Archive for the ‘Early Intervention’ Category

The triplets are all getting therapy through our county’s early intervention program. They have both a general special education/developmental therapist and a speech therapist working with them. The great news is that the triplets are doing great and have reached the vast majority of their developmental milestones. The therapists were kind of curious about some of the idiosyncracies in their development, though… they don’t really imitate, for example… we’ve been doing sign language with them since they were 6 months old and now, at 23 months old, they don’t imitate a single sign, nor do they respond to a single sign. They used to play peek-a-boo, but only in their high chairs – not elsewhere (the girls just recently started doing it elsewhere, too).

They are also pretty far behind in their speech/language milestones, enough that at their 15 month appointment, their general pediatrician noted that we should get them evaluated and get them speech therapy services ASAP.

Since we happen to have an “in” with an excellent developmental pediatrician (for the J-man), I ran the therapists’ questions by Dr. S. His first recommendation was to continue with the speech therapy, but also to get the triplets’ speech/language development formally assessed on either the Mullen Scales of Early Learning, or similar after a solid 6-8 months of speech therapy (that would be… now). He had a few other suggestions, and did say he’d be happy to see the triplets if we thought that would be beneficial (this is a great gift from him – he’s not currently accepting new patients). He said we should definitely talk more after we get the assessment. This all seemed perfectly reasonable.

So… we started the assessments on Friday and finished all except Ellie’s receptive language assessment, which I’m not in the least bit concerned about. The girls, unsurprsingly, came out just about where we expected them to – about 6 months behind expressively (which means they’ve made huge progress since they started speech therapy in January) and only a few months behind receptively (assuming Ellie comes out where we expect her to once we finish her receptive assessment next week).

Sam’s assessment was more significant, however. He tested out as 4 months for expressive language and 11 months for receptive language. Wow.

I talked with Ye Olde Developmental Pediatrician and did tell him that Sam’s 2 year check up with our regular pediatrician is next month, reminded him that we’re still doing weekly speech therapy with all the triplets, and asked him what he suggests we do from here. He said that he thinks it’s important that we remain vigilant with the intensive speech therapy and he suggested we meet and talk more after their 2 year check up. That certainly seemed reasonable. I trust YODP, and I trust our general pediatrician. So I believe we won’t be led astray by either of them (and it happens that they are former practice partners and good buddies of each other, so they trust each other, too).

I’m quite certain this will resolve over time and that we’ve got the right professionals on our team. It’s just… more stuff to do.

Well, it’s always gotta be something, right? I wasn’t having nearly enough fun these days anyway.

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Something I’m not very good at in my life is knowing when to say “No.”  It’s one of my greatest flaws, and, in some ways, one of my greatest strengths – depending on who you ask (and when you ask).   It means that I take a great deal on in my life – usually too much.  It’s a trait I hope not to pass on to my children.  Learning to judiciously use the word “No” is an important character trait, in my opinion, and one I wish I possessed.

At the same time, I work hard not to let “No” be a prevailing word in the world of my children.  I try to find other ways to let them know when something they’re doing isn’t acceptable.  “Zeh Lo Tov” (Hebrew for “That’s Not Good”) and “Not Okay” are two of my first two choices to let them know that what they’re doing isn’t appropriate.  “Stop” or “Freeze” also work.  “No” is my last resort.  Nevertheless, there’s no getting around the fact that “No” is a phrase they hear a lot, whether it’s from me or other people in their lives. 

A couple of weeks ago, Abigail started saying “No” very clearly.  It was not a surprise that Abby was the first to say no – she’s our most contrary child and she’s been saying no quite clearly since her early days in the NICU – she’s only just now found a way to articulate the word.  She’s very cute when she says it because she gets this “otherworldly” tone to her voice when she says it and she gets to be quite emphatic.  She says “no” when her siblings get near her, eye her toys, touch her things, or, you know, breathe the air near her.  She’s getting to be quite pushy and grabby, too.  If one of the others is holding a toy that she wants to play with, she’ll stomp over and swipe the toy out of their hands while declaring: “NO!”  It seems that “No” is a fine substitute for “Mine” (which she hasn’t learned yet). 

Speech delays or not, it was inevitable that they’d learn this word eventually, right?

I did get my shining moment shortly after Abby learned the word “no”, however, when her speech therapist was working with her and Abby was digging through the therapist’s bag of toys.  She pulled out a toy she wanted and she said, “Yes, yes, yes!”  It was the first, and only, time I’ve ever heard her say “yes” ever, but I’ll take it!

Even sweet, compliant Ellie has learned to embrace the word “No” in a way that her mama is nearly jealous of.  On Shabbos, she was playing with some mega blocks on the floor, and Abby and Sam had both given me some smooches, so I looked over at Ellie, who is always willing to give me smooches (!) andI said, “Ellie!  Will you give mommy kisses?”

Ellie didn’t even look at me as she continued to play with her blocks and she said, quite clearly, “Nooooooooooo!”

Wait, what!?  My compliant, angel of a daughter just refused me smooches!?  Really?  What?  I must have heard her incorrectly.  Right?  RIGHT?  Of course right.

“Ellie?  Can Mommy have kisses?”

“Noooooo!!” she responded immediately without looking up from the two blocks she was intently trying to stick together.

My heart broke.  I was simultaneously proud of my daughter for making this enormous leap in receptive and expressive language skill all at once, and yet… a little hurt (okay, a lot hurt!).  But really, hey!  My daughter heard a question, understood it, and responded with a brand new word and in context!  How cool is that?

Even Sam – sweet Sam – the most delayed of the three.  Sam has only 3 clear words, and one… maybe word.  But even Sam is starting to catch on to the “No” concept.  He shakes his head “no” if he doesn’t want something, and he’s started to make the “N” sound if he doesn’t want something.  “Na-na-na,” he’ll say, while shaking his head.  Clearly an attempt at saying “No” despite not quite having the word in his personal lexicon yet. 

My babies are… growing up.  They really are.  *sniff*  How did this happen so fast?

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My SuperStars!

Img_2711_3   Ellie and Abby have been getting physical therapy through the county’s early intervention services since May because of fine and gross motor delays due to their prematurity.  Sam could have qualified, but barely, and it wasn’t worth it, so we didn’t pursue it.  Besides, the physical therapist was here with the girls, so if she spotted something wrong with Sam, she could easily address it with him, if necessary.  As it was, he was moving along at the same pace as the girls, so no intervention was necessary.

The girls did so well with their first few appointments that we quickly moved from weekly to bi-weekly appointments, and soonafter moved to monthly appointments.  At our August appointment, Abby was doing so well that the physical therapist suggested that we might consider discharging Abby at the September appointment if she continued to follow the same rate of development.  Ellie, though, she thought she’d like to continue monitoring for a little while.  When she saw Ellie in August, Ellie had *just* started crawling (literally *that* day) and was dragging one leg behind her consistently.  We were having a hard time figuring out whether there was something wrong with her leg, or if she just hadn’t quite figured out that there were two legs that she could use. 

We agreed that the physical therapist would come to this appointment armed with her assessment Img_2714_2 forms just to see where they fell on the developmental scales and we’d make a decision together about whether to continue with therapy for Abby.  But, we were certain, we’d probably have at least a few more months of monitoring with Ellie because of that darned leg.  She was also, at that point, the one baby not standing. 

Well, a lot can happen in a month!  Ellie not only crawls…  Ellie has completely lost any sign of dragging that leg behind her.  Ellie not only stands… she stands up without pulling up on anything at all!   Ellie not only cruises …  she took two, count ’em, two steps in front of the physical therapist today!  In fact, Ellie tested out higher than Abby on both fine and gross motor skills.  Amazing.  Ellie tested at 11 months for fine motor and 12 months for gross motor.  Abby tested at 10 months for both!  Considering that they turn 12 months on Friday and that they’re 10 months adjusted, that’s absolute perfect for both of them!  (Since Sam isn’t receiving PT, he wasn’t tested, but he probably would have fallen around 11 months for fine motor and 12 months for gross motor- that’s my guess, anyway)

My little super stars have just done so well!  There are little things that they aren’t doing yet that we’d like them to be doing, but the bottom line is that they’ve been making positive progress all along and they are doing great.  No one is remotely worried.  The physical therapist did say she wouldn’t have discharged them if they weren’t still being seen by the special educator every week – this way they’ll still be monitoring their progress in case any concerns creep up over time, but for now – everything is perfect.

I know it’s illogical – because they’re just doing what babies do – but I’m just so proud of my little girls!   

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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.   

Big_problem_little_problemIn 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. 

Taking_charge_of_adhd 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?"

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