Tag

the little man

Hips Don’t Lie

But they do fail. The little man’s hips have been an issue for a few years now and things are quickly coming to a head.

Hip problems are fairly common for children with cerebral palsy – in the little man’s case, a mix of spastic muscles pulling on the joint and his inability to do much weight-bearing on his legs has landed him in a deteriorating situation. We are dealing with developmental hip dysplasia. Basically, one of his joints has not formed properly. The other is okay, but not great.

I’ve learned so much about hip development over the last couple of years, but I’m not a doctor and have no clue how to explain this without demonstrating with my hands. So I googled a diagram. Its like school!


The little man isn’t at the point where he is having any pain and hasn’t lost any of his already limited motion. One leg is noticeably longer than the other, it is becoming increasingly difficult to change his diapers, and his bottom half is slightly rotated. We’ve been watching it and trying other options, but the thing I have been dreading most is pretty much our only remaining option.

::sigh:: Surgery. ::sigh::

His hip hasn’t dislocated. . . yet. But without surgery he is heading for more discomfort, complications, and pain. It would also mean giving up on a future where he can stand or walk. And no, we aren’t ready to give up on that. Even just being able to stand and assist with transfers would mean a completely different life – one where he can use the restroom in privacy and ride in a regular car seat.

We are tentatively on the schedule for a hip osteotomy in January where the little man’s surgeon will go in a carve out a better socket for his femur to fit in snugly. It isn’t pleasant. On top of the awfulness of putting a child through this kind of pain when you aren’t able adequately explain what is happening to him, he will come home in a body cast for two months. It makes me sick to my stomach just to think about it and has since we first learned about the possibility from our surgeon in Arkansas.

We’ve always had great doctors and a great team. I trust them. I know we are making the right decision, but that doesn’t make it any easier. Surgery won’t be final until we have a massive team meeting in September. I guess if you don’t have a loved one with a major disability or other illness, you might not quite understand what I mean by “team”. It isn’t an exaggeration. No less than 12 people will be involved this meeting, including the husband and I. No decisions are made alone. Thankfully.

First Grade!

Wheel Chair - iStock_000011476045LargeMy little man started first grade a couple of weeks ago. Now, if you have been reading this blog for any real length of time, you know that the little man is severely disabled, mostly nonverbal, and largely wheelchair bound. This makes school a very different experience for him than a typical kid. For starters, his classroom time is split between traditional lessons and life skills. His kindergarten curriculum included things like going to the grocery store and buying Christmas gifts for his family.

Classrooms like this are called different things – in our last district it was Community Based Instruction (CBI for short), here it is Special Day Classes – but either way it means 100%-ish in a special education environment. [I say “ish” because placement in these classes doesn’t prevent a kid from joining the mainstream classes occasionally.] This may be somewhat different than what you remember from being in school where there was sort of one special ed class and anyone with “an issue” went to the same place. Now schools do better with dividing kids up based on their level of disability – maybe they need to be in the full class like the little man, or maybe they only need to spend part of a day with a special class, or maybe they only need extra help from an aid throughout the day, etc.

Transferring the little man’s services has been nerve-wracking. It is a lot to do in a very short window of time. Difficult in the best of times, for sure. And still a work in progress! The school district office was closed and I wasn’t able to register the kids until mid-July, only a month before classes started. I was pre-stressed about the amount of appointments and evaluations we were going to have to go through in just a couple of weeks to get a placement for him. And about the vacation time I didn’t have to do that. And then. . it didn’t happen. The district did this amazing thing where they based his placement on his most recent IEP (completed in May in Arkansas). This may all seem very obvious to you, but I had no clue it was even an option.

The placement he started school with is a thirty-day temporary placement. We will come together soon to discuss how it is going – this gives the teachers/aids/therapists time to learn all of those things about the little man you can’t get from a handful of papers. Love this! True, I’d hate for his initial placement to fail, but it would be far worse to be locked in to something long term based on information received before they even met the kid. Or even worse, missing important school time after going an entire summer without his important therapies.

Okay, let’s talk about that placement. It looks like the school district here is going to be just a lovely and helpful as the last one (that isn’t sarcasm, they were great), but that still doesn’t mean it has been all puppies and roses. Let me replay a portion of the conversation I had with the school:

School District: We have him a place at [redacted] Elementary with [teacher]. That is a special day class that has 2nd to 8th graders.

Me: I’m sorry. Did you say 2nd to 8th?

School District: Yes. I know that is quite a range.

Me: ::thinking:: What the hell!?

To learn that my first grader was going to be the youngest kid in a classroom with middle school kids (disabled or not!) was a bit shocking. For some perspective, his class in Arkansas was K-2. They had another classroom for 3-5. Turns out the district puts kids who need medical attention – like the little man’s g-tube – in this classroom. I don’t know why there are middle school kids on-site at an elementary, medical issues or not.

I remained calm and we are giving it a try. I’ve always taken the little man’s medical providers at face value when they suggest something and know they wouldn’t do anything to intentionally put him at risk. Due to my work schedule, I haven’t even seen the classroom or met the teacher yet, but the husband had a good first impression. And the little man seems to be enjoying himself.

One week in and his teacher told my husband that she really wants to keep him in her class. And that she will work to make sure he has everything he needs geared to his age group. I’m not surprised by this reaction. The little man is sneaky and can get people tied around his little finger in a matter of minutes. Just ask his Arkansas teacher and therapists. Or his grandparents.

Anyway, I’m looking forward to having that first meeting with “the team” and getting some first-hand opinions about how he is doing in the classroom and handling the move. And he has his first appointment with his new pediatrician at the Stanford children’s hospital today. Getting that side of the services going will make me feel more at ease, I’m sure.

To sum it all up: I’m nervous. The little man is smiley, as usual.

What We’ve Got Here is a Failure to Communicate

The little man had his first meeting about the possibility of an assisted speech device last week. This is very exciting as using one of these would dramatically increase his vocabulary and allow him to express some of those more complicated thoughts he has. The little man is extremely sociable and will just babble your head off; I’m excited to see what he is able to say once he learns to work with a device.

And now for the time where I say what a lot of special needs parents think, but keep to themselves – It is also sad. Because another device feels a bit like another defeat. In a world where you fight every day for your kid to live as normally as possible, adding another device to his medical entourage is frustrating. A part of me fears that he will move backwards with this device and lose some speech he already has. Like when he completely stopped eating anything by mouth after he got his button.

I’m a rational person though. I know that the truth of the matter is closer to that first paragraph than the second. And – most importantly – I trust his therapists to guide us in the right direction. They are lovely and want the little man to succeed as much as we do.

Okay, now back to the meeting.

The little man already uses an ipad in his classroom, but, because of his inability to isolate exactly where he wants his finger to go, it works best when you display only a couple of choices. This makes it a great learning device – he can identify colors, letters, etc. – but not a communication device in any way.

Even though everyone assumed he would respond best to a direct touch device (the kind where he would touch a picture on a screen to make it say a certain word), we tried a couple of other options. Just because, why not? First up was a device with great big switches/buttons.

This option clearly wasn’t for the little man. All he wanted to do was reach for/touch the screen; screw those buttons. I could tell that he was just humoring the company rep and his therapists with this one. There is definitely an option of using the large buttons to help the little man play with some of his toys as he grows, but his communication level and movement ability allows him to do more for an everyday device.

Next up was a device that followed your eye movement. Everybody knew this wasn’t going to work for him, but we gave it a go anyway since it was there. Personally, I was fascinated. This device followed your eyes allowing you to concentrate on an image to make it speak. Absolutely amazing. Again, this wasn’t for the little man – he is a very mobile little guy and could never sit still enough to get this machine calibrated. I wanted to play with it though. . .

The end result of the meeting is that we intend to go with a direct touch device, but we don’t yet have enough information to make a final decision. The best way to describe the device is as an extra-thick tablet with plastic guard over the top to guide his fingers into the right holes. Here is the kind of thing I’m talking about:

Image from AAC Resources Network (http://aacresourcesnetwork.com/)
Image from AAC Resources Network (http://aacresourcesnetwork.com/)

Unfortunately, the little man wasn’t having much success with the largest key guard the rep had. The reasons were twofold: 1) the tone in his arm made it difficult for him to narrow down the area he needed to put his finger and 2) the device was set-up to be focusing on the word “go.” As in, “let’s make that toy go.” Well, the little man can say go. So he was haphazardly banging on the device when they told him to push go and just saying the word. I think he probably would have been rolling his eyes if he had that ability. We’ll be able to tell more about how he relates to the device when it is a little more individualized.

On top of that he was just overwhelmingly distracted by the people, the toys, the office, the window, showing off, etc. I look forward to seeing how he responds when we get to try a larger key guard and he is able to work one-on-one with his speech therapist during their regular session. You know, at a time when he is used to putting in the work and doing what she says.

So overall, it was a great first meeting, but we have more to think about and discuss. He should have a whole new world of speech in his little hands soon though.

The First Nine Weeks

Okay, let’s talk about Kindergarten.

The little man has officially been a kindergartner for nine weeks now and – overall – it is going well. He has no problem waking up a little bit earlier to catch the bus. In fact, he really likes the bus driver and is usually excited when it pulls up outside the house. If I’m not in the living room when it arrives, he gives a little yell (usually “hey”) to let me know it is time to go. Then as they raise him up in the wheelchair lift he waves goodbye, just smiling and happy. We like the bus driver too; he has been driving the special needs bus for several years and is great with the kids.

Of course there have been some days he hasn’t been thrilled to head off to school, but the little man is pretty agreeable and typically gets over it pretty fast. Although occasionally he will tell me “no” when I try to put his uniform on. Sometimes that is a game – he wants me to be taken aback by his audacity – other times he means it.

He still isn’t completely sure of the routine. Every day when I carry him down the hallway to the living room he asks where his dad is. I’m assuming he just isn’t sure if it is a school day and dad has already left for work or if it is the weekend and dad is relaxing on the couch. It doesn’t bother him when I tell him dad is at work, so it’s all good.

I’m pleased with his teacher. She is absolutely still trying to figure our little man out, but is committed to finding out what works best for him. This is really all you can ask for. I mean, there is a huge learning curve with a disabled child and every single one of the kids in that class is different. I love the fact that she is supportive of our desire to get him spending some time with the typical kids. The little man has always learned better from other children and I wanted to make sure he was able to spend some time outside of the special needs class. His teacher was happy to give it a try and it worked out so well we are adjusting the IEP to add more time with regular kindergarten classes. This is during things like art and music, not standard teaching time.

He got a good report at the first parent-teacher conference. I was very happy that one of the first things his teacher said to me in that meeting was that she understood what I meant when I was explaining to her that there is a lot more going on in this head than he can communicate. The little man is profoundly disabled, but had a lot of potential mentally if we can just figure out how to get it out. I try to let everyone we work with know this, but it can be hard to get the point across – hard to make it seem like I’m not just an overly-optimistic, partially-deluded parent.

He is struggling with being comfortable around the kids, although I’m sure this will only approve. The little man is used to be the “most-disabled” in his classrooms. Being around other children in wheelchairs and children awkwardly (and adorably) traipsing around in their braces must be a bit of a shock. We are working on getting him a new chair in the classroom as he doesn’t like being in the current option that much. If he feels a little more secure when he is out of his wheelchair, I think he will feel more comfortable with the other kids. It isn’t a social problem, that’s for sure; the little man is a social butterfly.

I don’t feel like his therapy is up to the level it was at his preschool, but these are brand new (to him) therapists still learning about his skill level and possibilities. I’m not worried about this working itself out as they get into a groove with him.

From my point of view, I’ve been surprised by how much of a shock kindergarten has been for me. There is no ignoring the fact that my son is on a different educational track than the other kids in the school. He recently had a field trip where a small group from his class went to a local community market to learn about fruits and vegetables. I was conflicted – on one hand, I know the little man loved it and I’m glad he is getting to go out and about; on the other hand, I’m sad that my son’s education is going to be so based in learning navigate his world in a very rudimentary way. I’ve also discovered a new found fear of other kids (and adults, let’s be real here) making fun of him and his classmates when they are on field trips. These are my fears though, not his.

Kindergarten!

It is official! The little man is a kindergartenian. Kindergartenist? Ah, kindergartner! Third time’s a charm.

In case you don’t remember, here are the big issues we were facing with the start of kindergarten:

1) Having someone home to meet the little man’s bus in the afternoon. We weren’t able to find any kind of special needs after school care.

2) Pick the daughter up from school. She goes to a public charter school that does not offer bus service.

So, how are two working parents handling this? We are both getting up at 5am. Then the husband leaves to arrive at work by 6am, I get the little man ready to get on the bus at 6:45-7:00 and I have a little bit of extra time to finish getting ready before taking the daughter to school and arriving at work around 8am. The husband then gets off at 2:30pm, makes it home to meet the bus, and then immediately loads the little man up in the van to go pick up the daughter.

Is this sustainable in the long run? I’m not sure. We are working on trial and error right now. Last year we tried an arrangement to get the daughter home that pushed me too far so we had to brainstorm and adjust. We will be prepared to deal with these new challenges as they arise.
School

First impression? The little man is adjusting to kindergarten very well. His teacher created a little book to go on the back of his wheelchair that details some of his common words/sounds, some of the things he likes to do, and extra information about him. It has plenty of empty space to be added to as he goes along and they encourage us to add to it also. At the open house, the two main aids in his classroom immediately started talking to him and asking him questions instead of me, even though he wasn’t able to answer. Love that. Just that one little thing shows me they understand what it is like and have experience working with special needs, especially largely nonverbal kids.

He got to play with shaving cream and dried beans on the very first day. The little man is a big fan of playing with that kind of stuff, so I know he had a blast. Great way to start.

He started riding the bus on day three. That was incredibly nerve-wracking for me as I was out of town, but he took it in stride. The bus driver has been driving this same special needs route for years, so I feel like he is in good hands. He cried a bit getting on the bus for the second time, but the hubby seemed to think it was more about the change in routine. Since then, he was been his regular happy self, waving as he leaves in the morning. An interesting bit: If the little man is going to miss school, I have to text the bus driver and let him know. This isn’t a standard stop – if we don’t need him, he won’t come by our neighborhood at all. He checks his phone at every stop looking for updates. Just one of those little unusual things that comes up when dealing with special needs kids.

I was a little disappointed because he didn’t get his therapy the first week. I completely understand that they have a lot of schedules to learn and work out, but by the start of the next week I could really tell he hadn’t been stretched out. I didn’t even think about going through some exercises ourselves. Bad parents.

And It Begins!

Wheel Chair - iStock_000011476045LargeThe little man’s kindergarten journey, I mean. And guess what?! You, dear readers, are going to get to accompany us as we navigate this new territory.

We had our first meeting with the district’s special education coordinator last week. It was mainly just to meet at the little man’s current school, make sure all of the referrals were ready to go, and ask any questions we might have about the process.

And to fill out forms, of course. Probably some we have already filled out before. Many that are incredibly difficult to complete. You know the ones – where they give you two lines to describe your child’s medical conditions (ha! I’m going to need a second page) and give you tiny blanks to explain what your child can’t do or has trouble with. Um. . let me tell you what he CAN do and you just assume he struggles with the rest.

Seriously. The little man qualifies as profoundly disabled; those forms aren’t written for us.

That being said, the special ed coordinator seemed friendly and – more than anything – I’m thrilled to be getting this process started. The next meeting will involve some actual discussion about eligibility, placements, and needs.

I’ll keep you updated!

A Little R&R

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“Don’t underestimate the value of Doing Nothing, of just going along,
listening to all the things you can’t hear, and not bothering.”
Pooh’s Little Instruction Book

At first glance, this photo may not look very special to you – just a little boy sleeping in a recliner. In reality it is a whole lot more.

This is the little man. Relaxing. As tension-free as he can get. He looks comfortable and natural, not tight from spastic muscles. The crossing of his legs might appear very nonchalant, but it would have taken him multiple tries to get into that position. It is purposeful.

The normalcy of this particular photograph was so striking it was immediately sent to the grandparents. We just had to share this triumph. Before the little man, I would never have considered just being comfortable a triumph. Now I understand how much those things mean when life isn’t “normal.”

My husband decided to move this recliner into our living room to increase his gaming relaxation during my second ill-fated trip to Texas. His intention was for the little man to sit beside him in his special chair, but the little man just wasn’t having any of that. He insisted on sitting in the recliner. I can’t blame him – the recliner is “his” and usually lives in his room.

Now he won’t sit anywhere else.

Our solution? Well, we are taking the chaise off of our sectional to make a permanent spot for the recliner in the living room. I’d fill the entire room with recliners if it would mean more relaxed moments like the one captured in this image. [No. This does not mean we can turn the living room into a theater, husband.]

We Are So Wimbledon

I’ve been neglecting the blog a little bit lately. This post . . . isn’t really going to make up for that.

Sunday – wracked by allergies after eating dinner practically outside, I spend most of the day on the couch. The husband, also wracked by allergies, does the same. When I am asleep, he is awake. When he is asleep, I am awake. This goes on for most of the day.

The only way I’ll be able to enjoy the outdoors in the future.

Remarkably, the little man decided to cooperate; he happily watches television and plays with his toys. Aside: When the little man was three, he had a less-than-stellar teacher for about a month. Three days in a row, she sent his sheet home with a note saying his was “uncooperative.” Perhaps she had never worked with toddlers, disabled or otherwise, but my head nearly exploded.

Monday – we roll out of bed to get the daughter to school then head to the local Children’s Hospital for the little man’s appointment with his neurologist, including an EEG and Botox shots.

It didn’t look anything like this.

Everything went fine. The little man’s brain waves are “remarkably good” (woo! way to go brain!) and shots sucks. I almost fell asleep in the room, but fought past my allergies and made it home. With a bonus cup of hot chocolate from the café in the lobby. I fell asleep on the couch for a couple of hours, and then slept off and on for the rest of the evening. The husband was feeling tolerable, but I was majorly dragging.

Tuesday – I woke up feeling moderately better – maybe 50% better – and headed to work. I started my day with great news in my email inbox (can’t share yet, but you wouldn’t find it interesting anyway). After several hours of business, I rushed to meet with our mortgage broker. We are refinancing our home and I had all sort of paperwork to sign. Toss in a little extra talk about good books to read and it was a pretty nice mortgage meeting. In general, mortgage meetings are pretty pleasant when people aren’t questioning whether or not you can afford the loan and you save money in the end.

Looking good, piggy bank.

Back to work for a few more hours before picking up the girl at dance. Except she called in sick to dance and I got to go straight home for a short talk with the little man (I’m assuming he told me all about his day and what an awesome mom I am) and a quick ten-minute dinner.

Stressed from a non-stop schedule, I listened to Wimbledon by the Rich White Ladies to brighten my day. Works every time, although my significant other hates it.

The husband went straight into a conference call about cheerleading while I prepared for a phone interview for some freelance writing I’m doing. Finally, at 8:30 I sat down on the couch, enjoyed a glass of wine, and typed this up for you, dear readers. Still fighting off allergies.

And She Speaks!

Audio PostHi all!

I decided to talk again. I’m really thinking I might start doing this once a month instead of my regular update posts. I enjoyed it last time.

If you catch it, you’ll hear the little man’s name. I let is slip. Woops! Considering I posted his Go Fund Me here though, I didn’t feel like I need to go back to cut it.

Drinking game suggestion: take a shot every time I say “let’s see.” It isn’t that bad though; I had a television interview about a book I wrote and managed to say “absolutely” over and over, even restoring to “oh, absolutely, absolutely” at one point.

And She Speaks!

Audio PostHi all!

Just a short little impromptu audio post today. I recorded this last night just before bed.

Enjoy my babbling and southern accent. Fun fact – the way I say “bye” at this is how I say it when I’m talking on the phone. Not usually in person though.

P.S. That clicking in the background towards the end is my paper-eating dog dancing around the bedroom door trying to get out. She didn’t realize it was already open.