Listening to your “inner mommy”

When we first got IT Boy evaluated through EI  about a year ago, we didn’t realize what kind of an adventure we had embarked on.   As I have mentioned in previous posts, we started with PT, followed 4 months later with OT, and recently have started him working with a speech therapist.  But let’s go back a little and talk about what to do when things are not quite working the way you’ve hoped they would.

When PT started last year, we had some ok days and some downright awful ones.  He was only 4 months old, so what he was doing in the sessions shouldn’t have been exerting him that much, but since he did not have the muscular strength in his core, sometimes he was in utter and complete misery.  I wasn’t able to be around for more than 2-3 sessions per month, so after each session I would call my mom and ask how things went.  Sometimes I would hear that things went well, other times I would find out that he started crying 10 minutes into the 45 minute session and didn’t stop till the session ended.  Maybe the PT wiped his nose (he hates that) or made him do too many baby sit ups…it was bound to be something. 

Not having had a kid going through this, I began to wonder how normal all the crying was.  Let me state right off the bat that in no way did I feel he was being mishandled or abused.  He just was not happy in his sessions.  After 4 months, the PT recommended that he be evaluated by an OT (PT’s concentrate on gross motor skills, OT addresses fine motor issues).  Boy had a wicked head tilt and greatly diminished strength on his left side, and she felt he would benefit from receiving OT.  We had an OT come and do the eval, and she agreed.  We thought she was wonderful with Boy, and luckily she became our OT (she lives up the street from us, so it’s a win win for her as well). 

When he started OT, we noticed that he was working equally hard in OT, but seemed much happier.  It’s a totally different treatment but some things that bothered him in PT were done in OT with no issues.  I wondered whether it was the individual involved with his PT who wasn’t a good match for him.  When we talked, she said very sweetly that my son was just not happy with her, but that’s the way these things worked and it would get better over time.  I asked our babysitter to watch sessions with her, and she felt that maybe the PT wasn’t the right fit for him.  She wasn’t doing a lot of things with him and was spending a lot of time doing find motor things on the floor.  Shortly after that, we found out the PT was pregnant, and that was one reason she was not as mobile as she was pre-pregnancy and was doing reduced activities with him.  She felt these activities were fine and she would be able to continue in this way with him at least for a couple of more months.

I disagreed and contacted the service coordinator assigned to us by EI.  She put us in touch with a new PT who has been God’s gift to IT Boy.  Within two weeks of starting with him, he was commando crawling after not moving at all.  Within a month, he was fully creeping.  I won’t say he’s eliminated his delay, but the progress he has made with her has been steady and pronounced.  Was it because of having a new PT, or was he simply ready to make those steps?  We’ll never know, but I do know that I did not regret the move for a second. 

Now, did I feel horrible about going around the PT, especially when I learned she was pregnant?  Of course I did, I was a pregnant person myself.  Twice.  But I had to put my son’s best interests first.  Namely, when things were not working out, I had to:

* Talk to the service provider directly.  Be your child’s voice, his advocate.  It’s a role only you can take on, so don’t for a minute hesitate.  I’m not giving you permission to be a bitch, more to be informed and stay active.  Understand what the therapist is doing and why.  Have your significant other at a session with you.  Ask a trusted friend to watch sometime.  Tape your sessions, if your provider approves, so you can watch and review them later.   

* If that doesn’t work, don’t hesitate to talk to your service coordinator.  The wonderful woman who performs that job for us took the attitude of “you’re the boss, what you want I try to make happen.”  She didn’t make me feel bad for asking and praised us for taking an interest in Boy’s treatment and not being passive.  We all share the same goal, and that’s helping the little man get better.  Realize that, focus on that, and make sure all sides are working it happen.

*If you’re still not getting a situation resolved, don’t give up.  Try seeking a second opinion, either from another therapist or your pediatrician or neurologist.  Sometimes that can sway others.  Sometimes just being persistent can get your point across too.  I’ve heard of it happening, so never feel like you have to compromise if you don’t think you should. 

Back to the communicating with your provider part - remember, therapy is only as good as it is unless you take an interest in what is going on and keep up with the practices when the therapist is not there.  New PT had me crawling around on the floor and up and down stairs at our first session, because she wants to make sure parents keep up the work outside of therapy.  Frankly, she’s sweet and adorable, and is so kind to my son, but I’m a little scared of her all the same.  That works for us, because I listen to everything she says and repeat it at home all the time. 

So, today’s IT lesson is to listen to that mommy inside of you to help focus on what your child’s needs are and how they can be met.  And don’t forget that inner mommy needs a little chocolate every once in a while.  Valrhona is nice, but Ghiradelli will do. 

 

He’s a genius, I tell ya

IT Boy had his OT evaluation the other day.   Forgive me if I sound vainglorious, but he had one huge “get” during the eval.  The OT gave him a cookie, and, get this, he ate the whole cookie all by himself.  Yup, no parental assist there.  I’m not exaggerating here, this is not something he has done by himself, so this was a big deal.  And, he’s shown he’s following in the family’s cuilinary footsteps.  Now, if he could have only had some vanilla ice cream to wash the cookie down…

 

The One Thing

It’s been one year, give or take a week or so, since the Boy started his therapy regimen to battle hypotonia.  This week, he’s had evaluations with his OT and PT to review where he is and where he should be.  It’s encouraging, and it’s not.  He’s made significant gains in some areas, but you can see others where he’s far from where he should be.  He can do so many things that he couldn’t do when he started PT a year ago.  For instance, he’s a speedy crawler, so much so that his grandfather nicknamed him “Scooter”.  He’s cruising on furniture, and crawling up stairs unassisted.   But he’s not standing or walking.  Yet. 

To put everything into perspective, I sat down the other day and watched the video I took of him when he first started PT.  There he was, a floppy and pale little boy being put through things he wasn’t entirely happy with.  The PT liked to see how his muscles moved, so he was stripped down to his diaper.  I had to bite back tears, seeing now what I didn’t see then, and that was how helpless he looked when he was trying to do things.  She used to do little baby sit ups and other activities to get him conscious of his feet, to help him know where his plane of movement was.  Sometimes, he was frustrated.  Oftentimes he would cry, so much so that we had to stop the session and have the PT comfort him.  I must have compartmentalized or channeled my emotions during these sessions because they affect me much more now than they did then. 

I do recommend that parents going through this with their kids tape a session every month or so, to give a reference point on how much progress has been made.  It’s hard not to be discouraged.  I push myself to focus on the achievements, and having to put what needs to be achieved in a positive light.  Like, how can we help him get there, not bemoaning the fact that he isn’t there yet.  It’s hard, but no one said this was going to be easy. 

 

Talk to me

IT Boy has started speech therapy.  Two months ago, his occupational therapist (OT) recommended that he be evaluated for speech delays.  Some of our shared concerns were feeding delays due to his hypotonia/low tone and his not pointing.  During his subsequent speech evaluation, I could clearly see that he had many more delays than just those, and not surprisingly, he was approved for therapy 2 days a week. 

Today was his second session.  His therapist uses the Hanen Program called It Takes Two To Talk. I don’t know too much about it yet, but it seems to mesh with how I want to communicate with the boy.  One evaluator we saw early on in the process discouraged me from anticipating his needs.  For instance, when he wants his bottle, I can tell because he goes “mmmmm” and flaps his hands.  The evaluator suggested that I wait as long as I can before I give him his bottle to encourage him to either point or “sign” a request for the bottle.  That seemed plain annoying to me.  I know he wants the bottle, I’m going to give him the friggin’ bottle.  R., his current speech therapist, said that when you show him the bottle, engage him in a conversation, however one sided it might be.  “Hey IT Boy, here’s your bottle…do you want your bottle?  Do you want to drink from your bottle?” and then give him the bottle.  Her techniques seem more flexible, and more in line with how I want to respond to the boy.  I’ll write more when I understand the method more (how ’bout Hanen For Dummies, anyone?) but for now, I’m happy. 

It’s so crucial to have any therapist working with your child clearly explain both her philosophies and techniques, but also to articulate her expectations for your participation, both during the session and as follow up outside of session times.  You need to continue and reinforce what’s being done in therapy for maximum results.  So many parents, according to my therapists, think it’s break time for them and don’t get involved.  Worse, they have no idea what’s being done, so they can’t replicate it later.   Also, you need to make sure your other caregivers, including your spouse/lifepartner/whatever (that’s you, Mr IT) are on board as well. 

The best part of speech today was unscripted.  Boy was playing with a tape dispenser, and R decided to use it as a problem solving exercise.  “The tape is sticky, how do you get it off your hands?”  Boy contemplated it for a moment, and flung it down the cleavage of his therapist.  Way to go, IT Boy!  That’s going for the gold!

 

Late Bloomer, or Truly Delayed?

Susan Etlinger’s most excellent blog The Family Room has a great post about what to do when your child is not meeting his or her milestones.  It’s a horrible feeling for any parent to think that your child might have something wrong with them, but it can be made worse by well meaning others who tell you there is nothing to worry about.

I remember when Little IT was 2 years old and she had a vocabulary of about 5-10 words, which is way behind where she should have been at that age.  Everyone told us not to worry, she would catch up, there were no problems.  Even her pediatrician said there was no cause for worry.  It wasn’t until I talked to a co-worker who said that her son, born one day before Little IT, asked her why his babysitter didn’t come to his birthday party that I knew something was off.  Even if Little IT had been thinking that, and I couldn’t believe she did that kind of thinking, there was no way for her to express it.  I took it upon myself (well, Mr. IT did help) to call Early Intervention in NY and have her evaluated.  The evaluation came back that she did have a speech delay, but it wasn’t a huge one.  It was as if everything in her brain was working right, but when it came to sending it out through her mouth, it couldn’t make the connection.  She was borderline, but they approved services for her because they were concerned that if the connections were not made, eventually it could lead to huge frustration and delays that would present themselves in other ways.

I cannot tell you how grateful I am that this conclusion was reached.  Little IT received speech services for a year, and within that time caught up to and exceeded milestones for her age.  Could she have been just a late bloomer?  Would she have caught up anyhow without the services?  Maybe.  A lot of people, well meaning but ill informed, said that to us.  But here’s the thing - therapy wasn’t going to hurt her, and we benefited so much from having an advocate in our corner.  Someone to watch her and make sure she was developing properly.  Speech therapy was a win win for us, and I’m so glad I didn’t listen to the naysayers.  It’s what got us up and running with IT Boy as quickly as we did, and he’s certainly reaping the rewards that have come from his therapies.  Why, just the other day he started going into down dog position, while climbing the stairs.  It’s wreaking havoc on my sanity, but I’m loving every minute of it. 

 

Begin at the beginning Part 2

When we last saw the IT Family, we felt we wanted to have Boy evaluated for suspicion of a developmental delay.  What do we do now?  Parents are so lucky now.  When Little IT was 2, she wasn’t talking.  Hard to believe now that she’s an 8 year old motor mouth, but at that age she had 5-10 words when you should have many more.  Back then, they didn’t have much available about EI on the web, so I used the doctor’s office as a resource.  They had many pamphlets on early intervention and how you go about getting evaluated to receive services.

To back track, Early Intervention (not the caps here) is a comprehensive statewide program to support children under the age of 3 with disabilities, imparements or delays.  It’s a way to provide free or low cost services to help meet the special needs of a child.  EI in NY functions as a single agency that can coordinate services and policies among the several agencies which provide services to infants, toddlers, and their families.

Anyone can refer their own child into early intervention by themselves.  You can also be referred in by a doctor or specialist, or a teacher.  If my doctor didn’t have the info on EI, I might have gotten it from the preschool that Little IT attended.  Of course, it’s not a consistent thing everywhere.  My sister in law who lives in Massachusetts was asking about a program like that at her child’s nursery school and they had never heard of it.  A simple Google search showed me there was indeed an EI program in Mass, so it’s unfortunate that her school didn’t have the resources to help children who might need it.

So, lesson 1, if you have concerns about your child’s developmental progress, or a doctor has suggested it, find out what early intervention like services are offered in your state.  I dug up all the info on Little IT’s programs, and did some Googling to find the regional office that supported EI and made the call.  They are a state agency, so yes, they can be bureaucratic, but at the same time, it is a structure, and structure is what you need here.  They set up a series of phone interviews and determined that evaluators should come and assess Boy for the program.  Net phone time probably added up to two hours.  I selected an agency to handle the evaluation, and scheduled time for the evaluators to work with Boy.  This took place from late December to early January, and was longer than it should have taken due to the end of year holidays.

At the same time, at the suggestion of my pediatrician, I set up an appointment with a neurologist.  Why, I’m still not sure.  Part of it was to make sure that his low tone did not have an underlying cause that needed to be treated by means other than therapy or worse, could not be treated.  This is where the Googling can get you into trouble.  You see words like “muscular dystrophy” and “cerebral palsy” and even cancer when you search for this.  You can easily get yourself alarmed, and is this one place where worst-case scenario planning will not do you any good.  Anyhow, after the neurologist examined Boy, he wrote a diagnosis of HYPOTONIA on a big prescription pad.  He told me that in case EI didn’t accept him into the program, this would help me appeal.  It would also be something to share with the evaluators so it got into the official records for the case.  Not sure if it helped in the end, but I can’t imagine having a medical evaluation going into EI would hurt.

It’s worth noting that at least in NY, Early Intervention is done totally without cost.  There is no cost to be evaluated, and services are provided gratis as well.  That’s one reason we didn’t hesitate to evaluate him.  We knew that we weren’t going down a path that we couldn’t return from, financially or medically, and felt like we weren’t risking anything by going through the process.

After the evaluation by the two specialists, it was decided that Boy could benefit from physical therapy, 2 times a week for 45 minutes a session.  We had a meeting at the house with a representative from EI, the County Board of Health, and the lead evaluator on the case.  We signed enough paperwork to wipe out a small rainforest, and selected a local agency to administer the services.  It would be another week before I was turned over to this agency and we set about finding a PT to work with Boy.

The saga continues - in future blog entries I’ll talk about starting PT, adding more services, and what to do when you think services, or in Boy’s case, the service provider isn’t working out.

 

Begin at the beginning Part 1

As promised, here is the first of a series of postings on our experiences in helping my son with his hypotonia.

From the beginning of IT Boy’s life, it always seemed like there was some new crisis looming but never occurring.  He was born in early September 2007 weighing in at 9lbs 11 oz and seemed to be perfect, albeit the size of a small turkey.  He was placed in the neo-natal intensive care unit (NICU) at birth at birth, because he had some suspect bruising, a low grade fever and unfortunately, misplaced test results from me that would have answered some questions.   I had gestational diabetes during my pregnancy, so we were prepared for the idea that he might have to be admitted there, but nothing that was happening seemed to be a result of the diabetes.  He was born around 2pm, and I got to hold him around 4pm, but it wasn’t until after midnight that he was able to come into my room.  We spent most of the night worried about what was happening to him in there, playing a waiting game in my room.  What we didn’t know was that another child had been born with a serious heart defect and they were trying to stabilize her before airlifting her to a hospital in NYC.  We thanked our lucky stars that we were not dealing with something so serious and maintained our patience as we waited to hold our son.

When we did see him, he looked bloated to within an inch of his little life, like a Jabba the Baby Hut.  He spend his entire hospital stay in NICU, receiving antibiotics and the occasional treatment for hypoglycemia.  There’s a picture of the two of us together that a friend framed for me.  It shows me holding him and us looking at each other.  He’s huge, with little squinty eyes and has his right arm wrapped up and immobilized in a brace to facilitate intravenous treatments.  It’s like he’s showing it to me and telling me everything that he’s been through.  “Hey mom, look what they did to me!  Boy that nurse Kathy is cute!” I treasure that picture, because you can see the two of us falling in love for the first time. 

 After he was released from the hospital, we got a report of all the activities that had gone on during the stay.  We were fully conscious about what was happening but it was interesting to see it in a progression path, as it were.  It was as if something looked like it could have been something, so they did this, but then something else came up, so they added another treatment, but in the end, it amounted to little and we had a perfectly healthy little boy. 

Over time, he had trouble gaining weight.  Part of that was I wasn’t able to give him all the nutrition he needed by nursing, and eventually had to supplement to put the calories into him.  Boy lost more than the recommended weight, and his pediatrician always said he felt (insert word of choice here) light, not sturdy, not meaty, and floppy. 

It’s the last one that came to haunt us as time went on.  Even when Boy started gaining weight, he had a floppy quality to him.  The first sign of what was to be called hypotonia was when he had trouble meeting the milestone for holding his head up.  All along, the pediatrician said that if he didn’t get stronger soon, she would recommend us getting him evaluated through early intervention.  It wasn’t until we saw another older doctor in the practice (because his regular doctor was out and Boy had a fever that needed to be treated) that his concern over Boy’s “low tone” spurred us into action. 

That’s not to say that his main doctor didn’t make us act.  We seemed to be going in a path where even though he wasn’t doing things on time, there didn’t seem to be a need for action.  But after this doctor said it, we decided the time was right to seek outside help.

 

Stop Me If You Think You’ve Heard This One Before

When I started this blog, I really wasn’t sure what form it would take.  I watched how our publisher Joe Wikert went from starting a blog at the insistence of author Robert Scoble (because how could he sign with a publishing house where the publisher wasn’t blogging) to finding his voice and making a positive contribution in the blogosphere.  I wanted the same kind of relevance, but at the same time felt that his message wasn’t going to be my message.  Sure, I work in book publishing, and I have a lot of views on the state of the industry and content development, but it’s not all that I am about.  Soon after I set up the blog, I attended BlogHer, and saw that blogs really did come in all shapes and sizes, and the most important thing to do is find your passion.  Which, for the most part, is what I strive to do.  This isn’t solely a publishing blog, or a mommy blog, or a social media blog.  It’s Ellen’s blog, and that means it’s all things Ellen.  I’m going to talk about trends in book publishing and in the next breath gripe about how hard it is to set up a playdate.  Because that’s my life, and if I can’t blog about my life, what else is there? 

There is however one part of my life that I haven’t talked about, and that’s because it involved IT Boy.  I’ve alluded to some things about his life, but I haven’t really told the full tale, which up until now I’ve been comfortable with.  He’s going through some things, but to respect his privacy, I haven’t blogged about them.  Something happened recently that made me reconsider my stance on that.

Last week, I encountered someone in a store shopping with her son, who looked to be about 6 months old.  She saw IT Boy and asked how old he was and was he walking.  I answered that he is 14 months old, and no, he isn’t walking.  I’m not sure why those words always come out of someone’s mouth when asking about my son.  It’s a litmus test that I don’t recall signing up for and I usually answer with a scowl on my face.  In this case, however, the woman had a reason for asking.  She’s felt her son was a bit, in her words, floppy, and isn’t making any of his milestones, and her doctor suggested she have him evaluated.  She was at a loss, and had no idea what to do next.  Upon hearing this, my tone did a 180 and I sat down with her and explained the process that we went through when IT Boy was 3 months old and that continues to this day.  She was so grateful to hear from someone who had been there and done that, which I have.  She said she was searching on the Internet and didn’t find much.  I told to her to stop searching WebMD and Wikipedia and all those sites until she got him evaluated and she knew what they were dealing with.  We parted with her taking down my phone and email, with a promise to call after the evaluation.

She found herself in a place that I know all too well.  IT Boy was always a bit floppy and it didn’t really concern me all that much.  His doctor remarked about it visit after visit, and we had many at first, and suggested we put him through Early Intervention (EI) at 4 months if his situation did not improve.  I wasn’t overly concerned, even though as time went on he wasn’t hitting all his milestones.  It wasn’t until we took him to another doctor in the practice who asked who in EI had evaluated him and we had to say we were not planning on putting him into EI until 4 months that the panic button went off.  The other doctor said this was a low tone child who needed help pronto.  That led to the first phonecall with EI, and the beginning of the adventure that continues to this day.

I’m certainly not claiming to be an expert on hypotonia or early intervention, but what I am is a parent who is going through a situation that others might be facing.  I can help others by talking about how we have faced things and the choices we’ve made.   In fact, the same day I decided to do this, my co-worker IMed me to say that her friend was told by her doctor that her child was floppy - what did that mean, what should she do, etc etc.  She wasn’t finding anything helpful online, and she was panicking.  Gee, I know exactly how she feels!

So, consider this a heads up that “Confessions” will be talking about something new and hopefully helping others in the process.  My game plan is to talk about how and when to make the initial contact with EI (that’s what it’s called in NY, but it has other names elsewhere) to begin the process, how the process worked, and how we came up with a treatment plan for my son that we continue to follow.  We’re not out of the woods, but the good news is that it is helping IT Boy who is making great strides, literally and figuratively.  He’s still not walking yet, but I bet he will beat his neurologist’s prediction of 20-24 months.  Sometimes a mother just knows, you know?