Along the lines of jealousy

Phrase that Sprung Today’s Post: Blatant Jealousy
I must admit that I’m jealous of the stories I hear from friends and acquaintances about all the Cool Stuff they do with their kids. Such as create castles out of cardboard boxes. Or five-course meals for Father’s Day. Or read a series of books together. I never read Harry Potter because I was saving that for when Holden turned five or six, and then we could read together. But Landau-Kleffner Syndrome put the big ka-bosh on that. LKS does that A LOT. I’m jealous, of course, but then I’m reminded that I shouldn’t try to live vicariously through my kid. If I want to make a papier-mâché version of the solar system, I should go right ahead and do that. Even without LKS, maybe Holden wouldn’t like craft projects anyway.
It’s easy to slip into these mini pity-parties for myself. I planned to be a Cool Mom. An Active Mom. A Creative Mom. I think, when I get selfish in this whole “raising a kid with special needs” “journey” (excited to blog on different days about those words and phrases in quotes) it’s because I don’t get to be the kind of parent I always imagined being. There. I said it. Instead of researching “101 Ways to Spark Your Kid’s Creativity” and ticking those off our summer To-Do List, I’m researching echolalia and anomic aphasia and analyzing Holden’s contextual use of visual learning prompts. It sucks some of the time. Only some of the time. As a total nerd, I like research and I get lost in all the interesting things I’m learning about the brain and the body and how it all works. I get excited and then I remember why I’m doing it, and I’m like, ‘Oh, yeah. I’ve got to apply this’ so I can understand what’s happening with my own offspring.
My friend in Toronto, Karen Gold, studies all the ways that folks narrate illness, disability, and trauma. I’m trying to crowd out what I’ve learned from her as I write this blog post. I don’t want to “meta” myself. And I’m trying to ignore the creative writer in me that says “give them scenes, give them literary moves.” Those are for later, I suppose, in my poems and creative nonfiction. Raw For Now. I just need this forum to get this all out, honestly. When I feel anger welling and/or the aching tickles of sadness creeping toward me, I need to do something with it. And I’ve decided that this is the It.

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12 Responses to Along the lines of jealousy

  1. Thank you for your beautiful and raw honesty. I need to read your words and so does the world.

  2. Demetra Tamvakeras says:

    Hi Christine. I just blog . Thanks . It was very informative. I have a couple of questions for you(if you don’t mind)…
    1)what do you do when Holden is aggressive” are you “robotic” with your response . Do you put your hand out and say “stop” put him on the naughty chair. Ask him to to apologise?
    2) Leonardo can’t seem to learn numbers or letters. He can sing alphabet song but his short term memory I believe is affected so learning these basic things are nearly impossible. How do you do it? Are you doing this? Is it important? Leonardo is in mainstream public school and he is in kindergarten.
    3) does Holden react when he is told what to do and doesn’t want to do it ? Does he lash out? I focus heavily on rewarding and giving lots of attention to good behaviour. “Rolling over positive stuff only” ignoring bad behaviour unless it affects people around him.
    Anyway if you could share your experiences with these kind if issues mentioned above I would really appreciate this
    Thanks in advance

    • Christine says:

      Hi Dimi,

      Thanks for your great comments and questions. I’ll post another blog to address most of them because they really got me thinking. I’ll try to do that today.


      • Demetra Tamvakeras says:

        You got me reflecting on your recent post. So much of this is so similar to our experience. What I find truly amazing is that I too have teaching experience. 10 years in mainstream high school as a music teacher and 14 years teaching piano in my own studio. All this came to an end when my husbands business started at the same time as the birth of our now 11 year old twins . Do I miss it? Yes I do … Can I still work? The answer is no as Leonardo only attends school for 1 hour and 15 minutes a day and my husband is often interstate for work . We have very little in the way of family help… Besides the grandparents really can’t cope with his antics. So I don’t have much help . Respite is virtually impossible (fighting hard though)to get and as Leonardo’s day at school isn’t getting longer I’m really struggling to be honest . But I’m just thinking about some of your teaching comments like “meeting a kid where the kid is at” that really resonated with me. I recall a time where I had a class who only liked nirvana . Of course this was the 90s. This was great as I agreed with them nirvana is great but the sticking point was they had to be exposed to a broad range if music for the aural exam. So yes I looked at nirvana and their melodies ,harmonies guitar techniques broke it right down and then took them on a journey of movie soundtracks as we worked through their favourite music to help expand their “ears”. The biggest stumbling block was a rebellious teenager who resisted anything orchestral😡over time with lots of acting and creative teaching on my part she turned to me and said(mind you this kid was a “grumble bum”)”Miss… Before I met you I only listened to grunge music you have really helped me expand on my taste now I like classical music”… Wow that was one of the most incredible teaching moments of my career . I really did something amazing. Regarding Leonardo meeting him where he is at for me is keeping him out and about and stimulated as much as possible. I take him on bus rides which is his motivator. While on the bus he talks to people and takes in the scenery. I agree repeating the same routines when out and about is critical . I only take Leonardo to “hillsdale” a shopping centre which is really quiet. He knows all the people at the check outs. He talks to them. If he runs off it would be really hard to get run over as there is a very long drive way to get into the place. There are also very long corridors and escalators to get into the main shopping area. Again I’ll be able to catch him in time .like you the idea is to keep him stimulated as much as possible and what ever sinks in sinks in? Like you I ask is he learning? We do speech therapy and music therapy once a week… Not going too great at the moment but still I try. He is aggressive sometimes with his sisters . The poor girls I’ve often said if you want to go to boarding school that can be arranged … They don’t want to.. Which is lovely . Like yourself I do feel sad and upset about this situation. Often I’ve asked myself…”what did I do to deserve such punishment ” but it is what it is. I have excepted this. I work really really hard just hoping that my son recovers . I just hope he is a functioning adult as if something happens to me what will happen to him? I don’t want to burden my twins with this . So I just slog it out hoping that something positive will eventuate.??

  3. Christine says:

    The kid who liked Nirvana is a great anecdote. It says a lot about you as a teacher to put the extra work into helping him make connections. *awesome* And I can’t imagine having more than one child as well as deal the tumult of LKS. It certainly influences everyone in the family, but not always for the worse. Your daughters are probably learning a lot of good life lessons even though it’s not easy. I can relate to feeling “punished,”–I’ve felt that before, the “what did I do to deserve this” but it’s rare because I had four miscarriages after I had Holden. They give me a unique perspective; in that regard, Holden is my “miracle” because I couldn’t seem to make any other pregnancies stick. I try not to think too much about what Holden’s future will be like. Holden’s doctor says he “can’t look in the crystal ball” and see Holden’s prognosis, so how can I? He’s the expert. Everyone says that puberty makes a huge change for the better in regard to kids with LKS, so I just try to stay in the moment and have faith in the “change and catch up” phase. Actually, that’s how I feel about Holden’s learning, too. To try to enrich and encourage him with learning when possible and not worry too much about what he’s not learning or not. Wow. That’s a lot of self-disclosure. I’d better press “post” before I chicken out.

    • Demetra Tamvakeras says:

      Thanks for your reply. Some more questions(sorry😮)
      1)How old is Holden ?
      2)Does Holden drool a lot?
      3)Is he on a cocktail of drugs?(Leonardo … Epilum,ospolot,zarotin
      & clobazam …predisolone once a week)
      4) Have you looked at MST surgery?
      5) you mentioned you use sign… How long has this been the case… When did Holden start sign
      6) is Holden in a “special school”
      7) does Holden have a mandatory sleep during the day?
      8) have you tried any alternative medicines like craniology

      MST apparently still happens at Cleveland clinic but Australia doesn’t endorse this even though they had great results in the 80s and 90s. I’ve decided I want to persue this and I’ve found the surgeons that did this back in the 80s and 90s. Not to say it’s something I’ll rush into but “I don’t want to leave any stone unturned “. I’m more preparing myself for a 10 year battle with LKS. If surgery is an option and it’s something that would help my son then only after thorough consideration would we consider this. I’m still in the research stage. I’ve actually sent all of Leonardo’s reports through a doctor friend of my families who was working in the US … It came back that we could pursue surgery but Leonardo should be ok provided epileptic activity is controlled(by how much?)

  4. Christine says:

    No worries about all the questions! I like them. They help me be more specific. I can answer a few here.

    Holden is 8 1/2. He had his first seizure that we recognized on January 17, 2010, just a few days after his 4th birthday. But in hindsight, he probably had one at his babysitters a few months before, but it was during nap time and we only had the “fallout” pieces to put together (vomit, wouldn’t speak for several hours, sleepy, etc.) His wasn’t diagnosed with LKS until September 2012. The reasons why… another blog post. 🙂

    Last September he had a MRI and MSI to determine if he was a candidate for brain surgery, but because he has spikes on both sides of his brain (still unclear about what this means) he’s not a candidate for it.

    Holden’s not in a “special” school. We lived in a small town (about 20,000) and last summer the distract hired an amazing teacher for Holden. She teaches him both sign language and content material as he is able to pick things up. He recognizes far more signs than he uses right now, but really, the sign language is a long-term investment in his learning and ability to communicate. He is rarely mainstreamed with other kids his age, but tends to interact with his peers during art, music, p.e., etc. as he is able.

    Haven’t noticed the drool. But he does like to chew on things from time to time.

    I try to keep Holden from sleeping during the day. Naps usually throw off his sleep at night–even a short nap can make night sleep tough.

    Holden’s medications are similar to your son’s….a few different ones and I think they have slightly different names here. But for the most part, a similar cocktail.

    We haven’t tried any types of alternative therapies, but I’m always open to learning more about them.

    • Demetra Tamvakeras says:

      Thanks again for your responses . I have to say your blog is so eloquently written …a very enjoyable read…thanks . I guess I feel a lot better about my situation reading your blog. In the midst of dealing with the total bedlam of LKS you still manage to find beautiful words in the English language to articulate your feelings and experiences. Good on you! You have me on a roll now with more questions. I guess I better have another go … Before you get totally sick of me!
      1) -autistic traits- Does Holden ever display any autistic traits? You mentioned he chews on things? I find that Leonardo “retreats into his own world” this is only when he is very very tired. He does “repetitive play” with rubbish bins and rubbish trucks. When Leonardo had his 3 regressions last year that’s all he did day and night.
      Nowadays at school (kindergarten)he has come a long way with no repetitive play at all.
      2) -social- has Holden made any friends at school? Leonardo has. Only a couple but I’m excited that he has pulled it if I didn’t think he would…They play with him and want to interact with him. Initially school was a total disaster with Leonardo lashing out at his class mates. There is none of this now…thank goodness. Sometimes Leonardo can be difficult and refuse to do as he is told but he is getting there . We are seeing improvements. The school is amazing and I’m blown away by the brilliance of the teachers there. The neurologist insisted on mainstream and I ran with it. At first I thought ” this kid isn’t ready for ANY school let alone mainstream!” My gut told me he was right but I was scared. Gee it was so tough. The language he has picked up is incredible. I’m hearing so many more “expressive sentences” now. It awesome. Still such a long way to go. He isn’t accessing the curriculum at all. It’s more about being at school being with his peers…building social skills. You can probably tell “I’m counting my wins how ever small they are”!!!LOL
      3)-epileptic activity- Does Holden have any “walking issues” due to epileptic activity. Or do you see any signs of epileptic activity affecting him. Like some times his word finding isn’t as good. He retreats into himself? What about swallowing? When epileptic activity is high does Holden struggle to eat? I generally find this to be the case daily. It’s an absolute pain as his eating patterns are all over the place… I push good food. Especially fruit (I even film him eating good food and play it back to him constantly…part of my brain washing plan!LOL)Vegetables are not as easy he only eats carrots 😞but as long as it’s not processed garbage I’m thrilled! I’m a huge believer in diet… I think it’s critical. My daughters eat well now . Gee it was hard!! Especially Erin. Occasionally they have “sometimes food” but mostly it’s good stuff. Back to Leonardo .. I have noticed a lot more vocab . The nuero said that is the main thing to look out for .
      4)- neuro plasticity – have you studied nuero plasticity ? This is a long way off but I have recently been introduced to the work of Barbara arrowsmith young . She is Canadian based and is currently setting up classes globally. In Australia she is unstoppable! I went to her seminar last Friday and I can tell you it was a full house . I know she has set up a school in South Carolina . I guess America is just as keen as we are here in Australia . Anyway I plan to follow her as these methods don’t apply now . Hopefully they will if Leonardo recovers? From her talk I learnt a lot about how it applies to Lks . She says that the more exposure a child has in terms of learning experiences the more nuero pathways they set up and yes it is possible to re wire your brain. Right now I read the “classics” to Leonardo every night. I say to myself “you may not be able to read but at least you are familiar with good classic English literature . Hopefully that will be stored in his long term memory for later use??? I also think the social aspect is highly important. So now we have school holidays I’m trying to immerse Leonardo in social opportunities. I also find this is when he is most happiest , he is most motivated. He loves people. He spends a lot of time rattling off names “mummy I miss … Jessica etc”. As Leonardo only goes to school for 1 he and 15 mins I think he is lonely…?
      5) do you think Lks kids can play sport?
      Leonardo is enrolled into soccer(special needs soccer) it’s such a struggle . Sometimes his epileptic activity is high and his all over the place. The coach is awesome and we are collaboratively trying to come up with a plan. I really think it’s important even if he is not 100% involved. It’s better than nothing.
      Your thoughts please… I mean pretty please😍

      • Christine says:

        Sorry it’s taken me so long to reply to your great questions.

        As far as autistic traits, I would say “yes,” on some days. Like you mentioned, rough days. One that is really mystifying is “transitioning” or his ability to move from one “space” to another “space” and organize his time or “structure” it. For example, he will want to get ice cream, but on the walk there he will sit down 7+ times on the sidewalk. Just sit there. Not angry or anything. Just plops down on the cement. Sometimes he chews and puts stuff in his mouth. I wish I knew more about autism–he has some traits but his neuropsychologist doesn’t think it’s helpful to frame them in the same way. Maybe because the behaviors aren’t stemming from the same problem. He does some repetitive play… hard to know, though, since he really doesn’t play with things like Legos, blocks, trucks, etc. it’s mostly with puzzles, books, and iPad.

        2. Holden’s friends? Sigh. Tough. That’s an emotional subject for me. I might try to write a blog post about it soon. Right now, I’m just mulling it over. “Not accessing curriculum.” That’s a good way of putting it.

        3. Walking issues? None. Eating issues? A ton. But mostly because he can’t *focus* on it when he’s tired and grouchy. He, too, loves carrots. I can’t believe his skin hasn’t turned orange yet. I don’t push him to eat because he does eat well, and plenty, when he’s hungry and focused. Before LKS, he loved to explore and try new foods. Now… not so much.

        4. Can we talk more about neuro-plasticity? I have faith in it. That’s how I’m approaching Holden’s experiences, but I’ve really revised the ways I see him learning. Visual Visual Visual. I’m writing a poem about it now.. it might turn into a blog post or essay…

        5. I don’t think Holden can play sports beyond “tag” and “kick the ball around.” He LOVES to swim, though, and has great muscle memory from his swim lessons at ages 3, 4, and 5. He’s a little fish. He also is good at basic movement skills. He’s got good balance, etc. I’m going to try to get us back into a martial arts class for “families”–one in Brookings was super cool and supportive of Holden, but we stopped going because it was a steroid night and he just started to meltdown a lot… I studied martial arts for years, so it’s something I know.

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