Chez Perky

Are They ALL Yours?

So at my appointment with ye ol' Developmental Pediatrician this morning, I forgot to bring my checkbook.  I *hate* being "that" woman.  That disorganized woman who can't get herself together and have all her ducks in a row when she leaves the house in the morning.  HATE IT.  So I told Dr. S. I would drop a check off in the afternoon and he said, "Or just drop in the mail, whatever."

I'm short a nanny today; she called in sick because she fell down a flight of stairs yesterday, poor thing.  I'm not feeling well myself, so I wasn't planning to go in to work (I didn't go in yesterday either), so it's not the end of the world, though I feel terribly for her.  Seth had stayed with the babies while I was at the pediatrician's office and was home through lunchtime.  After he left, I got the babies down for their afternoon nap and went to get some work done and spoke (AGAIN) with Dr. S. about J's school placement for next year because we haven't settled that yet. 

I felt like a terrible mother while on the phone because Abby, who hadn't settled down for her nap yet, was screaming her head off.  I told Dr. S. that I was feeling like the world's worst mother (AGAIN) and he said, "Let's make something very clear:  You are a very good mother.  You have a very challenging four and a half year old and triplets on top of that.  That's a lot to handle and I'm not sure I'd handle things any better than you are!  You're doing a phenomenal job."  I think Dr. S. is going to get real tired of us REAL SOON NOW.  (Abby, by the way, did not settle down on her own, as Dr. S. promised she would.  After I got off the phone with him, I went down held her for a minute, put her back in her crib and she went right to sleep)

The babies took the longest nap in the universe.  Sam woke up at 3 and the girls didn't wake up until 3:30.  By 4, everyone was fed and packed up into the car and I was realizing how stupid it was to drive out into rush hour traffic to deliver a check, but I though it would be a fine opportunity to go buy some baby gates and we'd have PLENTY of time to get home for dinner and bed.  Hah, I say, Hah!  So I drove off to deliver the check to ye ol' Developmental Pediatrician's office and from there went to Buy Buy Baby where I met my mother and J, so that she could push a cart while I pushed a stroller so that I could buy some baby gates. 

This was a huge, HUGE, HUGE mistake. As soon as J was in the store, he started begging for a toy and I said no (not in a mean way, but I was firm that he wasn't getting a toy - I did buy him a pair of goggles and two lightning mcqueen booboo cold pack thingies, but he just got two new toys yesterday and I do NOT need more stuff in my house).  I was not there to buy toys, I was there to buy baby gates, so it's not like I was flaunting baby toys in front of him either.  I was just buying baby gates.  And J threw a fit of epic proportions.

And my mother.  My mother. Did. Not. Help. 

She stood there telling him that he could pick out something that he wanted for his birthday (meaning, we wouldn't be buying it today - his birthday is in September).  Hello?  The kid has ADHD.  Kids with ADHD have no sense of time.  They have no ability to work with delayed gratification.  Even if you don't know this about ADHD because you haven't read the manual yet, you've known THIS kid for nearly four years and you know that THIS kid does not function well with delayed gratification!  He's been nicknamed "Instant Gratification Lad" since we got him!  So this proposal only infuriated him more. 

I'm talking throwing himself on the floor, kicking, screaming, crying, threatening, begging, pleading. People staring, store employees offering candy.  It was not pretty.  So I gave up on finding all the gates I needed, settled for three that I knew would work for the immediate needs I had and we made our way to the front, which is how I get to the title of this post.

There I am with three babies, a screaming J-man, and a mother pushing a cart full of baby gates.  And a store employee sees the three babies and says, "Oh my gosh, are they ALL yours!" (completely ignoring J, and pointing specifically to the three babies)

And I actually said it. 

"No, really, I just enjoy going out with three random infants.  It's fun for me."

She was flustered for a second, but quickly recovered and was fawning all over the babies, all the while J was screaming his head off.  Literally, I think.

As it turned out, we got lots of attention, and lots of help, and the store employees helped me check out, followed me out to the car with my cart, loaded everything into the van, and took the cart back for me, which was fabulous, considering the screaming J-man.  Actually, it was fabulous even NOT considering the screaming J-man.  But leaving the store only infuriated J even more (if that's possible?) and we could not safely get J across the parking lot to the cars.  I swear, I almost called Dr. S. to find out what the hell to do, but seriously?  That man has GOT to be sick of me by now.  And really?  I had to have done SOMETHING without him before, right?  I survived without him before June, so I need to be able to stand on my own to legs now. 

Meanwhile, it's now 5:30.  J's fit has gone on for 45 minutes.  Ellie's had a critical diaper failure and I'm changing her poopy diaper in my car.  My mom finally got J to my car sort-of-safely, but he's fighting her every inch of the way.  He's still screaming bloody murder.  NOTHING will calm him down.  We can't let go of him, for fear that he will dash back across the parking lot to get back into the store (he is still harboring hopes that if he gets back into the store, he can have a toy).  It's past 5:30 at this point.  5:30 is the triplets' dinnertime.  They are starving and starting to scream, but J won't get into a carseat. Given a choice between my car and Grammy's car, he won't make a decision.  I make the decision for him and try to get him into my car, but he is stronger than me, literally, and there is NO getting him into a car seat against his will.  He's almost four feet tall (I'm only five feet tall) and almost 50 pounds, and VERY strong.  I have no way of controlling him when he's like this.  I tell him he has no choice, and my mother chimes in, "It's okay, do you want to go to Grammy's car?"  Thanks a lot, mom.  Thanks for not contradicting me. 

My mother took J to her car (just two cars down) and looked like she was doing okay, so I started to leave with the screaming trio, but as I was leaving, I realized that she still didn't have J in the car, so I pulled behind her put the hazards on and got out of the car.  J took one look at me and settled down into his car seat.  I was really deadly calm, so I don't know what he was scared of, but he must have known I was very serious by that point.  By then a car had pulled up behind my van and the woman inside was glaring at me, in lieu of pulling around my van (plenty of room to do so).

We did, of course, get home.  The babies did, of course, get fed.  They were very difficult to get down to sleep because they were over tired.  J was extremely emotionally labile until HIS bedtime and very hard to get down, but all is well.  They are all sleeping peacefully now, at last.

Are they ALL mine, indeed?  Yep.  All four of 'em.  Glare all you want.  I work hard for these kids.  See if YOU can do any better. 

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P.S.  When I got home, there was a message from Dr. S. on the voicemail:
"Hi this is Dr. S.  I just wanted to say Thank You for dropping off the check today, but that was completely uneccessary.  Next time if that happens [Note: I hope there won't be a next time] you can just drop it in the mail.  You've got more than enough on your plate.  I hope you didn't make a special trip out. Gosh.  You're, well, you're good people.  Just, you know, don't do it again.  Thank You." 

Even the Best Parents...

When we were first given the ADHD diagnosis for the J-man, Dr. S. told us "A child with J's profile will make even the best parents in the universe feel completely incompetent."

Yep.

We're into week two of our medication trial and on our second medication.  The first medication MIGHT have been having some side effects.  We THINK.  But we're not really sure.  I would have liked to have seen a few more days of the medication to be sure that it wasn't just all a big coincidence.  But J refused to take it 3 days out of 6.  So no dice.  To get him to take it, we bribed him heavily, and on the days he didn't take it... Oh the fits that ensued when the bribe was not forthcoming!  Absolutely indescribable! 

And so... we moved to a patch. And he's VERY proud of his "sticker" which he knows he's not allowed to take off and he knows he's not allowed to show to anyone (it's on his posterior, so showing it off would be quite rude). 

Day one of the patch we used 1/2 a patch and got limited feedback from school, so Saturday we moved to a full patch.  Well, we did NOT see our son that day at ALL.  We saw a withdrawn little boy who was listless and sad, tired and lonely.  Not at all our happy, bouncy little monster.  I did not like this little boy much at all.  I mean, I loved him, of course, but I missed my J-man.  Where had he gone?  Is this what I was doing to him?  I saw little glimmers of my beautiful boy whenever he got to do something physically active, but so long as he was sedentary, he was listless, withdrawn, quiet, introspective, sniffly, and sad.

Sunday we tried again with a whole patch, knowing he would have a very active day as we went out to visit Jess and her five little monkeys.  And he was totally fine.  He was calm, but happy.  He was a good listener.  He was active at appropriate times, but not out of control.  He played nicely.  He was animated.  He was a little bored when the other kids were asleep, but he generally had a GOOD time and was my J-man again.  It was awesome. 

Today?  We gave him a full patch again.  I called the school just now to see how he's doing and he's BOUNCING OFF WALLS.  Can't sit still, can't listen, can't behave himself, can't control his behavior, totally impulsive. 

I just. don't.  know.  what.  to.  think.

His fits before and after the medicine take effect and wear off are completely out of control, but we'll approach this with behavior management therapy.  This will take time.  But the medication?  I'm just... I'm at a total loss.  TOTAL LOSS.  I feel unbelievably incompetent.

UNBELIEVABLY INCOMPETENT.

Meanwhile, we've joined CHADD. I've got to-do lists. I've got a notebook started.  We've got reading lists.  What more can we do?

Early Intervention and Special Needs

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?"