Tag Archives: special needs parenting

Forcing Friendships

26 Aug

Sorry for not updating in a while – I spent all my writing energy in those last two posts and quickly ran out of good stories to tell. I’m trying to think of more memorable moments to share, but I can’t promise that they’ll be nearly as entertaining as those two. 

In the meantime….

Today was Daniel’s first day at a new school. We transferred him mainly to have him closer to home in the hopes that he would make more friends in the neighborhood. It went well enough this morning – we actually left the house on time – and the drop off was drama free. For the rest of the day, I was on pins and needles at work, anxiously waiting for the phone call as to how it went. So when I saw my mom’s cell calling, I jumped on it like a duck on a bug.

Unfortunately, it was hard to hear what was going on over the crying.

It’s got to be the worst feeling as a parent – when there’s nothing you can do for your kid to make it better.

Granted, Daniel tends to focus on the negative, and so his report should be taken with a grain of salt. But he said none of the kids would talk to him, that they acted like he wasn’t there, and, even more upsetting, the teacher expects them to read and write cursive.

The cursive thing I can work on at home. The kids? I can’t fix that for him.

And it’s not that I haven’t tried. When we finally decided on transferring, I reached out to the local moms groups on facebook and asked if anyone would be willing to meet up. Some very nice and friendly moms responded, and one organized a meetup at a local park for fellow fourth graders.

But I can only do so much. When we got to the park, Daniel did not interact much with the other kids at all, saying he preferred to play by himself. Nerves? Shyness? Anxiety? By the end of the playdate, he was playing with some of the other kids, but I was anxious the whole time. Why doesn’t he approach the other kids? Why doesn’t he fit in?

I wish I could direct the movie of his life. I’d write a thoughtful, heartwarming, uplifting script. I’d cast kind hearted people as both supporting players and lead roles. I’d make sure it had a happy ending. But I have to accept the fact that, at best, I’m a character in his drama, not the director.

The reality is, you can’t make friends for your kid, any more than you can force people to be friends with you. It has to happen naturally, and it takes time. You can’t force connections, you can only put yourself out there and hope for the best. But what do you do if your kid doesn’t even want to put themselves out there? And what do you do when you’re worried that your kid will never fit in, thanks to his ‘issues’?

I didn’t mean for this to be so negative or depressing. I was hoping that I would have a “Daniel transferred and everything is going to be perfect!” update. But life just doesn’t work that way. I have to sit back and let the movie happen.

  
He’s a pretty handsome leading man, if I do say so myself. 

In other news….

We celebrated the last days of freedom by going to the beach. I insisted on slathering sunblock all over Daniel. He squirmed and fidgeted and yowled like an angry cat. Exhausted, I put the sunblock aside and watched him frolic in the waves.

Guess who’s now sunburned all over the right side of her body – and not at all on her left. 

   

S

  

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Special Needs Parenting Part Two: Pica

3 Feb

As I prepare to write this post, I’m reminded why I gave my blog this title in the first place. The GPS in my Subaru was constantly giving me wrong directions, bad advice, and I think possibly trying to kill me. It would tell me to go the wrong way down one way streets, it would tell me I hadn’t reached my destination yet and to keep driving while I was parked in the parking lot and ‘keep driving’ would have meant ‘destroy Fred’s apartment’, and it would often tell me I was driving in the Chicago River. The best was one time, as I drove on Lower Wacker Drive, the GPS got so confused it shuddered a few times, then showed my car slowly but surely driving into Lake Michigan. So I joked with my friends that, one day, my biography would be called “Even the GPS was lost.”

But the title works because it’s not that only the GPS was lost, it’s that even the GPS was lost – a crucial distinction. I am totally and utterly lost as well. Life has thrown me so many curveballs, fastballs, and even screwballs (or are those not a real thing?), that I am left standing dazed at home plate.

Daniel has special needs. This is not news. This is the kid that, at age 3, had such an epic meltdown in a restaurant that another patron approached and kindly asked if he was autistic. She was a lot less understanding when we told her “No, he’s just… hangry.” (Probably because that word hadn’t been invented yet.) This is the kid so sensitive to light and sound that a fire drill at school will render him completely inconsolable for a long stretch of time. This is the kid who still grips his pencil with his whole fist. This is the kid that says ‘wibs’ for ‘ribs’, ‘da’ for ‘the’, and ‘offer’ for ‘other’.

And this is the kid who has been eating things that aren’t food since he was a baby. I couldn’t figure out why large chunks of chenille were disappearing from his blanket when he was about 1 year old, and kept thinking the blanket was just getting wrecked in the washing machine – until I caught him eating it. He gnaws on his sleeves, his collars, his buttons, pencils, erasers, woodchips, legos, toy car tires, and the rails of his bed. When I would bring it up, his pediatrician kept saying he would grow out of it.

Last year, at the suggestion of his school, we finally took him for an evaluation. As we sat in the office, he picked up pieces of road salt that had drifted into the office and put them in his mouth. The therapist right away said, “Do you know what pica is?”

Actually, I do. As I’ve mentioned before, I was a psych major in college and took the Child Psychology class. Pica was discussed in the textbook, among other disorders. In the simplest terms, it’s when a kid eats lots of things that aren’t food. And I remember thinking, “That is super crazy!” The textbook said it was often due to a nutritional deficiency and thus easily treated, but could also be a behavioral problem.

Guess which type Daniel has.

I’ve been afraid to do any more research, I have been too afraid to reach out to or look for other pica parents.. I’ve been too afraid to do much of anything, aside from continue with behavioral therapy and occupational therapy to try to help him break the habits. I don’t want to research or reach out because I already know the worst case scenario: too much non-food items get ingested, they accumulate in the stomach/intestines/bowels and surgery is required.

So you can imagine the heart attack I had this past Wednesday when we thought that was what we were facing. Daniel had eaten 14 tires off his Mario Kart racers, and so I told him to wear the necklace that’s supposed to help with the chewing. He was really pissed at me for telling him that – the other kids at school make fun of it. So he ate the necklace.

That was last Saturday. By Wednesday he was still throwing up. I took him to Urgent Care, where he helpfully threw up again. They examined it and found black stuff, and said the things he ate might still be stuck. They said he needed to go to the ER right away to make sure there was no blockage.

My husband and I didn’t freak out. I texted my mom, my sister, my boss, and Daniel’s godmother and told them what was going on. Everyone was supportive and wonderful. My friend asked what she could do – I joked to light a candle to the patron saint of pica, if there is one.

We got him to the ER, still sick, and waited for ages for him to be seen, and then for him to have a x-ray, and then for them to interpret the results. (And the whole time he was hangry!) The report came back: no blockage. I finally drew a deep breath and felt my heart start beating again. The doctor literally told us “The pica was just a red herring,” which, of course, made me think of this:

Tim Curry = the best.

We took our Little Dude home, gave him some Zofran, and all was well.

Except now I’m back to where I started: feeling completely lost. How on earth do I deal with this? How do I help my son? Should I do more research, search out other pica parents? What if this happens again? What if it’s worse next time? Why is my car driving in the Chicago River?

So here’s what I’m asking of all of you who read this: if you have any resources, any information, any advice, any suggestions, please let me know. I need help with this one and I don’t know where to begin.

Existentialism Meets Special Needs Parenting

15 Oct

I don’t know when it was, exactly, that I first fell in love with philosophy, but I do remember how. I picked up a book called “Sophie’s World: A Novel About the History of Philosophy” by Jostein Gaarder. It must have been my junior year of high school, but maybe my senior year? Again, I don’t remember the ‘when’, just the ‘how.’ I devoured that book. The further into it I got, the less I understood, but I managed to digest a lot of the concepts, which served me well later in life. (Mostly college. I ended up helping teach my Intro to Philosophy course. Thanks, Sophie.)

Anyway, I know I had already finished the book by the time my senior year Theology class had “Existentialism Day,” because I know I was already familiar with the fundamentals of Kierkegaard (Hey fellow Dane!! Sorry about your broken engagement!) and Sartre. And I remember that some of the other students struggled with a concept that, intuitively, made sense to me. Even if I hadn’t read any philosophy at all, I completely understood what Jean-Paul meant when he said that by not choosing, he was making a choice. I remember my friend struggling with it. “But you’re not choosing, so you’re not making a choice!” “No,” I replied, “Your choice is not to choose.” I didn’t know how to make it any simpler or break it down any further – it just made sense to me. (We also really liked the “Hell is other people” quote, and we wrote that in each other’s yearbooks.)

And now I am paralyzed by Sartre’s truth- by not choosing, what choice am I making?

A couple of months ago, I went for a second opinion on the infertility. The doctor was actually very optimistic. He gave a variety of options, a variety of choices we could make, things we could do differently this time. I took the folder home to talk it over with Ken, and they recommended calling when my next period started so we could do another round of IVF. Our fourth.

And the folder has sat there since then. And, with each subsequent period, no phone calls have been made. I am not choosing to go forward with a fourth round, but I haven’t chosen not to. I have chosen not to choose. But is that narrowing our window? Is it diminishing our chances? Is not choosing the right choice? This is what I have been struggling with. On the one hand, this is our last, best hope for a child. Given the recent hospitalizations for depression, I don’t think adoption is a valid option anymore. Trying on our own has had no success after five years. If we’re going to have a baby, it’s going to have to be IVF. But am I prepared, emotionally, for a fourth failure? For the door closing for good?

So the folder continues to sit. I have chosen, for now, not to choose. But I worry what the consequences will be.

To be fair, some other things have also kept us busy in the meantime. I have one good update, and one not so good.

Good update: Gloria has transitioned to an assisted living facility solely dedicated to patients that need memory care. It’s a fabulous place. She is doing really well there, participating in the activities, helping the other residents, and the staff adore her. Thanks to my part-time schedule, I have been able to go out and visit her every week and bring her little presents. Last week I brought her a Hello Kitty doll dressed up for Halloween as a ballerina and she carried it all around the facility with her and snuggled with it as I tucked her in for a nap. I’m also really enjoying getting to know the other residents – Laughing Betty, who has a huge belly laugh for everything!, Singing Betty, who still knows all the words to Sinatra songs, and Mrs. McLeod, originally from Scotland and still has a thick brogue and is just sweet as can be. It didn’t really occur to me that I would enjoy going out there, but I do. And it’s even better when I bring Daniel – the residents follow him around like groupies! He is so sweet and patient with them and it warms my heart to see my child treat them with love and respect.

She may not look happy, but she's actually saying 'Cheeeeeese'

She may not look happy, but she’s actually saying ‘Cheeeeeese’

Which leads me to the not so good update. Daniel is still really struggling in school. On the recommendation of … I don’t remember who now…. I took him to a local facility that does evaluations for occupational and speech therapy. I don’t have the full results yet, but the occupational therapy evaluation showed significant delays. I was and wasn’t surprised. I knew Daniel had problems, but I was surprised as to the extent of them. The full report should give a better picture, but in the meantime, I’m beating myself up for not bringing him in sooner, for not noticing, for not doing everything I could right away from the beginning. But I kept telling myself things were fine, that he would outgrow his difficulties. But I have to face the reality – Daniel has special needs, Daniel has delays, and Daniel needs extra help.

And now I have to make another choice – do we keep him at the Catholic school he loves, with a teacher who understands him, a principal who adores him, and the friends he’s made, or do we switch him to the public school, where he can get an IEP and more resources and be closer to our house? I can only choose to not make a choice for so long. I have to figure out what’s best for my little guy, and Sartre and Kierkegaard are pretty silent on that subject.

I am focusing on the positives – he is thriving on the swim team, especially with his back stroke. He went to his first overnight Scout camp and got to fire a rifle (!), catch a fish, ride a horse, and play flashlight tag. He spent a recent day off from school snuggling in bed with me, reading my anniversary present – the complete Calvin and Hobbes collection. (I’m a little afraid he’s going to see it as an instruction manual.)

Hell is not other people. Hell is being responsible for another person and being paralyzed by choices for that person. It worked out well for Gloria. I have to have faith that it will for Daniel, too.

Our little Otter

Our little Otter

This kid and his ribs...

This kid and his ribs…

I can’t think of a witty title. Sorry.

19 May

Well, it’s been a long time since I’ve updated. A really long time. I apologize, and, I explain.

Image

First of all, I have a small confession to make. When I first started this blog, it was with the faint hope that, eventually, I would be blogging about our solution to our infertility crisis. I was hoping that I would be able to figure out what direction I was going in (no thanks to the GPS) and blog about a successful result.

Unfortunately, the GPS is as lost as it ever was. Seriously – the other week it told me I was driving into Lake Michigan. (Spoiler alert: I wasn’t.) I was stopped at a red light on Lower Wacker Drive, and I watched the little arrow representing my car drive further and further into the lake. After double checking that there were no fish in the car and that I wasn’t losing my mind, I yelled at the GPS. “That’s not where I am! That’s not where I’m going!” Also, “Are you drunk? Do you need an intervention?”

Oh, metaphors. They are so darn clunky and heavy sometimes. But they’re also true.

Back in December, I got my hopes up. I thought I found a solution and I was eagerly mentally composing an update, a solution. An acquaintance from high school was spreading the word on Facebook about an infant with special needs that needed adopting. I can do that! I can totally do that! Work, income, obligations, what are those? I want this baby! I can take good care of this baby! I am actually uniquely qualified to take care of this baby! Sign me up!

It didn’t work out, for a variety of reasons. Some are still too painful to get into here.

‘But that’s December,’ you say. ‘What happened since then?’

While I was busy looking for a special needs child, it turned out there was one a lot closer to home. Dun dun dunn…. ominous music….

Daniel has always struggled with regulating his emotions, with his fine motor skills, and with chewing on things he’s not supposed to. We shrugged it off for the longest time. “He’ll outgrow that.” “He’s just tired.” “Maybe he was just really really hungry?” We knew he was smart – my goodness, the things he says sometimes blow me away. And kindergarten and first grade were a breeze for him. We got the occasional concerned phone call – “Daniel’s eating wood chips.” “Daniel’s fine motor skills need work.” – and we didn’t brush them off, exactly, but we didn’t worry.

Then the second grade hammer dropped. His grades plummeted. His anxiety skyrocketed. And he was eating things that weren’t food. We took him to his pediatrician, we met with his school, we got him tested, we found a psychologist we love. He is not on the spectrum – my main concern – but he does have ADHD and Pica. And we struggled. Do we keep him at the same private school? Switch to a public school where he might have more resources? Keep him at the school where he’s comfortable but is back in our old neighborhood or bring him closer to home? Continue to work full time or is there a part time slot available? Counseling, occupational therapy, IEPs, homework battles – it’s been just a little busy.

So to deal with the stress, I started exercising more. And pushing myself more. And more. And my foot started hurting. Like, really hurting. Like crying uncontrollably kind of hurting. So I was in an air cast for three weeks while my foot tried to heal. The air cast came off on a Wednesday. That Saturday, Daniel went down our attic stairs in a laundry basket (wheeeeeeeeee!) and ended up in an air cast of his very own. So our string of injuries has also continued.

Daniel is doing a lot better with school, though. The strategies seem to be working. He’s trying really really hard. He made his First Communion in May, he wants to try out for the local swim club, he’s a happy, healthy, (mostly) normal kid, looking forward to the summer.

… And that’s where we are now. I’d like to think we’re on the right track, but I also feel like I am actually driving in the middle of a lake. The lake of insecurity, of doubt, of fear, of not knowing what to do next. It’s kind of rough in here. Whatever’s next, I hope it’s good.

 

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