Tuesday –Denial Ain't Just a River In Egypt (It's in Holland)

[ninanevermore]

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I remember first reading that silly "Welcome to Holland " essay years ago – I think Dear Abby ran it in her column – and thinking it was sweet. I thought of the families I knew who had "special" children and figured it was the kind of nice thing you clip and give to them to make them feel better. But it had nothing to do with me.

If you've never read it (and don't want to read it), it describes having a handicapped child as being like planning a great trip Italy, only to step off of the plane to find yourself in Holland, instead. It goes on to explain that while it takes awhile to get used to, you find your way around and learn to appreciate the charm and beauty of where you wound up, even if it's not where you wanted to go.

In the past few weeks, I have come to realize that sweet only half describes the essay: actually, it is bittersweet. The dawning awareness came as I am starting to grasp that my son's problems are not just a phase he will quickly outgrow, and that there is something seriously different and unsettling about the way my child processes and interacts with the world around him.

But it's a little late for anyone to say "Welcome to Holland" to me. I've been here for two years now. I just never noticed that all the signs around me were in Dutch. It's sinking in now, even as a part of me still keeps saying, Maybe this is just a part of Italy no one else knows about. Maybe when you wake up in the morning, someone will be able to explain why the signs are in a language you don't understand. But that voice is growing more and more quiet and less certain. Maybe? Probably not. I'll shut up now.

In aviation, navigating an aircraft by sight and feel, without any instruments to guide you, is known as "flying by the seat of your pants." Pilots flying a plane without instruments must judge the movement of the airplane by the vibration and shifts in gravity of the chair they are sitting on. It is a nerve-wracking and uncertain means of flying, and any pilot who has done it will tell you that they wished they hadn't had to.

It's one thing to accept that, fine, I'm in Holland and not Italy. The signs are obvious and everywhere. But I don't even know what part of Holland this is. Until I get a diagnosis, I will have to pilot my life by feel alone. I have an appointment with an assessment clinic in March of next year, unless I can convince them to get me in sooner. This will be our second visit. The first visit told us almost nothing.

"Until we see how he acts in a group environment, we really can't come to any conclusions," the doctor told us back in July. "Why don't you come back in 9 months? After he starts school. How about March?"

At the time, March didn't seem like an eternity. I know better now.

We were hoping to get some information before he started school, so we would be prepared for any problems. The medical establishment is not geared toward preventative medicine, though. They are geared toward letting everything go to hell first, and then stepping in after the damage is good and apparent. Intellectually, he tested as normal to above normal. She was a little concerned that when he drew a person he didn't draw a face, but we've seen him draw faces on his pictures before and we told her as much. I guessed he was just feeling "blank" on that day. She didn't like that he couldn't read yet, but we pointed out that he had yet to start school. Neither of us could read before we started school, either. She thought we should have been teaching him at home. We thought she was sweating the small stuff, when we were there to sweat about why the last time he had been in a group environment, things had gone so very, very badly.

For two years, he was not in a group environment, and for two years he did very well. He can function in small groups, with no more than 4 or 5 children. With just a few people around him, he is pretty normal. In a room full of 20 other children, he is anything but.

If I were the parent of one of his classmates, I would not want my son in that class. I would fear for my child's safety, and worry that my child was not in a good educational environment with another child who cannot sit still and who throws things, shouts and hits, bites and kicks people. I would wonder about the home environment that would produce such a little monster, and about the quality of parents raising him and allowing him to be so out of control.

Of all the things I miss about being the parent of a child I thought was normal, I think the luxury of self righteousness is one I miss the most.


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Comments

[noblwish.livejournal.com]

He may yet grow out of this. It just may take a little TLC ("T" is for "Therapy") for him to do so. Don't lose hope! You have a perfectly precious child and he can and WILL learn to function in this crazy world. It just may take him a little longer than "average."

[neanahe.livejournal.com]

He has impulse control when he's not in the "red zone." I think therapy that teaches him how to either stay out of the red zone or direct his anger at objects (or toward a neutral activity, like running or sports) and away from people. I think he can learn.

But I'm not putting any bets on the time frame. I'll take this one day at a time.

[magsmom.livejournal.com]

Ahhh... the welcome to holland realization. My sister (whose son is autistic) sums up that essay this way : FUCK HOLLAND. Or, as we often say - If it ain't dutch, it ain't much. Another friend of mine says it should be called welcome to somalia.

In my humble opinion, essays ike that are written for the parents of normal children so they can "think" they understand. It has not bearing on real life.
Self righteousness will return. Your son will learn skills to help him adapt. And the other mothers will just have to learn that not every kid is the same but ALL kids get to be educated.

You may or may not get a diagnosis. It's hard waiting. But arrange for an IEP and let them deal with what they KNOW is there, not what it may ultimately be called. If he has trouble in large grop settings, he needs to be in a smaller class, etc. You treat the problem, not the label.

Good luck. Sweet pea will be fine and believe it or not, so will you. I am sending some virtual tulips and chocolate - and maybe a map, while you navigate around this new area.

Hugs.

[neanahe.livejournal.com]

The essay was written by the mother of Down Syndrome child. I think she was just trying to give people an idea, if only a shallow one. It's like trying to describe the color blue - or color at all - to a person who has been blind since birth and has no concept of colors. You are forced to rely on metaphor to create an idea of something they would not otherwise grasp.

I don't hate the essay, I just used to find it overly sweet. I only noticed the bitter-sweetness - she is describing a scenario of being lost, not having any idea of where you are or where to go, and having everyone around you speak a language you don't understand - when I wound up in "Holland" myself. Read between the lines of the essay, and you see that the picture she paints is very frightening. She wrote it in a way to downplay that aspect, because she was trying to reassure the outside world that it's not as awful as they think; that her life and her child's life are different, but not without beauty and joy. I get that.

Flying by the seat of my pants bothers me more than being in Holland, if that's not too weird. Part of me has realized something is not right for a long time. I just want answers, and direction, and I want them now. Where's the #$%damned consulate's office, anyway??? Oh yeah, they can't see me until March! :P

{{hugs back}}

[magsmom.livejournal.com]

no. I don't hate it either. there was a time that I found it quite soothing. It is only with the cynicism of time that I find it so schmaltzy. And I know it was a mom of a DS child, but the audience who takes it to heart are much more the parents of able bodied kids than cynical folk like me.

I never picked up on the feeling of being lost. She was headed to Italy anyway, but she had the guidebooks and had done the prep. She's just playing catchup. (giving rise to another euphemism I hate - developmentally delayed - she's 16 fer crying out loud, just how long is this delay?

I have a whole take on this essay that I will post about - it is the inspiration for the title of a book I will likely never finish writing.

the consulate is gazing out the window at the tulip fields agog at the beauty of the colors. Ignore the fact that you are trying to read Dutch signs with an Italian dictionary and just look at the colors.

[neanahe.livejournal.com]

The consulate's office is understaffed. To get in, you need a referral from your doctor (at least, to get the insurance to pay for the visit). Once you get that referral, you send in your paperwork and they call you back in about 6 weeks. After that, there is a YEAR LONG waiting list.

Do you know how long a year is when you have a child who is not just acting out, but acting out violently?

You would think the people at Texas Children's Hospital would say, "Wow, look at the demand for this! And here we are the only place that offers these services in this entire region! We should expand the program so that people can see us when they need us, and not have to wait a year."

But they are busy gazing at tulips that it hasn't occurred to them.

"Oooooooh. The colors....."

[magsmom.livejournal.com]

not sure what your financial situation is, but have you considered paying for the initial visit out of pocket. or at least telling them that's your plan. If the wait is as long as they say, you could at least get in the queue a few months early. It's all deductible - which is not as good as a complete refund, but it's better than nothing.

Also, does the state have a program - or perhaps this is it. There are federal lows requiring the states to handle this stuff and most of them do. I would contact some resource groups - parent based -- and you may find there are easier ways.

It's no fun.

[skeletaltime.livejournal.com]

I may not be different in the ways that your sweet pea is, but I certainly am not normal. As far back as I can remember, I struggled daily with anxiety, depression, attention deficit problems, insecurities on top of insecurities... My parents didn't recognize any of this as something abnormal or meriting special attention, therapy or any other treatment. It took growing into my teens and then twenties to recognize that all those signs around me are written in Dutch when I had been told forcefully for years that they are actually in Italian and why can't you read them?

I have struggled in different and sometimes harder ways than normal people do, but years of countless panic attacks, lost opportunities I couldn't focus on or muster the power to handle, nights spent sobbing, 1 honest suicide attempt and multiple prescriptions/therapists later, I am still here. I am healthy, I am generally happy (the good days outweigh the bad, for sure) and insecurities aside, I think I'm a pretty good person and I think that I have a pretty cool life. It may be hard at times but it is full of rich experiences I wouldn't trade for an easy, bland life. My differences from normal people are my favorite things about me and I cherish being unique and seeing the world the way that I do.

Sweet Pea may have you gawking at Dutch words you think you'll never understand but his differences may be the very things that make him an incredible person as he grows up. And from a girl whose family not only insisted this is Italian dammit, why won't you read it?! but went as far as to deny the very existence of Holland itself, let me say that you are doing your son one of the biggest favors you could ever do for him. One day he will realize that he's different and remember how hard it was on him when he was younger, before he knew how or why he was struggling. It will occur to him how hard it must have been to care for him through that and he will thank god you are his mother and know just how much you cherish him.

You may not feel like it, but you are a hero.

[writingmoments.livejournal.com]

Thanks for posting this comment. I've been struggling all afternoon with "a Holland child" myself. I don't know if he will ever realize how we..tried but I do hope someday he knows how much I cherish him. If he could only see it...

[neanahe.livejournal.com]

Children rarely do until they are adults looking back. Becomeing a parent has a way of opening your eyes, for one thing. {{hugs}}

[skeletaltime.livejournal.com]

I wish you the best in the challenges of raising him - sometimes good things come from the scariest genesis. Many of the "holland kids" I have known have turned out to be brilliant alternative minds and the world needs us to color it.

[neanahe.livejournal.com]

This battle has just started; my heroism is as yet unproven. But thanks for the vote of confidence. :)

I think that with his intelligence and passion, he can still do great things. But he flies into rages (anger is not a strong enough word to describe the intensity) and he is going to have to learn how to channel that energy away from doing damage and toward something else. Otherwise, his life ( not to mention the lives of those around him) is going to be very difficult.

I'm glad you've persevered. :)

[skeletaltime.livejournal.com]

I think the most important part of your diligence in finding a solution for him is the timing. Habits are hard to break and my delayed awareness of what my problems really were and why everything seemed so difficult for me came far later than I would have liked.

For a long time, all I knew was that I screwed up all the time and assumed that I was inherently broken and inadequate. The word that always floated through my mind was "subhuman" - I was subhuman because I wasn't like everyone else and couldn't handle the hard parts of life without breaking down all the time. Believing I was below everyone else for so many years really rotted away my self esteem and the damage still effects me. You treating sweet pea's struggles with patience and love and seeking solutions right off the bat will save him years of pain and give him a head start on building good habits to cope with his personal challenges. If my parents had had evaluations done, taken me to therapists and taken my issues seriously as a young child instead of treating my problems like I was lazy, dramatic and spineless, I would be much better off now and it would have spared me tons of hurt.

I think the best analogy I've ever read about my problems in particular was in a book on adult add - the psych that wrote it is a firm believer that add is more of an alternative way of thinking rather than a "disorder" or shortcoming, our brains just do not function the same way a normal person's does and we are living in a world that caters to normal people. The author compared people with add trying to handle situations the way a nomal, type A would, rather than developing the habits they need as an alternative thinker, as a bird being discouraged because he is unable to swim. You can't compare a bird's worth to a fish's by their respective success or failure at swimming. It's not that birds are failures, it's just that they are naturally meant to fly instead. Fish and birds are just two different creatures that naturally have to use very different methods to go through their lives successfully.

I'm not suggesting that sweet pea has add or anything, I just find that analogy a very strong one in approaching how those of us who are "different" view ourselves. Different is different, not necessarily worse. Sure, he can't swim with the school of fishes, but maybe that just means he will be able to soar by all himself.

[writingmoments.livejournal.com]

Thanks for the fish/bird analogy.

See, my "Holland" son...personally, I do think he is amazing. He keeps his own livejournal (on and off) in fact and he is so creative. He keeps track of so many things that I can't remember.

But, society says everyone must swim, even birds. And I'm caught in the middle because some of this he should learn (like math.)

But I do tell him that he is wonderful just the way he is. He says, "You keep trying to change me" and I try to explain, it's not that I don't like how he is but he does need to function in some ways...here in the water.

It's a very fine line though. I love the Percy Jackson and Olympians series (for children) because it writes of how these ADD and dyslexic children have a hard time learning in school because they are actually demi-gods. Like they can't read English all that well because their eyes were made to read Greek. I know it's fiction but my son loves those books so much and I'm glad Riordan wrote his heroes that way.

My son is still very proud of his author signed books and his photos with Riordan.

But anyways, I like the metaphors. My son is in ACE (the gifted program)and some of the solutions he comes up with are just amazing. Like I had a blind friend here to visit and I said she might bring her seeing eye cane and he said, "Yeah, she needs it because the GPS in it will tell her where she is."

I explained canes do not HAVE GPS in them...but I still think that was kind of brilliant idea for a 9 yo to have.

Sorry this comment is so long.

[neanahe.livejournal.com]

I have a long list of ADD people on my side of the family. My husband has some sensory processing issues (he would tell you that he is just a picky eater and doesn't like crowds, but that would be arguing about whether the chicken or the egg came first).

My goal is to teach Sweet Pea to cope; we just need to figure out what tools are at his disposal. He will learn to fly, but there may be a few crash landings while we figure out just how his wings work.

[mpacket.livejournal.com]

Why does he need to be in a large group of 20 all of a sudden? Could he be in a group of 4 or 5 with short (starting at say 5 minute) visits to the 20 group and see if like an allergy he can lose some of the sensitivity?

Please don't be offended if this is lame. I'm dumb as a hammer but I mean well.

[neanahe.livejournal.com]

Our "Team Meeting" will be in the first week of October. I'll see what options there are for a smaller group or at for a place he can escape to and decompress. Occupational therapy for kids like my son (from what I've read) does just as you suggest: expose then to the situations and sensation they find unbearable in incremental doses to help them learn to tolerate them.

We are just at the beginning of this whole thing. Whatever the solution turns out to be, I doubt it will go off without at least a few hitches.

[millysdaughter.livejournal.com]

**hugs**

Been there, darling. They dragged me into facing the fact those signs were printed in Dutch while I resisted the very idea with every step.
It took almost five years to get any sort of actual diagnosis, and then we could not get any two doctors to AGREE on the same diagnosis. That took much much longer.
See, firstborn is not one of the sweet little Down's kids, and she did not fit into that particular box...but several teachers tried to put her into that box over the years.
Sweetpea will find his own place to fit in, but he might not always fit into the particular box they try to tell you is the right one.

[neanahe.livejournal.com]

My son's behavior at school is so extreme that there is no way I could deny that something is going on with him.

Doctor's don't recognize sensory integration issues as a stand-alone diagnosis; they like to lump it in as a symptom of something else: ADHD/Asperger's/etc. Aside from certain issues (like his refusal to eat all but a few select foods), when he is not is a stressful situation he is pretty normal. I don't give a whit about diagnosis, so long as an effective treatment can be found.

This is not just about a 6-year-old boy; it's about a future 26-year-old man who will need to be able to function in society. People are getting hurt, so doing nothing is not an option.

Adulthood is easier than childhood for so many "outside of the box" people. Is Firstborn doing okay now?

[millysdaughter.livejournal.com]

She is in a group home and has a sheltered workshop job, working in the hospital laundry. The thing that I find amusing about the hospital laundry is they have half of the workers contracted through the workshop and half are "ordinary" people hired off the regular man-in-the-street application process, but they have much better work ethics and work output from the workshop population than they get from the "general population." The average minimum wage worker does NOT want to work very hard these days, from what I can tell.

[lil-ms-drama.livejournal.com]

The problem for me is that Holland is part of Italy. They speak a bastardized version of Dutch Italian, only everyone around me is trying to convince me that it's all 100% Italy/Italian and exactly the way it's supposed to be.

[lil-ms-drama.livejournal.com]

Oh, and I know for fact that I'm not in Italy. Everyone else is trying to tell me that I am even though I can plainly see the signs are in Dutch.

[neanahe.livejournal.com]

First off, no offense is meant, so don't be mad at me: you seem to process the world in many of the same ways that Aly does, and she is official, diagnosed ADHD. I would not be surprised if you (and through your DNA, Ian) were not also ADHD.

Not only are you in Holland, I think you were born there.

(are we still friends?)

[lil-ms-drama.livejournal.com]

Ah, that's just our dramatic side. Besides, when you have so much happen in such a little time, you're allowed to be dramatic ;P

I honestly don't think I'm ADHD because most ADHD people don't enjoy vegging out in front of the TV or computer all day every day and honestly if given the chance that's what I'd do. Besides, coffee wakes me up, not the opposite.

Begrudgingly still friends (and only because you kept pushing it are we begrudged instead of just still friends),
lil_ms_DRAMA

[neanahe.livejournal.com]

ADHD has a little sister named ADD (no H), where they do, indeed, tend to veg. It doesn't mean one can't concentrate; in fact, they can concentrate to the point of exclusion of everything else provided they find it interesting. There is also a tendency to not read the non-verbal intensions and meanings of other people the way a "normal" person would. I see you and A. have some of the same kinds of frustrations and misunderstandings with coworkers and the like. It's scary how much alike you two can be. This is just the observation of an outsider looking in.

I mean scary in a good way, of course. ;)

Now are we still friends? Want me to hide this conversation? Or delete it? I can and will if you want.

[lil-ms-drama.livejournal.com]

Well, I'm not sure about Aly, but I definitely have been told straight out from co workers and bosses things like they didn't like me, I was weird, and I was unprofessional. Nothing non-verbal to clue in on there.

As far as concentrating to exclusion, not me either. I have to focus and make a point to focus to get anywhere to do that.

[neanahe.livejournal.com]

When you like something (TV, computer) you are into it (veg); when you don't, you can't focus (pay deficit attention, so to speak). You miss the non-verbal cues people give you, which makes people believe you are weird and just plane rude (i.e., non professional).

So much in human communication is non-verbal; people don't say things because they expect everyone to absorb and understand the rules. A typical child watches the adults around him or her and picks up on these rules easily.

However, those with ADD, ADHD, etc. (there are dozens of atypical brain designations I've found in my recent lessons in "Dutch") process the world a bit differently and fail to pick up on the unspoken social rules which are not obvious to them. For this reason, they are perceived as trouble makers by those who do know and follow the unwritten rules. Thus, people don't like them. Why they may not like you, for example.

I am not an expert. I do, however, come from a family where the ADD & ADHD designations are pretty common traits. I have observed people with these traits my entire life. When I say you share a lot of their characteristics, it's just an observation. It may be worth thinking about and looking into, though. If a child is not hyperactive but is attention deficit, it's very easy to assume they are lazy, stupid, or just don't apply themselves. Its very easy to assume this about them when they reach adulthood, as well.

In fact, one of my brother's favorite books on adult ADD is called, You Mean I'm Not Lazy, Stupid, or Crazy? Look it up on Amazon, and you'll find a dozen or more other title on the same subject. One of them may be worth reading, just to see if the shoe fits. :)

(PS: I'm used to people like you and don't make the same judgments that people who aren't. For what it's worth, I like you.)

[lil-ms-drama.livejournal.com]

Awwwwww. I feel warm fuzzies. Thank you. I still like you too. :)

[sidneymintz.livejournal.com]

I wish we could live near each other and co-homeschool. And that we had a million dollars to help :)

My sweetheart was a "sensitive" child and they didn't think he'd finish high school. He wasn't diagnosed with anything because they didn't do that in the 80s. He got his PhD in 2006, at the age of 30.

[neanahe.livejournal.com]

If I had a million dollars I'd be rich, I could hire a private tutor while I work on my novel. I'm a little too attention deficit myself to teach, I think. :)

I'm hoping that my son's just a little behind the curve on the development of his impulse control and that it improves as he gets older. Jeff gets tense when there is a lot of noise and people, too, but he doesn't lash out. I have a bit of hope.