raising children with disabilities

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.

Super Awesome Wednesday Updates

I have absolutely nothing to say. Well okay, I always have something to say. Let’s change that to – I have absolutely no desire to write. Wait, also not true. Hmmm . . . how about – I’m lazy. Yep, that one works.

Things have been really quiet lately. Which is nice. Any free time I’ve managed to hoard is spent curled up on the couch reading a book. Which is also nice. Last night, for example, the little man and I read an article about privacy and medical issues in records from early twentieth century juvenile reform institutions while the rest of the family was at cheer practice. I enjoyed it, but he found it conspicuously lacking pictures. Aside from nerdy archival stuff, I’m reading Bark by Lorrie Moore (fiction, short stories, 2014)* and Speak Now: Marriage Equality on Trial by Kenji Yoshino (nonfiction, 2015). My goal this year is to up my fiction intake by alternating fiction and nonfiction selections (or, more likely, reading one of each at the same time).

My nonfiction to-read list is constantly growing. Currently, in no particular order –
Partly Cloudy Patriot by Sarah Vowell (2002, used an audible credit to get the audiobook)
The Physiology of Taste: Or Meditations on Transcendental Gastronomy by Jean Anthelme Brillat-Savarin (1825, on my bookshelf)
1919, The Year of Racial Violence: How African Americans Fought Back by David F. Krugler (2015, on my bookshelf)
Ghettoside: A True Story of Murder in America by Jill Leovy (2015, on my bookshelf)
Grunt: The Curious Science of Humans at War by Mary Roach (forthcoming June 2016, preordered)
Tomorrow Is Now by Eleanor Roosevelt (1963, on my bookshelf)

And those are just the ones that float to the top of the pack. If you open up my library ebook to-read section, that list would instantly triple in size. On the other hand, my fiction list is small and I’m fishing for suggestions. Currently, in no particular order –
Shantaram by Gregory David Roberts (2014)
Anna Karenina by Leo Tolstoy (1877, slowly working my way through the audiobook)
Gillespie and I by Jane Harris (2011, a gift from the LibraryThing’s SantaThing)

Leaving books behind for the moment, sort of. I have a couple of new projects in the works. One is an article I’ve been trying to write for a while about a local women’s group. It is time to sit down and finish it, so I imposed a February 28 first draft deadline on myself. I’m not a big drafter (I edit as I go), so it should just need cleaning up at that point. The other I’m not going to talk about because it is just an abstract concept for the moment. I’m pretty excited though.

This is our last week of cheering at basketball games. I am beyond excited. It’s not that I’m not glad my kid is in an activity she enjoys (and she does really, really love it), it’s just that this kind of schedule doesn’t really fit with our family dynamics. In other words, it is a bitch to keep this kind of schedule, keep up with the little man, and keep your sanity. A big factor in this is the lack of school buses to transport the kids to the games . . . . meaning every single away game requires a parental figure (the husband). One parent (me) has to stay home with the little man and hold down the fort. Let’s just say I’m not sad about getting a break for a bit.

I went to the first weekend of a large estate sale last Sunday and managed to avoid buying a wonderful set of dishes and at least a dozen different drawing and paintings. However, I did not manage to avoid walking away with a sculpture of a nude bather that now lives on my dining room table. Because where else would you put a sculpture of nude bather? And now I can’t go to the other weekends of the estate sale because I spent enough money. I couldn’t help it though; I love it. L-O-V-E, love it.

Last week the little man said, “Yeah, I’m going bye-bye.” Clear as a bell, would have been understood by anyone in the room. That is officially his longest sentence (beating out, “Here you go.”). It is absolutely encouraging when he has these little successes. My biggest dream for him is to gain the ability to successfully communicate verbally. Some days it is hard to keep working at it and working at it, but then something like this happens and it just lights up the room. It probably is time for another blog posts about the ups and downs of special needs parenting. The illness of his first few years is gone, so our parenting dynamic (I’m not even sure what I mean by that, you just make something up) has shifted.

*Confession: This book was a gift and I’ve already read half of it, but until typing this out just now I thought it was called “Lorrie Moore Bark.” The words are all evenly spaced on the cover and all looked the same color in the dim evening light at home. I literally thought the dog pictured on the cover was name Lorrie Moore.

Randomness, Bullet Points, and Very Important Information

  • Look! It is another post filled with random information and gifs! I’m so original.

  • Over the weekend my husband took our sectional apart then put it back together reversed and rotated. Or something. It is kind of difficult to explain, but the end result is a similarly shaped sectional facing a different direction. Yay for modular furniture! He took on this task to make room for the little man’s recliner. Somehow, even though we added an additional piece of furniture, the room feels larger. It is also about 200% cozier. I am confused by this furniture illusion.

  • It is cool outside and I’m loving it. [Did you say that to the McDonald’s tune? That’s how I typed it.] We’ve also had several drizzly, nasty, overcast, rainy days in a row. I’m loving that too.
    Addams Family Rain

  • On Sunday, I reheated some chicken in the oven. It took a total of twelve minutes. I burned myself.

  • The daughter got braces last Thursday. Her two front teeth already look different. The orthodontist said those particular teeth would move fast, but I didn’t think he meant in a matter of days. Speaking of braces, I’m really ticked off about the price. Unless you are correcting something major, insurance covers next to nothing. But we live in a society where straight teeth are expected. Braces are no longer a luxury product, but they are still priced like one. Just consider the huge number of adults getting braces and products like Invisalign today – we’ve lived through a big teeth change, people! Oh well, nothing to do but make my monthly payments and complain.

  • I am counting down the days until I can put up Christmas decorations. I may have already listened to holiday music . . . multiple times.

  • I tried to make a funny blog post about things I irrationally hate and things I love (in theory). Unfortunately, I am a cranky bitch so my hate list kept growing while the love list was stuck at two. Want some examples from the irrationally hate list? Red colored mulch, long instrumental breaks in songs, people who name their cars, pink colored weapons, iPhones. At one point ranch dressing was on the list, but I decided that one was completely rational and scratched it off.

  • I may have recently said “because I’m adorable” in a serious professional conversation. I’m not sure whether to be embarrassed by this gaffe, amused at my humor, or amazed by my audacity. I’ve decided just to try and ignore it unless it comes back to haunt me.

  • Sometimes I have to say “I need you to stop talking” just to get a word in edgewise with my daughter. She is too extroverted for me.

  • People keep asking me if we’ve figured out what we are going to do with the little man this summer. The short answer is. . . No. The long answer is. . . No and we don’t really have any good options. There just isn’t care out there for someone as disabled as the little man. At least, not that I’ve found yet. So far, I have two options on my list: 1) Hire a nanny (can’t afford that) or 2) One of us quit our job (can’t afford that either). It is kind of terrifying.

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.


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.

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.

Monday was a Real Bitch.

We spent six hours in our local children’s hospital on Monday for regular check-up appointments. We got less-than-stellar news at the last appointment. Then we got really horrible extended-family news on the way home, although I won’t be sharing that today.

8:15am: Parking is spectacular, as none of the other handicapped vehicles have early appointments . . . apparently.

8:30am: First appointment time with the rehabilitation doc. Sitting in the waiting room – this neuroscience center is our most-visited location of the hospital. We got this.

8:40am: Called back to do all of the weighing and checking with the nurse. This was our first time taking the little man to an appointment in his wheelchair (instead of the stroller), so she weighed it for us to. Once they know how much the empty wheelchair weighs, we can just push him up onto the big scale and do a little subtraction for the final number.

8:45am: In the room. We are clearly the first appointment of the day and I think that means we will be in and out quickly [ha! I’m naïve]. We start planning a visit to a local brunch spot in-between appointments.

8:45am8:55am: The clock is broken.

9:10am: First up, the resident. She is nice and seems to be further along than some people we usually end up with – most of her questions make sense and she isn’t thrown off if we don’t know the answer to something.

9:20-9:45am: Wait. Wait. Wait. Wait.

9:45am: The doctor! The appointment is pretty short, but we expected that. He is pretty much up-to-date on all of his equipment and doesn’t need any therapy changes, so we just get a prescription for new leg braces and discuss raising the dose of his muscle relaxer (that ends up tabled for the moment, as we meet with our neurologist in a couple of weeks).

10:10-10:45am: Ugh, it is later than expected and really hot outside. We decide to brunch in the hospital cafeteria. Eat. Eat. Sit. Eat.

11:00am: We head downstairs to get the little man fitted for his new braces. Last time we made the mistake of having them done through this school. We loved the style of the braces and shoes a whole lot better and it was definitely easier than visiting the hospital, but the braces fell apart too quickly. We won’t make that mistake twice! If you have never been cast for braces, it is a very simple process and only takes about fifteen minutes.

The little man's first AFOs, 2011.
The little man’s first AFOs, 2011.

11:45am: After wandering around for a while, we go ahead and check in at our next appointment with the orthopedic department. The appointment is scheduled for 12:30, but he will need x-rays first, so it doesn’t hurt to arrive early. The hospital is in the middle of a remodel and this is our first time in the new orthopedic waiting room – very nice!

I lost track of the time spent in this waiting room. At some point, we had three x-rays taken. That went well, mainly because the little man doesn’t have to be put in the horrible baby-tube anymore.

A baby in a Pigg-O-Stat - amazingly not screaming like very other child I've seen in one. This baby became a meme, so I don't know where the original came from.
A baby in a Pigg-O-Stat – amazingly not screaming like every other child I’ve seen in one.
This baby became a meme, so I don’t know where it originally came from.

12:45pm: We are called back, finally!. . . . But wait! It is just to see the nurse and sit in a sub-waiting room. BLARGH! I can’t complain too much though, at this point we are only fifteen minutes past appointment time.

1:00pm: Okay, finally in the actual room. Let’s get this show moving.

1:15pm: ::sigh::

1:20pm: The nurse pops in again to do the initial questions. Yay! She says they will be back in a few minutes. She is lying.

1:50pm: I’m losing the will to live.

2:00pm: Doctor! The little man is tired and really isn’t handling being stretched all over the place very well. Unfortunately, the x-ray shows that his left hip has gotten worse despite our work with Botox in the groin and targeted therapy. We will watch it for a few more months, but if it continues down this path (very likely) we will need to discuss surgery to cut and re-position the bone.

2:15pm: After six hours, we leave deflated.

3:00pm: Distressing family news. We all take a nap.

I’d like end on a high note with a funny graphic about having a “case of the Mondays” here, but it is inappropriate. Perhaps I can update with better news before this posts.

It’s not a minivan; it’s a Honda.*

Well, we finally bought the minivan. You probably know by now that I am not thrilled with this new development. Yes, I know lots of people love their vans. Yes, I know it is going to make things easier. Yes, I know I’m being a pretentious little snot looking down my nose at all you van drivers. I’ve just . . . never wanted a van. Or even a suv. I am completely a car person. I’ll get over it though.

We ended up with a Honda Odyssey EX-L. Technically the EX-L is smackdab in the middle of what they offer, breaking with our family motto – “One step up from the bottom.” It can seat eight, so we told the daughter we were going to have to adopt more kids to fill the seats. [Joke!]

Here are some things I really like about the new van:

  • It has a ton of cup holders. No more “do you have somewhere up there to put this” coming from the back seat.
  • It has automatic sliding doors. No more getting soaked trying to load an immobile five-year old into the vehicle.
  • It has leather interior. Easy to wipe down spills, yes!
  • It doesn’t feel like a boat when you are driving it. I was actually really surprised by this. They kind of feel like boats when you ride in them and I expected the same while driving.
  • It has seat warmers for the front seats. I like a toasty tush.
  • It has enough space to fit the little man’s wheelchair into the back without folding any seats down. For now, at least.

And here it is in all of its glory:
Okay, let’s talk about the wheelchair. We decided against getting any ramp, roll-in capability, or lift for now. It is easy for you guys on the outside to see our situation and realize that it would make things easier if we had a ramp or lift. But – to be honest – this is one little bit of normalcy we don’t want to give up yet and if that means lifting the kid into his car seat and lugging the wheelchair into the back. His car seat has a five-point harness with a weight capacity of 70 pounds (shout out to the Britax Pioneer 70) and provides the support he needs while sitting. I know when we make the change I’ll probably write a post about titled “Why Didn’t I Do This Years Ago?” and I’m okay with that. For now, the chair stays in the back.

*This wisdom brought to you by Mr. Tacky.

The One Where I Call Bullshit

You know, if you read a lot of blogs written by parents with special needs children you start to see posts that say things like “No, I don’t wish my child was ‘normal,’ because then he wouldn’t be the same” or “If I had the power, I still wouldn’t change things. I love my kid how she is.”

office space

I call bullshit. Not on the fact that these parents don’t love their children no matter what, but on the fact that they wouldn’t change things if they had the power. I love the little man. I love his sweet nature and his contagious smile. But I would give anything to take this disability away and give him the chance to live an easier life. Even if it means he turns out to be an asshole.

It is all just silliness, of course. None of us have the power to change these kinds of things. But still. Those kinds of statements just rub me the wrong way. Sort of a, “See! I love my child so much! So much that I would keep everything this way! Our family is so accepting and loving! I can’t believe you want to change your kid.” Now, I know the parents saying these things don’t think that way. They are all – in general – lovely people and I get the sentiment they are going for. But I think it sets a bad precedent. I think it would do more good for special needs parents everywhere to admit that we would love for our children to be able to live a “normal” life and, in turn, create an atmosphere where we can all admit our secret wishes.

A good healthy dose of honesty. I am a real parent, not someone who had achieved a higher state of being through my personal challenges. I dislike sickness and whining just as much as you do. I’d love to get a few minutes alone too. I can’t always balance on the pedestal some people want to put me on. [I’m not trying to brag here, just pointing out a common reaction to “my kind” of parent that I’ve experienced.] But I’m still a pretty good parent. So are you, probably.

You aren’t a bad parent if you wish your child had it easier. You aren’t a bad parent if you are tired of changing diapers way past diaper-changing age (we are on year five now and it sucks – I think I’ve said this before.). You aren’t a bad parent if you wish that you could, just once, leave the house without having to plan your day around handicapped access.

It is okay to admit that you hate a lot of things you have to do every day. It is okay to admit that things would be easier – for your kid and for you – if things were different.

Wishing that things could be different doesn’t mean you love your child any less. It just means that you know what challenges they face and wish you could help more. Isn’t that what we want to do for all our children?