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Sep 08 2011

Giving up normal

It’s been an intense ten years of parenting. That one sentence is up for Bloggy Understatement of the Decade. Ten years of worry to nearly the point of an ulcer (but bonus! when your stomach hurts, you don’t eat, and thus your pants fall off! Huzzah!). Ten years of research and reaching out and trying to find help. Ten years of second guessing myself, doubting myself, hating myself.

Because nothing was normal.

I try hard, so hard, to believe that “normal is just a setting on the washing machine.” (Huh. Just looked. Even my washing machine isn’t normal; that word is nowhere to be found on the machine.) My whole life I’ve tried to be normal, with varying degrees of success. I’m married, I have two kids, I have a dog, I have a minivan, I have a mortgage…all normal. Except. Little around here is normal. Poke around this site long enough and you’ll certainly find that.

Normal. Society’s way of forcing us to be like everyone else, even against our own souls. “Watch out for that one, she’s not normal.” “He needs more help, he’s outside the norm.” “Normal kids don’t act like that.”

Normal. Forcing us against our selves, since the dawn of time. Normal kept everyone in line. Normal was safe.

I’ve tried for ten years to get to normal with A. “Oh, if XYZ works, it’ll be normal and everything will be fine.” XYZ could equal getting the ADHD under control, calming the SPD, getting his dangerously underweight self back onto a positive growth arc, strengthening his executive function skills, you name it. The sheer cost of that search horrifies me. Normal.

This afternoon I had a conference with A’s 5th grade team. While I thought things were going reasonably well for him, my gut churned most of the day. New teachers to get up to speed, new expectations, new everything. Fifth grade is the year they start preparing the kids for middle school, so expectations are higher. Add to that the fact that the “odd” years (1st and 3rd grades) of school were painfully challenging, it’s no wonder I was a wreck. I even took the dog for a walk this afternoon to try to calm down. I can’t remember the last time I took Rosie for a walk in the middle of the day. While my mind kept trying to convince me everything was peachy, my gut…well, shoulda listened to my gut.

Three weeks into the school year and there are issues. Issues with attention, with direction, with anything regarding executive function skills. Issues with social interactions, with group projects, with not recognizing how his actions affect others. An hour of getting to know each other so the four of us could help A. Thirty minutes in I was praying we had wine at the house. And throughout it all, a quiet little whisper got gradually louder.

Aspie

Talking about the next step in RTI, why he doesn’t already have an IEP, and what is twice-exceptional exactly?

Aspie

Discussing what to do in class, at home, a possible social skills class during recess.

Aspie

Mentally recalling all the not normal for a ten year old boy actions that are common in our house.

Aspie

And my gut churned. Because none of this was normal.

A was around two when the big push for Autism recognition and research began. And I remember thinking, “Whew, dodged that bullet. He’s making all his milestones and all is well. He may be hyper and not sleep much, but he’s social and makes eye contact and plays well with others, so whew.”

I should never exhale concerning this child, I swear.

For some time I’ve wondered if A was Aspie. He does have Sensory Processing Disorder, which I’ve always thought of as “Aspie Lite,” but with occupational therapy has gotten much better. He certainly knocks on the door of that diagnosis, if only to play ding-dong-ditch with it. Ring! Run! Ring! Run! He’s always had some of the indications, but never really fit. Now I wonder. It’s almost as though the move has made some of the features more prominent. Asynchronous development in a 2e kid is one thing, but sometimes I think it’s a touch past that.

As the teachers and I chatted…and they really are wonderful women, just confused and flummoxed, as they’ve never had a (ahem) complex kid like this before…another little voice in my head started up.

Homeschool

I tried to get it to STFU, but it evaded my muzzle.

HOMESCHOOL

I really don’t need that voice in my head right now. Moving damned near broke us, I’m desperately trying to find a full time job because we’re looking at the third pay cut in three years, and I don’t think I’m strong enough for it.

HOMEFREAKINGSCHOOL

Seriously, the voices in my head are out of control.

I am scared. I am overwhelmed. I feel alone. I do not know what to do. We have an appointment with a noted ADHD clinic next week for assistance and support, so that will be the first of many steps towards something resembling an answer. But striving for normal has ended. It will never be part of A. He will always be an outlier, that is who he is. Schools are designed for normal, and my son.just.isn’t. I must learn to no longer accept normal myself, so to best help my son. I must do what is right for HIM, and to hell with society. Society wants normal, they ain’t gettin’ it with him, and I’m not going to make him suffer for society.

Normal is now only a town in central Illinois, where I went to school and met my husband. Nothing more.

It no longer has a place in my home.

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  1. Leslie Graves

    The truth in my life Jen? normal has always been the abnormal. Respect Les

  2. Anne

    So touching. We’re homeschooling now because of this. I can tell you that we are all much happier and more relaxed now. We also feel more “normal” because no one is telling us on a daily basis that we are not. Ds’s interaction with other children has improved, as well. He’s not as stressed out so he has been able to enjoy their company more. Homeschooling is a big move, but one worth considering.
    -Anne

  3. Corin Goodwin

    Um, Jen… have you read my book yet? It’s the slightly more expanded version of what you just wrote. Schools are not designed for kids like ours. They’re just not. And homeschooling them? That’s hard, too. There is no easy choice, just the best one you can come up with for however long it lasts… {{{hugs}}}

  4. Earthami

    This spoke to me. I homeschool for many of the reasons your inner voice is saying to you. I’m just now facing the ‘normal’ label with The Boy. Thank you for a wonderful essay on it.

  5. Chelle

    Normal? Is relative. Piss on normal, you have exceptional. Hang in there my friend.

  6. Cynthia

    We started homeschooling our son a few months into his 4th grade year. I think it was the best thing we could have done for him at the time. It has been a much better environment to help him with social/emotional/EF issues as well as providing amazing educational opportunities. Economically, it has been challenging. I left my (new, less than a year, full time)job to be home with him and my husband just lost his job 6 months ago. There are a lot of FREE resources we use through the library and the internet as well as local programs.
    The transition was hard but things have gotten so much better – this will be our 4th year homeschooling. Good luck in whatever you decide.

  7. Ingrid

    My mind was yelling “homeschool” as I read your trials and tribulations. We got to homeschool after similar issues. At home, we are all normal 🙂 It’s not so scary.

  8. melissaz

    {{hug}}

    You know A best, so I know you’ll make the best decision for him. Trust yourself and it will work out.

  9. Rochelle

    Once was told that Einstein had many of the sleep disorder issues my then 2yr old had….I proceeded with “don’t give a crap about Einstein, what the hell did his mother do?” It does get better I promise.

  10. The Casual Perfectionist

    This is where I point out that you ARE closer to Normal…Normal, IL, that is… Geographically speaking. 😉 GOOD LUCK!!

  11. kim/reluctant renovator

    As I read this I think–you need to connect with @parenthacks or at least track down everything she’s written about homeschooling her son. I think there will be a few helpful points of connection.

    There is no edutopia- believe me, we’re tried to find it. School is made for normal. Then there are the gifted schools that are like the island of the misfit toys from an outsider point of view, but so wonderful (in some ways) from the inside.

    I’ve long said there’s a very fuzzy line between Aspie vs. quirky HG/PG kid.

    Good luck. (And no wonder I practically had to wrestle that hammer out of your hands last night.) 🙂

  12. Robin from Israel

    I wish I could just keep breathing for you…

    xoxox

  13. GinevraCat

    I also have a gifted child with SPD and “Aspie-like” behaviours, some thought-patterns etc. Everything got worse when we moved (3 cities, 5 years). SPD is like that. But you know from your experiences last year that there are teachers who can make a positive difference in your child’s life. Maybe just not at that school?

    I do not try to make the neurotypicals happy any more. I WILL not excuse my child to them. Our brains are so complex it’s a miracle anyone feels normals. Besides, I am tired of the nausea and stomach cramps every time I have to have a meeting with the school. I am tired of having to have so many meetings with the school. But I still wish there was a place that would take her for HER, not for who they wish / think she should be.

    *hugs*

  14. GinevraCat

    Oh, apparently I can’t even type “normal” :D.

  15. Susanne

    Oh Jen, I know how overwhelming it can seem. I do. I do not have the 2E burden, just the gifted/overexcitabilities/homeschool and I will tell you the bigest challenge with it is the responsibility.

    But it can be worth it in so many ways and it can be helpful is so.many.ways.

    If you need resources let me know.

  16. /ei

    As a single mom, homeschooling has never been an option that I could make feasible…except for that year I considered collecting unemployment and selling drugs…oh wait no that was a tv show. Anyway. A sounds a great deal like my D. Except D just started 7th grade and things got better (not perfect but better) in middle school. I don’t expect that means anything to you, except to say I’ve HEARD that for kids with executive functioning issues, they TEND to take big leaps in development during puberty. Maybe this is what I’m seeing? I don’t know.

    Cyber hugs. And I don’t know what the hell normal is…maybe it will come to me when life slows down 😛

  17. cursingmama

    What is normal? My kids certainly aren’t normal, and I’ll honestly tell you I don’t know a single kid who is. I know kids who appear normal – but once you get to know them, or their parents, the not normal starts to show.

    Whatever you decide I know that you will be making the best decision you can for your whole family – and know that you have a big community of parents willing to support you, if only via the web.

  18. Erica

    After a meeting like that I would have skipped the wine and gone straight for the tequila! It took 4 weeks for my DD8 to settle down and get into the school routine. Maybe the more less-normal they are, the longer it takes to adjust? Lucky for me, my children are only MG and 1e (DD8 is borderline SPD, so maybe she’s 1.5e!). I think (hope, pray) that we will all survive public school.

  19. Sharla

    I especially liked this from what you said, “I must learn to no longer accept normal myself, so to best help my son. I must do what is right for HIM, and to hell with society. Society wants normal, they ain’t gettin’ it with him, and I’m not going to make him suffer for society.”

    The journey you’re on (wanting his best and even considering homeschooling) is a Good one. Hard, but Good.

    From a homeschooling mom.

  20. My Kids Mom

    I live with a 7 yo “fuzzy line.” I’ve had the “A word” on the tip of my consciousness for years. Seven years. But we tiptoe close to the edge and never seem to get near enough to really risk falling. “…He’s social and makes eye contact and plays well with others, so whew.”

    I start to cry whenever I feel the edge getting near. Your post makes me want to quickly click away so I won’t have to read about it, but also to read every word twice. And cry while I read.

    And yet, what have I done all my adult life? Taught children with special needs. Twenty years ago, Aspies undiagnosed as Aspies. Severe autism. Everything in between. I became the specialist for all those special needs kids who not even the special ed. teachers wanted. My sister has two Aspies. But not me. He’s normal.

    But then, why am I crying while I read your post?

  21. Allie

    Normal? What the hell is that? Never heard of it in this house! I’m hearing homeschool too because of our situation (Autism, giftedness, SPD, and what’s looking suspiciously like Auditory Processing Disorder).

    I hope you find the answers and guidance you need. Hang in there.

  22. Terri

    The first thing that struck me about this post is that you are absolutely NOT alone. I coordinate the local Autism Spectrum Support Group (www.autismsupport-somd.org), and my main mission is to let people know exactly that: You are not alone, and you don’t have to go through it all alone. You’re the only person who is going through it WITH THIS CHILD, but others can walk right along side you and “get” it.

    The second thing that struck me is that having a dx of Asperger’s isn’t the end of the world. (Or if it is, it’s also the beginning of another one.) I’m not sure it matters what label our children have (gifted, AS, LD, ADHD, 2e) because there’s no cure — we address the symptoms. If your son has Asperger’s, then in getting the diagnosis, you’ll have identified the symptoms and can effectively address them.

    My son’s elementary experience was really, really bad. (We don’t talk about 2nd grade.) The gist is that school personal are kind and caring but generally ignorant about what it means to be a person with Asperger’s. What saved him was appropriate academic rigor, which he finally got in middle school. However, and this is a HUGE however, we had to give up getting his need for explicit teaching of social and executive functioning skills met in the academically rigorous setting. That’s not right, and it’s not legal, but that’s the way it was.

    Now we argue that without the explicit teaching of social and EF skills, my son will not get and keep a job, get and keep friends, or get and keep a family. BOTH sets of my son’s needs have to be met for him to be “college and career ready.” (Many of last year’s posts for me were about fighting this fight.)

    Though I used to be a teacher (ESL for adults), I would rather poke myself in the eye with a pointy stick than homeschool either of my children. (My daughter has her own issues.) It’s not for me, and it’s definitely not for him. (Authorities tend to frown on mothers’ turning said pointy sticks on their own children.) But if you can meet both sets of your son’s needs with a homeschooling program, rock on!

  23. Terri

    *personnel* (I read it three times and didn’t catch it — Grr!)

  24. Missy | The Literal Mom

    Oh, Jen. I’m thinking about you and sending good thoughts your way. A kid like A would most definitely go through a potentially major adjustment period after such a big move. Give him and you time to adjust and hang in there. You know what I’m so glad about? That he got YOU as his mom. Phew for him.

  25. Cheryl

    my son has Aspergers and we had great help with him until i moved to a differnt state and the schools realy do teach for one way of learning and not everybody learns that way

    some teachers can handle disruptions some teachers can handle needing to explain things differntly

    then some teachers let some kids slide thru and they fall behind some teachers get frustrated and don’t listen to the child when they are needing things

    I guess i try with each new teacher to help them have tools on what works with my child giving him time in another room when he just starts to shut down or when he is agitated having someone make sure he understands instructions

    other then those things my son does eye contact very well and is very social and very much a comic there is no normal box for aspergers either i always saw it more as a tool for communicating what his needs are then anything else and fifth grade was very hard

    just my thoughts

  26. Robin

    Breath. The school system is great for 75% of those kids who fit in the box. Then you have the rest who don’t fit the box. My son doesn’t fit in anyone’s box, so I have no idea what normal is. We learned long ago we can’t fix him. He is who he is. Yes, some things can be improved with different therapies, but you really can’t change someone’s temperament. And that’s exactly what it is – it’s how he is wired.

    Mine’s aspie with sensory issues and doesn’t do well in a classroom setting. Too much going on to really concentrate. We’ve been homeschooling since kindergarten and now starting 6th grade. He’s happy, thriving, and learning in an environment suited to him. He has issues and we deal with them as they come up.

    Homeschooling isn’t for everyone. I won’t lie. It’s hard but the rewards are great. If you want to discuss it, email me. I’ll be happy to answer any questions.

  27. Sarah

    cyber-hug and a cyber-margarita )-| (supposed to be a marg glass). I understand. At least M’s teachers and the special ed team all love him.

    Good luck and I hope you get answers!

  28. Siggi

    First of all, hugs. Second of all, here, have some chocolate. Third? Breathe, rinse, repeat!

    You’ll figure something out. In the meantime, think about how lucky your kid is to have parents and support staff who love him enough to do what it takes to understand him!

  29. Julie in KC

    Just writing to show you my support. You’ve been my online resource for when days are bad, so wanted to let you know we’re online for you as well. Seems like life with these kids is like a roller coaster with lots of ups and downs, questioning our parenting, questioning their schooling, questioning their diagnosis. I’m convinced that the “gifted kids are wired different” mantra is the truth. They may cross the line into other areas on occasion, but the bottom line is that darn wiring. Hang in there! After all, who says normal is better? I’m convinced these kids will do great things some day.

  30. Julie in KC

    After reading your post again, did a quick search of “gifted vs. Aspergers.” Thought you would the following on the sengifted.org website of interest. 🙂

    http://www.sengifted.org/articles_counseling/Amend_MisdiagnosisOfAspergersDisorder.shtml

  31. eldertree

    As I think Corin said…there is no “easy” with 2e kids. We homeschooled for awhile, and it was good. At least, until it stopped being good, and now we’re onto something else. Which isn’t great either, but is tolerable for her, for me, for everyone else in the family.
    Ultimately, and in talking with a lot of other 2e parents, that’s probably the best advice I can give: do what seems right, and always have a Plan B for when it stops. (I think I’m down to about my fifteenth Plan B in thirteen years.)

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