#13 (Band Helmet/ MCDHH)

There was so much information to share in the last post, I decided instead to do one for the more major stuff and follow up with this in order to share some of the other things going on with Mr. Finnegan and his all-around development.

Let me start off by talking about my least favorite “mom conversation”: baby milestones. (not that dads don’t talk about this, but I’m just speaking from my experience with other moms). This topic comes up very often in all sorts of ways that range from innocent talk celebrating a babies newest “trick” to an all out “whose kid is more advanced” contest. I noticed this a lot more when Kayla was first born. Playground conversation often centered around how old the kids were and what they were or were not doing yet. No matter how innocent, I’ve always been very uncomfortable talking about this because on the one hand, I am very proud of my kids and want to celebrate them as much as anyone, but on the other hand, those conversations can also cause parents unnecessary worry if their kid isn’t “performing”. I usually end up countering any “celebration” with something comically deprecatory (Yea, Kayla’s vocabulary is quite extensive; most of the time she uses it to create a new, colorful way of telling me off). Anyway, I touch upon this because with Kayla, I kept hearing from everyone how “advanced” she was at every milestone. “Wow she’s sitting up at 4 months- that’s awesome, great job mom!” or “Oh my goodness, she’s walking at 10 months! You guys are doing a great job with her!” Now, of course, it is always nice to be told you are doing something right, but honestly, I think we give parents of infants and toddlers too much credit (good and bad!) sometimes.

Everyone knows that each baby is different and remembering that and remembering that there is a reason why the lists of all of babies’ first milestones have ranges (sometimes huge ranges) is very important.  I know this. I’m a reasonably intelligent and rational person, but it has taken me until recently to stop freaking out every time Finn goes past an age when either some stupid chart or Kayla’s records say she was doing something and he isn’t there yet. Our E.I. teacher constantly reiterates that it is about PROGRESS.

Rereading this makes it sound like Finn is way behind or something and that is not the case at all. He struggled a bit with eating at first, but now is eating like a pro.

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Loving his tofu just like his sister!

Cognitively he is doing fantastically. He is “visually attentive” when we sign or read to him- looking from the object/book to our hands and back again- showing that though he doesn’t understand it yet, he knows that our hands are communicating. When he wants his milk and starts fussing, he calms when we sign milk to him and has even started this really funny, flamboyant version of the milk sign himself.

He LOVES when someone fluent in ASL signs to him. It is so cool to see his rapt attention on their hands (in contrast, his eyes tend to wander when I am signing, almost to make a point of letting me know that he is bored with my slow-as-heck signing).

One thing that he is still working on is strengthening his core (just like mama!) and sitting up. He absolutely hated tummy time as an infant and would instantly scream & cry (and, sorry, but knowing he couldn’t hear and then putting him in a position where he couldn’t see either was not exactly something I felt OK doing to the poor kid). He was also born with low muscle tone, which I thought had to be my fault, but our Physical Therapist said that it is just the way some babies are born. Kayla was born with high muscle tone- luck of the drawn apparently.

To help with this, we have added to our Early Intervention team a physical therapist to pump some iron with him – and by that I mean Itsy Bitsy Yoga : ) Dan is like a baby Yogi with Finn and his routine and he has made leaps & bounds already. He is trying so hard to sit up and he is ALMOST there, but again, it’s about PROGRESS.

Even with that progress, we (meaning Dan & I, his pediatrician, E.I. & his other specialists) all agree that his head is still a bit flat and we need to make sure it has rounded out before the surgery in February. There is a chance, especially now that he is starting to sit up, that it would do this naturally, but that was not a risk we wanted to take with a surgery coming up that will include drilling into that beautiful skull.

We made the decision to get him a Band Helmet back in November at his 6 month check up. Early Intervention had given us the name of a PT at Children’s who does the Band helmets, but then our pediatrician recommended one in New Hampshire (I forget the exact reason, it may have been availability for appointments?) and we made the big mistake of taking that recommendation. I have said it before and I’ll say it again: if you need anything done efficiently and want the most trusted people GO TO CHILDRENS! Every time in the last 7.5 months that we have gone somewhere other than Children’s we have been disappointed in one way or another to varying degrees. Whether it be atmosphere or competence, they have never let us down. We are KICKING ourselves for getting talked into going elsewhere.

I won’t say the name of the place we went because I don’t want to tarnish their reputation too unfairly -that being said, if you are given the option to go to a PT in New Hampshire, I am more than happy to tell you privately the company so you can have a heads up. The problem was that this started out being a little bit time-sensitive to get his head rounded, but it being mid-October and the surgery not being until February, we thought we had a big enough buffer- assuming the PT facility would understand that we were running against the clock. Well, you know what they say about people who assume.

Our initial appointment was Tuesday, November 5th (after TWO phone calls from us and one from our pediatrician trying to get us in as early as possible). It went smoothly and the Physical Therapist seemed to know his stuff. Thankfully, the office used laser technology to scan his head and make an exact replica (on screen) to make sure the helmet fit Finn precisely. This is in contrast to the “old” way- the way some offices still do it- which is covering the babies head in plaster with only his mouth left open and making a mold to send in.

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Getting ready for the laser scan; looking like a Teletubby.

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Entranced by the laser beam even with mom & dad doing silly dances and faces to get his attention.

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As they scanned FInn’s head, a 3D image of his exact skull popped up on the screen. Super-cool.

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If the facility does not have the scanning technology, this is what they have to do to make a mold of the head. We did not know about this and just lucked out by getting a place with a scanner. Something to keep in mind if you are considering a PT for a Band helmet.

We told the PT about Finn’s surgery and how important it was to have his head rounded by then and he assured us that insurance should approve it by the end of the week and then they would send in the order and it would be in about 5 days later. Sounded great to us. By that time marking, Finn would have the helmet by the following Friday (Nov. 15th). Even if it was early the week after that, we were still on a good pace.

Being the annoying parents we are, we followed up at the end of the week to make sure everything was all set (more worried about insurance holding us up than anything else). We got no call back, but when we contacted Harvard Pilgrim, they said they had approved it already. So, we called the PT back early the next week; again no call back. Dan finally got in touch with them and the secretary, after looking around the office, finally said something like: “oh, yeah! We got the insurance approval right here. We just need to send it in.” Hmmm. So, OK, a time-sensitive helmet that got its approval from insurance almost a week ago is still just sitting there? Fine, if they sent it in that day, it was still only a week or so delayed. Let’s fast forward to when we got the helmet: December 6th. A month after the appointment. Only a couple of weeks off, but when we followed up with them over that couple of weeks at least SIX times, we got zero call backs. No idea if the delay would be a short one or if there were any issues where we’d have to start the process over again. Trying to decide if we should just go right to another doctor, but not knowing if we’d get a call the next day that it was in. Finally, Dan called and left a very strongly worded message on their machine and at 7am the next morning he got a call from the PT himself apologizing because HE HAD BEEN ON VACATION. Seriously????!

Anyway, we got the Helmet Friday and Finn’s been doing great with it. We got one Bruin’s sticker on it and hoping to find big, gold number 55 on the back in honor of the great Johnny Boychuk.

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Couldn’t you just eat those cheeks right up!?

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Go BRUINS!!! Hopefully this won’t be the last hockey helmet one of my kids wears!

Kayla continues to be a very loving big sister and can make him laugh harder than anyone with her antics. Actually, one way I get him to tolerate sitting in his Bumbo seat for an extended time is by putting on dance music and having Kayla give a performance for him. Her dancing is quite…energetic…(think Zumba on Speed)- and he will sit and watch her and giggle for so long.

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This week we meet the new Speech-Language Pathologist who will be joining our EI team after the surgery (I think this is Finn’s 4th SLP? Bring them on, I find SLPs to pretty cool people haha). He works in a Lowell school too and his reputation is fantastic. We’ve heard his name from all different areas – Children’s, EI, Finn’s school- so it’s exciting he will be helping Finn learn how to hear and understand what he is hearing. He is an AVT SLP and he is open to the family incorporate sign into his therapy & every day life, which is a relief as this is a must for us.

We also recently got to meet with someone from MCDHH.  We have now met a few people who work for them and, overall, they are a bunch of fantastic people. Our case manager (if that’s what she’s called?) was nice, but seemed a little overwhelmed with cases. I guess they each have hundreds of people to service. Yikes! Our connection to them will be vital when Finn goes to school; whichever school we think fits him best at that point. Because of the nature of any public service that has people who are overworked, I am nervous that things with Finn could slip through the cracks and I know we will have to be extra vigilant when he is older, especially if we feel strongly about sending him to a specific school. As of right now, I would love for him to go to Lowell Public Schools if he is having success with the CIs. Considering the good things I’ve heard about their deaf & hard of hearing program and that I work in the system, I am hoping it won’t be a problem.

I have to say, I was a bit disappointed in our appointment for a couple of reasons. One, it made it was made clear when the appointment started that we are one of MANY clients because she asked how Finn’s surgery went and we had to point out that he hadn’t had the surgery yet. The woman apologized saying she must have just reviewed at the wrong file. Not a huge deal, especially considering the amount of clients she has. It just reminded me that we are going to have to be on top of our game.

There were a couple of things that made me squirm in my seat and I am hesitantly writing about it here. I do not want to make anyone feel badly or talk negatively, but I also think sharing what made me squirm might put it out there for people to consider when they are talking to parents. One, when I mentioned my inclination towards having Finn go to Lowell schools (after sharing that I taught there) the first reaction was “wow, people are usually trying to get out of Lowell!” I do not think this was meant in any harsh way besides honest surprise and maybe that has been her experience with Lowell, but I am very sensitive to what people say about our amazing school system. Also, we live in a town without any programs for deaf children, so I was confused as to why this wouldn’t be the most logical place for him.

The second thing is something I have heard other people say and, again, people do not mean any harm when saying it, but if you are working with any kids who are special education, special needs, or in any way in a “sub-population” please, please, PLEASE try to refrain from calling the rest of the kids in a school the “regular” kids. To be told that of course it “would be a priority to get your son in with the regular kids” was probably a slip of the tongue, but, especially if you are working with kids on Ed Plans/I.EP.s, professionals should take care to not make the parents feel like their kids are not “regular”. Being in so many IEP and parent meetings myself, I know that wording can make a huge difference in how parents perceive their kids are being handled by the adults in the room. I am probably being over-sensitive, but I needed to share that and hopefully if it happens to others, you’ll be more prepared – I wasn’t and it weighed heavily on my mind and brought up many thoughts of how many times Finn might be considered different or not “regular” because of his deafness.

One quick note about last blog- I made a technical error when talking about mapping. I mentioned that our SLP would be doing the mapping and thanks to my SLP and Audiology friends, I know I have to fix that. Looking back at my meeting notes, the SLP said she would be present for Finn’s mapping, but it is the audiologist who does the actual mapping. Thank you to those of you who let me know about my error. It is really important to me that this blog be a place where people can get helpful, clear, and factual information and I welcome anyone who can help me dot my T’s and cross my I’s (Sarah, that last sentence was for you ;).

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