Doubt, always

I think that parenting has a certain element of doubt inherent in it no matter what; there’s always a niggling “Was this the right decision?” undertone to everything, because being tasked with the care and feeding of another human being is heavy business. So you live with doubt, from the very first cry, the very first decision. No matter what.

Having a kid with special needs has, for me, taken the “Is this right?” undertone and magnified it into a booming daily soundtrack. I feel less sure of my decisions, but more certain of their capacity to do damage if and when I get them wrong. Whether this is reality or just my perception, it doesn’t really even matter—it just feels like dangerous, uncharted waters. Always. Is THIS the decision that changes everything, for better or for worse? Will THIS be the thing I look back on, point at, and say “I should’ve done it differently?”

It’s maddening. I’m used to it, mostly. But it doesn’t go away.

So that’s the preface to this: I live with doubt, when it comes to Monkey. I know it, I know there’s not a lot of help for it, and I deal with it.

Furthermore: I’m not the sort of person who believes in One Right Answer or who generally feels that experts and/or celebrities know what’s right for my family.

All of that said, yesterday, I found myself rocked.

A dear friend of mine was in NYC, recently, hobnobbing at An Event. I sat in her living room yesterday and listened to her stories of things like running into Julianna Marguiles in the bathroom. And chatting with Spike Lee. Stuff like that.

“But what I want to tell you about is meeting Temple Grandin,” she said, scooting forward in her seat. Apparently it was clear that Temple was not so much into the smalltalk that this particular event was bustling with, and my friend took this as her opportunity to walk up, introduce herself, and say, “I would really like to talk to you about my friend’s son who has Asperger’s.”

According to my friend, there was instant engagement, and Temple asked her a series of questions. And then, with absolute certainty, the advice:

“Tell your friend she needs to take him out of school. If she doesn’t want to homeschool, she can hire a tutor. But tell her to get him out of there before it gets any worse.”

She also asked my friend to email her and let her know how Monkey is doing.

Now. That my friend thought to take this opportunity to put herself in front of Temple Grandin to ask for advice on my behalf, on my kid’s behalf, touches me deeply. That she was thinking of us is a testament to what a kind and generous friend she is, and I am incredibly grateful.

That Temple Grandin was willing to talk to a stranger about my kid, that she engaged and displayed real concern, I’m grateful for that, too. She didn’t have to. She’s an incredible human being and such an advocate for people on the spectrum, but she still didn’t have to care specifically about one kid she’s never met.

But the doubt. Not that I didn’t already worry, of course. Not that I hadn’t agonized over the decision to send Monkey to the middle school. Not that I think that just because Temple Grandin said so, it’s now the wrong decision. It’s just that creeping doubt. And here’s someone I admire, someone who likely understands my kid in ways I never will, even having never met him, who says no, don’t do it, it will be bad, don’t risk it.

I tell myself that everyone is different. That our decision to send him is predicated upon HIS desire to be with other kids. He wants to go. He is, perhaps, a more social creature than many on the spectrum. He has never been a loner, despite his difficulties. This is the right decision for him, for us. Because of what he wants and who he is, and we’ve fought for the supports he’ll need and if it all goes horribly wrong, we can still change plans, pull him and do something else.

But the doubt. Who in this situation gets advice from Temple Grandin and then disregards it? I do, apparently. I mean, probably. August is a long way off.

Maybe I’m the expert here, because I’m his mom. Or maybe she is, because she knows what it’s like to grow up autistic. The only problem is that there’s no definitive way to know which of us is right. It’s a gamble either way, and the chips I’m laying down are my kid.

So, yeah. Doubts. Always. Especially now.

103 Responses to “Doubt, always”

  1. 1
    Randi June 1, 2011 at 11:26 am #

    I don’t have any special needs children – but we have gone through some TRIALS (yes, capitalized) and I doubt myself constantly. I think doubts are a normal part of being a parent, especially of being a parent who actually cares and wants the best for their children. And I think going off of their cues, and off of what you know about your child, because no one will know your child better than you, is essential.

  2. 2
    Sara June 1, 2011 at 11:26 am #

    I know all about the doubt. I homeschool (and have to say I’m with Temple on this one), but I do worry about whether I made the right decision. I will say this- homeschooling does not mean being a loner. There are lots of opportunities for being with people. It can be nice not having to struggle with the constant presence of others though. A better balance and a chance to be less constantly overwhelmed with stimulus and input.

    Good luck, Mir!

    xoxo
    sara

  3. 3
    Debbi June 1, 2011 at 11:27 am #

    Always follow your feelings…and right now it seems to be pointing to letting him give it a try. But like you said, you can always change your mind later and know that at least you did try it. You are a great mom, you will do the right thing. hugs!!!

  4. 4
    Navhelowife June 1, 2011 at 11:27 am #

    I don’t know the right decision for you, but I will tell you that I’m thinking of you and your family. And that you can reverse either decision – really.
    You love your kids, and even if one choice doesn’t turn out the way you expect, you and your family will still have each other.
    Still, I know its hard, and I wish I had some magical words of advice for you. If you choose to homeschool, please let me know – I have some peeps who might have good resources for you.

  5. 5
    ChrisinNY June 1, 2011 at 11:28 am #

    There, there, there. This is one of those times that sympathy is about all I can offer.

  6. 6
    Suebob June 1, 2011 at 11:28 am #

    Temple Grandin is not the Queen of All Things, but you are the head of your family. You’re also one of the smartest people around. I trust that you’ll do what you think is best, and when it stops being best, you’ll make adjustments.

  7. 7
    Jenn June 1, 2011 at 11:31 am #

    You ARE the expert. Maybe you don’t know everything about every aspect of every person on the spectrum but you are an expert on Monkey and that’s what really counts here. You know what’s in his heart and ultimately as his Mom, you have to at least give him the chance to try what he wants to do. Keep being brave.

  8. 8
    Aimee June 1, 2011 at 11:32 am #

    Temple Grandin, as great an advocate as she is, does not know Monkey. You do. He wants to go to middle school, so why not give it a try? If it turn out that home schooling would be preferable, you can always do that.

  9. 9
    Ellen G June 1, 2011 at 11:32 am #

    Now you are making me go grrrr that I missed my opportunity to meet her at a “equally special and probably the same” event.

    It’s one comment – take it as it as. You’re right that it was very cool of your friend to ask about your family during her Temple time. Was a signed book involved?

  10. 10
    Ellen June 1, 2011 at 11:32 am #

    At my school, we are getting ready to say goodbye to a girl who came in 6th grade totally lost. I am not saying we’d do a great job with Monkey, but as this girl prepares to leave us, she has grown, and has become a valuable asset to all of us and her peers. She will help induct the new members of the National Junior Honor Society tomorrow. It is possible to have success in a public, diverse middle school. Good luck.

  11. 11
    Nelson's Mama June 1, 2011 at 11:33 am #

    I rarely comment on Monkey because there is very little that I can offer you in that arena.

    Today, I am taking a second to say that is some powerful advice that will take a while to ponder and gnaw over.

  12. 12
    Sheila June 1, 2011 at 11:35 am #

    Wow.

    But! You’re right: you do know your kid- she does not. Monkey wants to try it. Plus also, you have a plan in place, and another plan in case things don’t go well. (I can’t imagine what it was like to be in middle school as Temple Grandin, at a time when none of these kids were diagnosed, let alone understood.)

    You have a plan. You know your kid. I think you’re right to try, despite the doubt. (How’s that for an opinion from a well-meaning stranger?)

    Still, wow.

  13. 13
    barbara June 1, 2011 at 11:36 am #

    She know a lot (A LOT), but she doesn’t know you or Monkey or his peers or the school or the educators. And there have been some serious changes in public perception and in how many schools approach the needs of spectrum kids since she was a kid. So, you have more data points than she does here. You need to do what you feel is best.

  14. 14
    Lily June 1, 2011 at 11:37 am #

    If, after receiving advice from Temple Grandin specifically about your son, you STILL feel that sending him to school is the way to go then I think you have to at least try it. Sometimes I find that I make my best decisions when someone gives me advise and, regardless of the advice, I go with my gut reaction to it. Sometimes hearing the words come out of another person’s mouth puts it in better perspective. Good luck!

  15. 15
    Kyre June 1, 2011 at 11:37 am #

    Follow your gut. Really. Follow it. It is right. Every time. Listen to the gnawing and then do the thing that makes the gnawing subside.

    Intuition is not a hunch. It’s a sense. Like seeing. Or hearing. Do what it tells you to do, mama…whatever that is.

    sounds so easy….meh. Easy for me to say.

    Lots of love!

  16. 16
    Kim June 1, 2011 at 11:38 am #

    No matter what Monkey’s issues are, you would always have doubts. I think it’s absolutely important to seek out guidance and advice, but in the end you have to make the decision you feel is right. The biggest take away I think would be that no decision is final. I doubt that Monkey would be harmed beyond reason if you decide later that middle school is not working. This raising kids thing is a long haul and I doubt if any one decision makes or breaks their success. It’s the multitude of decisions along the way and stopping and reassessing as is reasonable. Best of luck. In the end you and your family know what’s right for you.
    Take care.

  17. 17
    Lucinda June 1, 2011 at 11:38 am #

    First, Wow! Temple Grandin said email her? Wow! Second, yes she knows the spectrum but she doesn’t know Monkey. You do. So while doubt is understandable, trust your knowledge of your family and your child.

    Third, there are very few decisions that are final and set in stone. You can always change your mind. And rarely does one decision damage a child for life in an irreparable way. Yes, those decisions exist but you aren’t that kind of parent and kids are incredibly resilient. It’s generally a series of events, a series of decisions that cause real trouble. But based on how you constantly re-evaluate things, I can’t imagine it ever getting to that point.

    Finally, do you remember your OOC post about overcoming adversity and it making us stronger? That applies to your kids too. Remember that. You will never let it get to the point where they will be crushed. But a little adversity will make them stronger. Think of how amazing they already are.

    Yes, doubt is natural and expected but please don’t let it bury you. You are a bright shining light in more ways than I think you truly know. (((HUGS)))

  18. 18
    Otto June 1, 2011 at 11:39 am #

    Autism is called a “spectrum” for a reason, pal – there are so many variables, so many nuances that every single person on the spectrum has their own needs. Even when you narrow it down to just those with Aspergers, it’s still a spectrum. Look at all the people we now know who are Aspies – every one of them is unique, every one of them has a different set of needs and every one of them has a different way of dealing with their world.

    One of the things we know about all of them is they believe there is One True Way To Do Everything. What they don’t understand is that there can be multiple ways of doing things – and I think what our friend witnessed, first hand, is that even those with Aspergers don’t fully understand what having Aspergers means. They don’t understand that the spectrum means there are lots of ways it manifests itself.

    You’re making the right choice for our particular Aspie.

    -otto

  19. 19
    Momsy June 1, 2011 at 11:44 am #

    Gosh, how difficult. Thinking of you and your family.

  20. 20
    Frank June 1, 2011 at 11:46 am #

    It really seems to me that “Spectrum” disorders are about as far from cut and dry as they can be. One can be an expert (Anyone, not just, say, you, or Temple Grandin) but still not know all the answers…. be well versed in the subject but still not predict 6 months down the road. It may be oversimplification, but it seems to me like a weather forecaster (i know a bit about it, having gone to school for it). You have years of experience… past documented history… loads of data…. big supercomputers…. Yet you can still be not completely correct about the forecast 6 hours from now.
    My gut feeling is… to trust your gut feeling in the absence of incontrovertible evidence. Trust it until you have reason not to (and my most humble of opinions is… you should trust your gut- your personal experience. It has served you well so far…)

  21. 21
    Midj June 1, 2011 at 11:48 am #

    Sending Love. And, Otto, best dad EVAH! Oh, and a pretty dang good husband, too, it seems… :-) Holding your hand as you continue the journey,

    ~~M~~

  22. 22
    Christina June 1, 2011 at 11:49 am #

    I can tell you this, from having heard Temple Grandin speak for a good hour or more: she’s wonderful, she’s a genius, she knows more than I could ever hope to know about autism, she lives it, etc. But, she did also seem to be a big supporter of home schooling, or at least not subjecting our special kids to public education if they have any sort of trouble with it. In the long run, you know your child best and have to make your decisions based on that, not on what works for others or what anyone else, even a clear expert on the subject, thinks. As a special needs parent that is one of the first things I learned – do what is best for your child, and forget what anyone else thinks because only you can truly know what is best.
    Be strong, you are an amazing Mom!

  23. 23
    Liz June 1, 2011 at 11:50 am #

    I love Otto.

  24. 24
    Amy June 1, 2011 at 11:52 am #

    I second Suebob. Also, just because TG has autism doesn’t make her an expert on how to treat autism. You know Monkey best. Don’t let other people make you doubt yourself. You are the bomb dot com.

  25. 25
    Lisa June 1, 2011 at 11:54 am #

    To echo what everyone one else said – only you know all the details. Your friend may have described Monkey differently than you would, your friend may have brought her own bias, Temple may have her own bias. You, Monkey and Otto need to make the decision – it is not a right or wrong. Nothing like this ever is – each choice will lead to different lessons and different challenges. It won’t be right/wrong, just different.

  26. 26
    Jodie June 1, 2011 at 11:58 am #

    I don’t think you would be on the right path at all if you didn’t have doubts frankly. On one hand I think you are right, this is heavy stuff that has serious implications. And on the other I think you are right…you can completely be flexible. The truth is both you are Temple Grandin are experts in your own way. The difference here is she is giving this advice based on her own experience. Who knows how long she was allowed to struggle before her parents modified their course? Or what supports/modifications were in place for her. Given her age, I doubt anyone had access to the possibilities that Monkey has.

    Having worked with tons of the kids on the spectrum (by the way, have you done any research into Lindamood-Bell programs? If you are at all interested I can tell you more. And I don’t work for them anymore, so no skin in this game :)), I’d say 3/4 of them did fine in middle school. Not a bed of roses by any stretch, but with a good team and the right accommodations, they enjoyed themselves…made friends, found activities and went on to high school.

    No matter what you decide in August, it would shock me if you weren’t flexible enough to change it on a dime if it wasn’t right for Monkey and that alone is why it will be ok.

  27. 27
    JP June 1, 2011 at 11:59 am #

    Ditto Liz above – Otto you rock!

    Mir, everyone has those doubts – even those of us with neurotypical kids. How often have we all wished that kids came with a user handbook? Trust your gut and see what happens.

  28. 28
    MomQueenBee June 1, 2011 at 12:00 pm #

    Aren’t you glad you and Monkey have Otto on your team? He is right, you know.

  29. 29
    Anonymous June 1, 2011 at 12:05 pm #

    Oh my heart. My husband was just diagnosed with AS last week. He is 35. Talk about a diagnosis that rocks your world And my two brilliantly gifted stepdaughters? Being evaluated as I type this. It is a situation you have to live to understand. I cannot empathize with you in this enough, it is so hard. Feel free to email me, I do not have much knowledge yet but sympathy and compassion, I have by the truckload. There is no one size fits all here, unfortunately. But at least you are armed with information that a generation ago we did not have. My poor mother in law did not know anything when she was raising my husband, and I promise, despite it all, he turned out fine. :)

  30. 30
    jen June 1, 2011 at 12:15 pm #

    You are doing what you think is right and most of all, you are giving Monkey the chance to try. Nothing is set in stone and as long as Monkey knows that you are listening to his needs, that is the best you can do. I think it would be worse for Monkey to want so badly to go to middle school, only to have that snatched away before given the opportunity to try. If things aren’t working out, you can always make a change.

    In my house, we have the “rule” that it’s the trying that counts. You don’t have to like or succeed or be good at things, but you get points for trying. If traditional middle school doesn’t work out, there are other possibilities and opportunities. You just keep trying until you find the right fit.

  31. 31
    Tenessa June 1, 2011 at 12:15 pm #

    I’ve been telling my kids how many days are left of school. Probably because I’m so ready for this year to be over I can barely stand myself, but also because they will not be going back. They know this, and I’ve worked to prepare them. I don’t think my rising first grader really understands, but my Aspie, who is going into the fourth grade sure does.

    This morning, as I was going through the litany of “things we talk about on the way to school”, I, at last came to the time when we discuss the rest of the school year. Chi said, “Mom, I’m a little bit sad,” here he holds up is thumb and forefinger about an inch and a half apart, “about this being the last of me going to school.” I’m a little taken aback because school is HARD for him and I don’t mean academically. So I say, “Really, a little sad?” He says, clarifying, “Yeah, I’m really gonna miss my teacher.” Of course he wouldn’t have this wonderful woman next year, but still. It’s really good to know that he knows a good thing when he sees one. I explain to him how the change of teachers works (again, after all, moving up grades isn’t new, and yet still seems to catch him by surprise) and that he won’t even be in the same hallway as his current teacher. He shrugs and says, “I’m only a little sad, Mom, but I’m a lot happy.”

    Monkey wants to go to school. I think (for whatever that is worth) that giving him that opportunity matters. As The Mom, you can decide as you get into it, if it is going to be too hard and maybe damaging and then you can make that executive decision because as The MOM you have that power. You have that right.

  32. 32
    Beth June 1, 2011 at 12:16 pm #

    I’m in the same boat. My ex is ferociously opposed to homeschooling, so I’m trying very hard to make middle school work. After a year, I can say my son is surviving. Not thriving, but also able to take pride in making things work, just like everyone else.

    I also believe that there is no one way to do things, and that you don’t have to do things the best way for your kids to make it. So even if this ends up not being the best possible thing to have done, it’s a thing that we can make work, and he’ll have different rewards and losses than if we had magically known the “best way.” But he’s a wonderful kid, and I don’t believe my mistakes are big enough to mess that up. You have more freedom, so I bet you and Monkey find a way that works too.

  33. 33
    Kelly H. June 1, 2011 at 12:23 pm #

    What Otto said. (The guy really knows how to hit the nail on the head, doesn’t he?)

    I think what stands out to me is that you are considering what Monkey wants. He wants to go to middle school. How will he feel if you say no to middle school because of advice from someone that does not know him (however well-intentioned)?

    Doubt comes with the parenting territory…

  34. 34
    bob June 1, 2011 at 12:29 pm #

    oh my. My first instinct is that it doesn’t matter what kind of credentials Ms. Grandin has, she does not know your son, doesn’t know his history, hasn’t even met him. YOU are the expert on Monkey. That doesn’t mean that Ms. Grandin’s opinion is of no value, it’s just that it should be considered in light of what you know of your son.

    You are the first best person to make this decision. Follow your heart.

    BTW, it has been suggested by a medical professional that Zack could be an aspie.

  35. 35
    Anna June 1, 2011 at 12:31 pm #

    Honestly, I find that specialists who want to evaluate my kid without FULL information are not worth their salt. A GOOD specialist will say “I’m sorry, without more information, I really shouldn’t speculate.” And if you’re still dwelling on it, get his therapist’s opinion.

    Good homeschoolers will also say that it’s not the only solution, and that it is a decision that should be re-evaluated often. There’s a good shot that it will work for Monkey, but there’s also a good shot that it won’t.

  36. 36
    Rachel June 1, 2011 at 12:36 pm #

    You are an amazing mother. You own your doubt, grapple with it, and focus on your love for your children… you are inspirational and definitely an expert. And, you know all too well that there are no magic answers. You have to make the best decision you can at the time you have to make it and then love your kids (and yourself) through whatever follows. Thank you for sharing.

  37. 37
    Walkingborder (Karen) June 1, 2011 at 12:39 pm #

    Ok, I’ll open by saying my kids (of the two born thus far) aren’t autistic so I can’t directly relate, mostly. BUT my husband is autistic (functional enough to run a household and raise kids, not so much to be productive enough in the work force for it to be worth him working out of home) so I do have an idea, through his stories, of what it can be like at Monkey’s age.

    Then there are my stories as someone who has mental health issues, but no learning challenges…

    Middle school is rough. It’s a dog eat dog world out there and middle school is the roughest version of that there is. Kids are cruel. Kids getting to the age of just now hitting puberty are some of the most vicious creatures on this planet. My sixth grade year I had a pack of girls (not to be confused with a pack of hyenas) literally physically abusing me as I walked through the halls, and I had nothing “obviously” different about me other than I was perhaps a little more quiet, and obviously not popular (by a long shot). My husband’s time in middle school… yeah… He doesn’t talk much about it but it made my time look like heaven.

    When my oldest was in kindergarten and we were talking to his teacher one conference, we were discussing his struggles in school where as the “white boy” he was the minority. And picked on (bullied really) because of it. Blah blah blah. It didn’t look to be changing anytime soon. Blah blah blah. We brought up the possibility of home schooling him at some point. (Not until at least after 3rd grade, those first few years are the learning foundation for the rest of his life, everything builds from that.) She was openly against the idea. Of course. Then we mentioned we were mostly looking into home schooling the middle school years and suddenly she was fully on our side and supportive. Yeah.

    Listen, only you and Monkey know what’s best for Monkey and even then you can only guess. And if you try middle school and it doesn’t work, you can pull him out. The rest of the world can only give advice and stories. But the bottom line is, it’s not our life, it’s Monkey’s. And if Monkey wants to go to school, well, that’s his right. As long as he also knows momma bear will pull him out so fast heads will spin if shit goes bad.

    It’s his life. He’s got to live it.

  38. 38
    Debbie June 1, 2011 at 12:42 pm #

    You will ALWAYS have doubts. That’s part of parenting, whether you have a special needs child or not. And for the record, I have a friend with a child who has Aspergers. He is in regular school and doing ok from what I know. It’s not necessarily a bad thing. If you would like, I can put you in touch with her via Facebook. Her son is on there as well.

  39. 39
    bj June 1, 2011 at 12:46 pm #

    I’ve read through the comments, and since i think I might have something different to say, I think I’ll say it. I’ve read Grandin’s books, and my interpretation of her view of the world is the following (mind you, it’s just me): Grandin’s positive interactions with others come through a common interest, not through the casual interactions that we often think of as social interaction. That is, she does not enjoy talking about the weather, the venue, or making idle chit chat. Doing so isn’t a social experience. Talking about her work, about her interests and opinions in autism do. She gets her positive experiences with people through those interactions.

    Hence, her general suggestion that homeschooling is an appropriate option — because it allows an individual to limit social interactions around activities one is actually interested in. I know a child like that, who really wants to be with people and talk to them, but only if they’ll talk about what he wants to talk about. Adults generally accommodate him, but children are less willing, and his interactions with children fail, when they won’t. For him, home schooling, taking him out of the group where children are thrown together by chance and not interest, and then having him have social interactions in a group he is interested in might be a good solution. I think that Grandin is similar, and that’s what has worked for her, too. Now, the price is that the child might not learn to interact in a group that is uninteresting to him (as Grandin hasn’t — your friends story leads with that concept — that Grandin didn’t want to socialize in the venue). Is this a price one is willing to pay? Is it a necessary condition for the child’s happiness?

    Answers to those questions depend on your family and your child. Grandin isn’t telling you what’s good for Monkey; she’s telling you what worked for her (and, in the short description she heard, assuming that Monkey is like her). There’s no question that you’re the right person to answer those questions and make those decisions, though thinking about what others have to say just shows how seriously you consider your choices.

  40. 40
    Jill W. June 1, 2011 at 12:51 pm #

    That Otto’s a keeper.

    And I think you should trust your gut, too.

  41. 41
    meghann June 1, 2011 at 12:57 pm #

    As an Aspie homeschooling an Aspie son and an autistic one, I say go for it with middle school. There is nothing wrong with trying. He may be fine. If not, you can always just pull him out, but you would drive yourself crazy with the what-ifs later if you didn’t at least try.

  42. 42
    MM June 1, 2011 at 1:01 pm #

    How incredibly thoughtful of your friend! Exactly the type of person you need in your corner as you struggle with these things.

    I think that the downfall of taking advice from people who have “been there” and had trying experiences is that they have a tendency to try to correct/erase the hurt they experienced by glorifying the opposite. There will be struggles either way.

    Your Monkey is advocating for himself, wanting to take on a challenge, asking to make decisions about his own future. He’ll eventually have to do those things mostly on his own; maybe this is a good time to show him you have faith in him, knowing that there’s a giant safety net below.

    Good luck and have a wonderful summer!

  43. 43
    Jen June 1, 2011 at 1:05 pm #

    I’m in the homeschooling crowd here, as it has worked wonders with my spectrum son. BUT, you are engaged, you are vigilant, and you will be involved whatever happens. And THAT is the right decision. It is very easy to pull him out if things don’t go well. Hugs!

  44. 44
    Jamie June 1, 2011 at 1:13 pm #

    I did not know who Temple Grandin was as I read this, but wow, after looking up who she is, I think it’s great to receive advice from her. BUT, (there’s always a BUT, isn’t there?), you have to feel secure in the choices that you make at the time you make them. You have made this choice after huge amounts of thought, consideration, research,etc., and it’s a good choice. If it doesn’t work out, you’re dynamic and flexible enough to make an immediate change. This isn’t an irreversible decision, so it’s okay to feel only 99% sure of it, allowing room for a bit of doubt that you hope is extinguished by Monkey’s great adaptation to middle school. We’ve all got our fingers crossed and, more importantly, we’ve got your back no matter what happens; your readers will always be here to support you.

  45. 45
    RuthWells June 1, 2011 at 1:18 pm #

    Boy, that’s a tough one. My immediate reaction was, what does Monkey want to do? And then I finished reading. So I think you’ve made the right choice for your and Monkey’s circumstances, but also believe that you’ll know it if you’ve made a mistake and decide to make a change.

    Parenting is so hard.

    Has Monkey’s father weighed in on this decision at all? Not that he’s necessarily in the best place to judge, but I’d be interested to know what he thinks.

  46. 46
    Rebecca June 1, 2011 at 1:22 pm #

    You are the expert on your child. She may be an expert on Asperger’s, but you are the expert on Monkey. And like you said, his path is not set in stone and the direction can be changed, if need be.

    Okay, I just typed out this long rambling bit about how all kids have challenges and blahdiddy blahdiddy blah, but you know all that stuff. You’ve thought it thru, you’ve talked to administration, teachers, support staff, your husband, Monkey, and anyone else who needs to have input. You have come to the decision you feel is best for your special son. Keep your options in your back pocket and pull them out if you need them. From what I’ve read, Monkey surprises you quite often, so you never know how it’s really going to go.

    Hang in there! You’re doing the best you can for him, and you really are the best mom he could possibly have! ((big hugs))

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    Lauren June 1, 2011 at 1:24 pm #

    From what I hear, Temple Grandin responds to every single email sent to her by kids on the spectrum (and, I’d imagine, kids NOT on the spectrum, but she probably gets more emails from kids in the former category) — I have a HUGE amount of respect for that.

    I totally have thoughts about middle school/homeschooling, etc. — but to share those thoughts would be projecting MY own experience on to a situation that only YOU understand fully. As many others say, you have to trust that you know this situation best and that your instincts are the ones most attuned with the situation as a whole, and with Monkey in particular. You’re trusting yourself and you’re trusting him, and that’s all you can do.

    Unrelated, but I’ve been curious about this — is Chickie going to be able to make it to nerd camp this summer, with everything going on with her skin?

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    Lynn in Mass June 1, 2011 at 1:43 pm #

    I can relate to a degree. I have had several doubts along the way and my children are younger than yours. I don’t have an Aspie but, I do have two kids with special needs when it comes to learning. I had my IEP meeting recently and at the time sounded real positive for my son. A couple days later I was talking to another mother with children in the same school and she was telling me about all of the “cut backs” the school will be facing when it comes to Special Ed. I already had apprehension about my son spending more time in the classroom next year and less time pulled out but, now I am left wondering if they are keeping him in the classroom due to the “cut backs”.
    You and Otto have to make the choice the two of you feel would best fit Monkey. From what I have read in your blogs it sounds like Monkey wants to be around other children and by taking him out of school that opportunity to make more friends (as he told his therapist) is shortened.

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    karen June 1, 2011 at 1:48 pm #

    I’m thinking this is a woman who has never met Monkey, never seen where he is on the spectrum, doesn’t know who he is as a person, and the “specturm” for autism… is huge. You have done much research… every step of the way… as it pertains to your son. I am very surprised that a woman of her knowledge (I know who she is and yes, she’s admirable and has some experience. As do you.) would make such a bold statement without really knowing the child at all. I understand it was all with good intentions. But I wouldn’t doubt the thorough job you do as Monkey’s advocate every single day. If a time comes when it’s absolutely not working for him, you will know it. Right now, he is benefitting from socialization with his peers… there are benefits, or you would have yanked him by now. One foot in front of the other, as you have done.

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    Katie in MA June 1, 2011 at 1:50 pm #

    I had a perfectly lovely comment all thought out and then I made the mistake of stopping to read what Otto said first. Damn if I can remember a single word now because PERFECT. His comment is perfect.

    You might not have grown up an Aspie, and maybe you don’t have Ms. Grandin’s wealth of knowledge or experience, but neither does she have your wealth of experience and knowledge about Monkey or your mama’s love.

    Trust yourself on this one, chica.

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    liz June 1, 2011 at 2:01 pm #

    I like that you are listening to Monkey, and taking his desire to go to the middle school into account.

    I think that trumps what Temple Grandin says, because while she knows what would be best for HER, she doesn’t know what Monkey thinks is best for Monkey.

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    Laura June 1, 2011 at 2:26 pm #

    You are an amazing mother and you know what is best. I think you should trust your gut. Also, you will know more as the situation develops and you can change your strategy accordingly.

    You know, middle school is rough for ALL kids. I think they start to become kind humans again around high school age. So please don’t lose heart if middle school turns out to be rough. It is not the standard by which you should measure the future.

    Kids have come a long way in this day and age from where we were when I was young. I still think they are a bit less kind during the middle school portion of their lives, but I think kids today are heads and tails above what they were in my generation. I say this because my son with Down Syndrome was elected homecoming king of his high school, was voted friendliest for the senior hall of fame in the yearbook, and a list of awards and accomplishments that goes on like you simply wouldn’t believe. Kids today get it. Kids today have been raised in a culture where kiddos with special needs are treated with respect. More so than in any other time in history.

    In my son’s experience, we are in a very racially diverse school (we are also supposedly in the “poor” and “rough” part of the otherwise wealthy school district…whatever) so I think these kids are used to differences and DS is just one more difference that’s no big deal. I should clarify, this attitude of acceptance extends to all the kids with special needs in our school; not just DS.

    The highschoolers that I have witnessed these past four years are some of the finest young people I have ever had the pleasure of knowing. So please know, there is hope. I believe things get better as the kids get older. Middleschool is a hard time, but ultimately I believe that this generation is better in their understanding of folks who are different. I also believe that our society as a whole is getting better. I don’t know when in the hell I turned into Pollyanna, but it is what it is ;-)

    I think you should follow your instincts and do what you feel is right. Maybe if middle school stinks he can rejoin his class for high school? Just a thought.

    I think you are the rock star of mothers. I also believe whatever decision you make it will be the right one.

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    Sarahd June 1, 2011 at 2:32 pm #

    Temple may be absolutely, 100% correct about this. The problem is the “you’ll never know unless you try” thing. If you don’t at least try to send him, you’ll never know how it would have gone. If you do send him, you’ll find out eventually that she was right and then you can pull him out. Maybe it will seem like less of a “failure” situation to both of you if you decide that he will go until Christmas and then you’ll reassess then and decide what would be best moving forward. Then you are making a choice at that point, rather than saying “well we tried and failed so I guess we’ll move on to the back-up plan”. Is this all assvice? Probably because my boys aren’t special needs. But, hey, moms can use all the assvice they can get sometimes, right?

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    elz June 1, 2011 at 2:32 pm #

    We all have doubts when making parenting decisions. I have plenty of them, and neither of my children have any special needs- beyond attention for the DRAMA. That said, when the doubt lingers and nags, then I think you have to trust your gut. Will things be better for Monkey next year? In some ways, we know that answer will be ‘yes’ regardless since he will not have a head full of infectious snot. In some ways, it may be worse. There’s simply no way of knowing. We do the best with what we know. Monkey is no different, he’ll do the best he can with the tools he has. Good luck helping him find the tools he needs.

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    bonuela June 1, 2011 at 2:39 pm #

    you know your monkey better than a stranger. even an expert stranger. also, in a general sense, as i don’t know monkey either, avoiding something hard is not always the best solution. seeing as some of his challenges are social ones, isolating him seems counter intuitive. also, while it is NOT your responsibility to raise other people’s children, how will they learn to deal with people different from them as adults if they don’t get to mingle with them as kids?

    if it feels right for your family, then it is.

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    gaylin June 1, 2011 at 2:47 pm #

    From reading what you write I think you have a very good handle on how you are dealing with Monkey and that him going to Middle School will be a one day at a time process and you know him well enough to decide what to do with each situation that comes up.

    Temple Grandin is pretty amazing but she is just one person on the spectrum and without her meeting and spending time with Monkey, she really can’t say what is right for him. That is Monkey’s parents ‘job’ and you are doing wonderful, doubts and all.

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    My Kids Mom June 1, 2011 at 3:01 pm #

    Why assume there is one right decision for a child? I’d say there are many options that will all result in a well rounded and happy adult. We make our choices among those options, and we take into consideration many other opinions, family members, incomes and schedules. I’d say that assessing each year individually and making a decision for the following year is as good a method as any. You’d know if your choice was really not working.

    Too bad we can’t try different methods on the same child without changing other variables. The dang kids just keep changing and maturing. They’re hard on the scientific method!

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    Andrea June 1, 2011 at 3:05 pm #

    Doubts are OK…I think healthy even…helps you to confirm you are really considering all the options. Only you and your family can see the promise of a new year ahead for Monkey and can evaluate the situation as the new school year progresses for him. So long as you keep your eyes on what decisions YOU are making for YOUR child, you’ll not go wrong.

    My very best wish for your Monkey and the year ahead and my hope that you find peace with the decisions you make.

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    Heather June 1, 2011 at 3:05 pm #

    I think you need to follow your gut, Mir. I agree with the others who have said that Monkey is his own person and someone who does not know him cannot say what is best for him.

    It is true that for some kids, regular school is just not the right choice, and much of that can be due to the school itself!

    My mom is a middle school principal, grades 5-8 and she is retiring this year. The district is, as a whole, so sad that she is leaving. She is truly an advocate for each and every one of her students and she will be impossible to replace wholly. She has several spectrum students, on extreme ends of that spectrum and she has done anything and everything she can to make sure those children have the best experience FOR THEM. Each one is different.

    I just hope that there is someone in that school who will work as hard for him as my mom does for her kids. If he finds that one person, he will be just fine.

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    burghbaby June 1, 2011 at 3:13 pm #

    Question: If someone who was academically gifted in the same way that Chickie is offered comparable advice, would it give you pause as this has?

    You’re doing a good job, Mir.

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    EmmaC June 1, 2011 at 3:32 pm #

    I’m just thinking of you right now and giving you a big virtual hug. There’s no way to know the right answer, so you just have to do the best you can. And really, you ARE the expert on your own kid. So yeah, virtual hugs to you, Mir.

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    The Mommy Therapy June 1, 2011 at 4:17 pm #

    Oh boy. It is so easy to doubt what we do in general, I am sure that is only complicated by having a child for which you have potentially more choices to make.

    I recently read a blog by Kelle Hampton on Enjoying the Small Things, who has a child born with Down Syndrome about allowing herself to be the guide. There is so much information, so many opinions, so many people (even “experts”) ready to tell her exactly what to do….but sometimes that just doesn’t feel like the direction she should go in so she decides to trust herself. The whole post was simply for all Moms to trust that they already have what they really need to do the right for their children.

    I think you have to trust yourself. There is more than a little something to be said for the fact that you are his mother, that’s huge. No one will ever know him like you do. As long as it isn’t making you blind, which from reading your blog I really don’t think that’s the case, you need to trust you.

    You got this. You make the best decision you can, move forward from there, and adjust as needed.

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    Little Bird June 1, 2011 at 4:17 pm #

    Temple is an amazing person, no doubt. And her experience with school was rough. I can understand why she would want to spare someone else the agonies she went through. If you do decide to take Monkey out of traditional school, there are other options. There are also organizations that give kids a chance to socialize that aren’t so much school/education related.
    The fact that I made it to college before I had a breakdown was amazing. But we didn’t know what the problem was before the the breakdown. If I had had the type of support that you and Otto and the para-pros provide Monkey with, the breakdown might have never happened.
    However you decide to proceed will very likely be the right choice FOR YOUR FAMILY.

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    J from Ireland June 1, 2011 at 5:21 pm #

    Oh my God, I just watched the Temple Grandin movie today and sobbed my heart out. It really hits us parents with special needs kids.That old fella Doubt and his cousin guilt, they love to visit us, huh?
    You are the expert regarding Monkey. Each time I have to make a decision about my son and have to go against the professionals, my default answer is “I know him best”
    You are in my thoughts Mir.

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    elza murphy June 1, 2011 at 5:46 pm #

    Yeah. You are 100% right about that doubt, for all parents. I can only imagine how it is magnified for you in general, and then with this specific advice, from this specific person. I don’t know I would even begin to process that. All I can say is that I do know you are incredibly thoughtful about your children and their needs, that you have worked hard and will continue to work hard to make the best choices you can. And that you are a great mom.

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    Liza June 1, 2011 at 5:53 pm #

    I agree 100% with Otto, and generally with everyone else.

    What I love about Otto’s comment is the reminder that thinking, “THIS is the ONE, CORRECT, way” is a symptom of what Temple Grandin and Monkey have in common, as distinct from being factually accurate.

    Keep on being the fabulous mother you are. One decision at a time.

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    amy June 1, 2011 at 5:58 pm #

    Just my two cents here, you don’t have to take any of it to heart, but as far as the social aspect, I’m sure there are homeschooling groups you can connect with if you find that homeschooling is a better option for you. I know in my community they band together to do outtings and social gatherings (trips to local establishments, etc.), share ideas/lesson plans etc. and therefore it’s not compulsory to be involved, but it’s there if you want to.

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    Chris M. June 1, 2011 at 7:39 pm #

    I don’t comment much, Mir, but I’m always reading and hoping you bring great news one after another about your kids.

    This comment resonated a lot with me:

    <>

    I think it’s great that you have some time to think through your options, and I’d add these thoughts for you to ponder about as well:

    1. Maybe Monkey feels he wants to be at school, when what he really wants is an opportunity to connect with friends.

    2. Maybe these opportunities would be much more successful if planned in a manner that doesn’t overwhelm him with stimulus and input as mentioned in the comment I quoted.

    3. (Easier said than done, I know!) Maybe if Monkey can see in your eyes and attitude that it’s not a failure on his part not to go to school, and that it won’t prevent him from interacting socially with others, he will be happy with this alternative. (This is me being very honest; from the way you write, I can see a child interpreting your struggle with the idea of homeschooling as an indication that this is not as good an option as doing as everybody else and going to school everyday).

    Best of luck with any decision you make! It’s very hard and I’m sure anyone on your place would be second guessing themselves.

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    Chris M. June 1, 2011 at 7:43 pm #

    Ugh! the quote disappeared. here it goes again:

    “I will say this- homeschooling does not mean being a loner. There are lots of opportunities for being with people. It can be nice not having to struggle with the constant presence of others though. A better balance and a chance to be less constantly overwhelmed with stimulus and input.”

    I’d also add, if are convinced in your heart that going to school is what Monkey truly wants, then I’d not take this opportunity from him.

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    Becca June 1, 2011 at 7:48 pm #

    It’s not mentioned very often that people on the spectrum can be introverted or extroverted, just like neurotypicals. I’m introverted myself, but I’ve always thought that it must be so challenging to desire the contact with people and not know how to achieve it. There is no one right answer, even for those of us who desperately want things to be black and white.

    And as an aside, I’ve been thinking about your adventures in acquiring a therapist. I just moved to New York City, and I’m so frustrated that I cannot seem to find anyone who works with people the spectrum and the one I did find who seems awesome doesn’t take insurance and costs $250 an hour.

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    Michele June 1, 2011 at 7:52 pm #

    We’ve discussed our kids before, so you know I know whereof I speak. Yours is not the route we’re taking, BUT it’s because our gut told us differently. And we’re following it. So, if heading off to Middle School (so’s mine – OMG they’re getting old. Not us though.) is the gut, “feels right,” option – TAKE IT. One time, just once, I didn’t follow my gut, and it had disastrous and dangerous results. I will never make that mistake again. Further – I find that decisions made with the heart – those ones that feel right – they’re much easier to undo when they don’t work out, than the ones that went against your gut. Those always seem to be near-permanent. If your gut is saying send him to school, send him. If it turns wrong, your gut will tell you that too, and you can homeschool or tutor, knowing that’s the right choice at THAT time, and not before.

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    Another Dawn June 1, 2011 at 8:04 pm #

    I wouldn’t take advice from Temple lightly because the woman knows of whence she speaks. She lives it every day. But the salient points here, I think, are that you know Monkey, he is more sociable than most on the spectrum and he wants to try going to middle school.

    I think if it were me, I would send him to school, and prepare myself for homeschooling or a home tutor, whichever your Plan B needs to be and if he needs to come out of school, you can make the transition as smooth as possible for him. I would expect doing it in reverse would not work as well, as being the new kid in school after all the other kids have already started is hard even if you’re not on the spectrum.

    You will always do what’s right, even if that means switching to a Plan B, because you are a good mom who loves the heck outa that kid and you are never gonna do wrong by him.

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    Karen R. June 1, 2011 at 8:23 pm #

    I have nothing but respect for Temple Grandin. However, she is not the one who has to live with the consequences of whatever decision you make. So you have to do what you feel — in your gut — is the best choice for you and Monkey. Public school, private school, homeschool, or something in between — nothing is set in stone and cannot be changed.

    That said, middle school seriously messed up my HFA daughter, with consequences we are still dealing with ten years later. And this was a private special ed school where they claimed to be experts with autism! Please tell me what expert thinks it is okay to ease anxieties by repeatedly forcing a child to confront the things they fear? Rather than anxieties she had — until attending that school — worked through in around six months, she ended up with phobias that we are still dealing with.

    Stay involved, and check in often (as if you have to be told that…). My daughter’s school did not permit classroom visits, and assured me that her growing fears were a normal part of autistic adolescence. My daughter assumed I knew and condoned what was going on, and did not tell me until she was safely out of there, after three years of torture. Yes, I feel guilty that I did not try much harder to get her out sooner.

    Good luck with whatever you decide to do.

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    Flea June 1, 2011 at 8:37 pm #

    I am practically biting my tongue OFF. But am not going to weigh in. You are the mama. The mama bear. You know your Monkey best. Wait – that makes you the mama monkey. Do what’s right for your boy. If you decide to pull him, there’s an online public charter school that we’ll be using in the fall. I’ll let you know how well it works out if you’d like. I’m relieved that I won’t be my boy’s teacher, but that he won’t be in a school environment, bullied and held back academically. But I sure wish I could have kept him in school, that school was the bright shining star I wanted it to be.

    *sigh* Nothing is ever what we really want it to be.

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    Christine June 1, 2011 at 9:27 pm #

    Temple Grandin is an inspiring person who herself has autism, and is a wonderful advocate for those with autism – but does that make her the expert? She writes that she was not at all socially inclined – Monkey is! Your gut had been telling you that middle school was the right thing, that is the expert I would be inlined to listen to! Also remember that this amazing woman, who has been successful as an adult with autism, was in public school – a decision that may not have been right for her, yet she still found a way to thrive. Monkey will thrive despite the lack of a crystal ball to ensure the perfect decisions because he is loved, you are a fierce advocate, and you’ll course correct as needed. I wish I could share my GF cupcakes with you and give you a hug!

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    Deb June 1, 2011 at 9:54 pm #

    I wish I could reassure you and tell you it will be okay. It will be… one way or another. But the doubts, they never go away. My soon will soon be 22 and I still beat myself up with the “what ifs” and the “if only I hads.” I think it’s the curse of motherhood.

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    Paula Douglas June 1, 2011 at 9:54 pm #

    Listen to Otto, listen to Monkey, listen to yourself. You are wise to hear what others say, but listen to those who know Monkey and know you.

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    Rasselas June 1, 2011 at 10:16 pm #

    Whoever may be an expert on autism, you’re the expert on Monkey. From all that I’ve read so far, it sounds to me like you made the right decision.

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    Mel June 2, 2011 at 12:05 am #

    Trust your intuition. You seem very tuned in to Monkey, at least in so far as that is possible. You advocate for him very well, while still wanting to give him the chance to gain his own coping skills. I think you do really feel that school is what’s best for him all things considered. (in other words I don’t hear you making justifications and excuses) and finally, Monkey himself wants to go. This is a huge factor in trying to make it work. You’ll know if and when you need to pull him should things go bad. But, you are making a good, reasonable decision based on what you know right now. I think in parenting anyone, a certain amount of flexibility is key because you know what? It can ALL be a crap shoot! The important thing to remember is that you did your best, at the time, with the information you were given, you know? That’s all we can do. And then be ready for everything to fall the hell apart! :-) (that’s meant to be funny!)

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    Book of Jenn June 2, 2011 at 2:07 am #

    Holy shit, Temple Grandin? Really? WOW! That’s a great friend that talked to her for you. That being said, I don’t see anything wrong with giving middle school a try, keeping homeschooling as an option. And I loved what Otto said. He’s a good egg, that one. (I’m assuming you read Asha/Parent Hacks’ Q/A on pioneerwoman.com about homeschooling an aspie… awesome, awesome info.)

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    amanda June 2, 2011 at 4:22 am #

    First, LoVe Otto’s comment. He is soooooooo very right.

    Secondly, I must chime in with the socialization thing…

    Whether Monkey continues his public school education or you embark on a homeschooling eduction, socialization should never be the reason to place a child (NT, or Aspie) in either.

    My Aspie is homeschooled. He has more of a chance to socialize that he would if he were in public school. He also gets more guided socialization and I am able to be more hands on with teaching him how to act. There are groups that you can join to do these things to. You may be surprised at how many homeschoolers of Aspies you could find in your area who are looking for more people to hang out with.

    My boy used to be a lego freak. So we joined a lego group of just Aspies. They met and had some social skills lessons while doing legos. Awesome fun, and awesome learning!!

    Monkey would be able to pursue his own interests in the afternoons because more than likely his schooling could be done by lunch time!!! IF not before!!!!! There are awesome computer curriculums out there for advanced learners!!

    I don’t blame you one bit if you keep him in public, but please… PLEASE… do not use socialization as the reason to keep him IN there. Socialization at public school SUCKS lemons. It’s soooo NOT normal in the adult life to be stuck in a room with peers like that.

    Read this: http://thepioneerwoman.com/homeschooling/2011/02/socially-certifiable/

    and this: http://thepioneerwoman.com/homeschooling/2011/02/homeschooling-an-8th-grade-perspective/

    Both of these articles are written by an 8th grader and I think they show how homeschooling a child is not as detrimental as so many often think.

    Either way, you will make the right choices for your family. That’s ALL that matters. At least you can change your mind either way if all goes wrong. People pull their kids out of public to homeschool during the year all the time… and I’ve even known a few instances where people place their kids in public school mid year after homeschooling the first half.. so no worries… it’s fixable.

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    addy June 2, 2011 at 8:06 am #

    There is always doubt in parenting. Every parent second-guesses decisions every day. Your child is on the spectrum – you get to second-guess more …Lucky you! You are the Mommy – you live and love Monkey like no other. Your choices and opinions matter more than anyone else – expert or no expert. It feels right to you for Monkey. No more second-guesses. Love to you Mir and to Otto. Clearly you are the experts here.

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    Michelle June 2, 2011 at 8:24 am #

    I don’t have kids on the spectrum (though as a fairly high introvert I think I have some sensory issues and I have a daughter who is the same way) but I wanted to tell you that even so, I have doubts every day about what/how I’m doing as a parent. My husband, bless him, has been reminding me for the last 12 1/2 years that there are a lot of ways of getting it right. I think trusting your gut, listening to what Monkey wants and then seeing how things go is a smart approach. If it’s not working, he’ll let you know and you can change directions at that point, right?

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    bonuela June 2, 2011 at 11:54 am #

    i already commented yesterday, but feel like i sounded b!tchy instead of encouraging. (damn fever)

    I would like to try again, this time using your own words to show that clearly your efforts are paying off! only YOU can decide what is best for monkey.

    “At dinner, I asked Monkey to say grace. “Dear God, thank you for my family and my friends and this food,” he started out, as he always does. A pause. Then: “And thank you, God, for all the wonderful memories from this school year. It was mostly great.” I peeked across the table at Otto, at this, who looked as surprised as I felt. “And thank you for the parts that weren’t great, because they were good lessons,” he added, sincere and somber. I felt my breath catch in my throat. “Amen!” he concluded. “Let’s eat!””

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    Kim June 2, 2011 at 12:33 pm #

    Some really great pints in here. FWIW – I think that starting the year at middle school, when everyone feels lost and confused, would be an easier transition than in the middle of the year.
    Otto is great, as always. I do think it’s worth asking Monkey to visualize the best possible day at school, to know what he’s hoping for and explore other ways of getting there, makes sense, too. Because some of those homeschooling options sound great.

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    Kristi June 2, 2011 at 12:37 pm #

    Oy. Difficult indeed. But if Monkey is willing, I say give him that chance, but just be prepared to change plans if it doesn’t work out.

    I am faced with a similar problem, though my child does not have special needs. The middle school she is going to (we are military and face new schools every couple years) is awful. Without getting into details of how awful it is, I made the decision to take advantage of the open enrollment in another district. She is NOT HAPPY about this but I am sticking to my gut that tells me she needs to be pulled from this school. If it doesn’t work out and she really ends up miserable, I will homeschool her.

    Good luck to you, Mir. This parenting gig sure can suck, but all we can do is try our best.

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    Daisy June 2, 2011 at 1:07 pm #

    Part of Temple Grandin’s disability (just like our boys and their Asperger’s) is a lack of discretion when talking and giving advice. She knows autism, but you know your boy. You’re a very vigilant mom because of Monkey’s needs. Wherever he’s attending school (or not), you’ll make sure the folks in charge are working to meet his needs.

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    Ani June 2, 2011 at 4:07 pm #

    No advice here. Just sending virtual chocolate. Parenting is hard.

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    s June 2, 2011 at 4:18 pm #

    I feel for you because it seems like so many people just wake up with “the answer” and they have no doubt, whereas I seem to flounder and flop like a fish on the shore, always that doubt in my gut and my heart and my mind – no thunderclaps, no light shining the way down the correct path, no spiritual voice telling me the answer is within… I hate making decisions. But…this I do know – no one can make that decision except you – no one, regardless of their experience, their credentials, or whatever else. They can give you advice, their perspective, their beliefs but you….you are the expert on your family, your son, your situation, and if it doesn’t turn out to be THE best decision, have faith that you and your family will adjust, will work it out, and if you all falter, you’ll pick up and start over. don’t beat yourself up about it. you’ll make the best decision you can and you’ll work with it or change it or whatever!

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    Annette June 2, 2011 at 4:28 pm #

    Was going to say what Otto said:). Of course it is black and white to Temple. That is the way her brain works. Monkey appears to be very grey to me:)
    That said, very few decisions are irreversible.

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    Michelle June 2, 2011 at 5:16 pm #

    Just a quick note to say that this decision can change — you try it. Monkey doesn’t like it. You try something different.

    You are allowed to change your mind.

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    parodie June 2, 2011 at 6:00 pm #

    Wishing you wisdom and discernment, clarity and confidence. Good luck.

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    Chantel June 3, 2011 at 11:31 am #

    Homeschooling. Is. Awesome.
    Temple Grandin is also awesome. ;)
    My career working with a variety of children, including those who fall in ASD-PDD-NOS “labels”, is very, very awesome. I think I like the personality traits of people with ASD better than most people without. :)
    I think homeschooling provides opportunities to children that the public system just can’t match. I think the public system provides social learning (good AND bad) that homeschooling just can’t match. (I only mention social learning specifically because that’s usually a big goal for people).
    In the end, you said the words that will always ring the most true: “I’m the expert here because I’m his mom”. You know best – you really do. Professionals, such as myself, are only offering information that we’ve learned and *hope* works out for the best.
    You are the Mom – you act out of love, concern, and hope. Those are all the right reasons…decisions can be made – and un-made if needed. ;)

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    Kelly June 3, 2011 at 2:01 pm #

    I didn’t realize the doubt/guilt that would come with parenting. Every decision has at least a little. But all we can do is be their advocate and do what we feel is best for them, based out of our love for them. You are a role model for us in sharing the thoughts behind these hard decisions so we know we aren’t alone – that others also deal with doubt. Thank you

    And Otto is a keeper!

    If you are interested, my SIL taught an autism classroom in a Ga high school. She might have a different perspective and I could put you in touch.

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    Fairly Odd Mother June 3, 2011 at 8:00 pm #

    OK, I’m so not in this arena of discussion that I wasn’t sure if Temple Grandin was a person or a place.

    That said, I think you’ll have to do what is best for your family. And for Monkey. I guess if you get to the point where you need to homeschool, you’ll know it. I have family members who knew it was time to get their son out of public school when he started threatening to hurt himself. But, he also fought the decision tooth and nails b/c he didn’t want to be “different” from the other kids. A couple of years later, it is remarkable the difference in him. I’d say, keep an open mind.

    And good luck, Mir. I question whether or not I’ve done the right thing all the time, so homeschooling is no magic solution to all problems.

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    Michelle June 3, 2011 at 11:05 pm #

    As the developmental pediatrician told my best friend (who’s son has nonregressive autism), Once you’ve met one child on the autism spectrum, you’ve met one child on the spectrum.

    My son is spectrumy and I can totally relate to the DOUBTS!!!! But what I tell other special needs parents – you make the best decision you can make with what’s in front of you. Unfortunately none of us got crystal balls with our babies.

    Now if I could just adopt that philosophy … easier said than done!

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    Meg June 3, 2011 at 11:06 pm #

    Hi Mir. Wow, that’d rock the hell outta me too. My 6 y.o. daughter is autistic and is in the middle of her second term at a mainstream school. Still question whether it’s right for her, every single day.

    But for what it’s worth — and you obviously don’t need my approval!! — I think what you guys are doing is great, and perfect for Monkey, and it’s not set in stone. You’ll change things along the way to improve his life, just like you always do, for him and for Chickie.

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    Wendalette June 4, 2011 at 1:23 pm #

    Just to give a little background — all of the children in my family have gone to public schools, private schools and been home-schooled in various combinations (some of us started in public, the others started in homeschool), one of whom is definitely an Aspie. (Our parents also exhibit Aspie tendencies–what I’d give for a diagnoses for them!) And as I am the oldest (I was an adult and had been to college already when the youngest kids reached school-age), I had the opportunity to also teach the younger ones myself, which included the Aspie, and to observe them later through public and private schooling. And I went on to specialize in academic tutoring (specifically writing, but other subjects as well) for folks on the spectrum or with other LDs.

    I’ve read all the comment left above and have been following your adventures through Aspie-land since before Monkey was diagnosed. From my decidedly non-professional, and non-involved point of view, it seems that the decisions you’ve made for (and with) Monkey have been beneficial — if often painful — especially because you both have gotten to learn his strengths and limitations and ways to try to cope, which is essential for all of us but so much more for high-functioning Aspie’s. That being said, and considering:
    #1. your knowledge of Monkey and what he can and can’t handle;
    #2. Monkey’s growing knowledge/awareness of himself and what he can and can’t handle and is willing to try;
    #3. Temple Grandin’s expertise as a person with autism, which shouldn’t be discounted;
    #4. Ms. Grandin’s experience as a person who grew up without many of the benefits of knowledge and programs for special-needs kids versus today’s programs and opportunities, which may color her advice somewhat;

    [Hey peoples–I know that’s what many of you said, but some of you are starting to sound like “haters” on Ms. Grandin]

    #5. Your experience with getting said programs and opportunities implemented for Monkey in the school system in your area; and
    #6. The fact that Monkey and Chickie will be at the same school at the same time for once in so long,

    it does seem that letting Monkey go ahead to middle school would be the right decision for now, BUT making preparations ahead of time for the possibility of pulling him out for home-schooling either later in the year or for the next year based on his experiences.

    Do you think it would help Monkey know that when and if things get to be intolerable, that home-schooling is an option? Would that knowledge help him to relax a little and pressure himself less as he tries to learn and make the necessary social adjustments in the jungle of middle school, and (I’d hope) thus make the experience a little less (relatively speaking) traumatic? Or would he push himself even harder and stress himself out to prove that he can ‘tough it out’? I guess I’m saying, as long as he also doesn’t feel like home-schooling is a cop-out, or a sign of failure on his part, then either way you go — if you choose to do so immediately or eventually — then it’s all good.

    And if you find that Monkey is thriving in conventional school, then that also is good.

    It sounds like you already do schedule with Monkey monthly (or weekly) assessments of how he’s doing and his personal and academic goals, which I hope he finds empowering and helps him to self-advocate, so with that and meetings with his counselor(s) and teachers, you’ll be able to determine what, if anything, needs to be changed.

    In this situation, it looks like there are no bad choices, for now at least.

    We, your friends on the interwebs, and your friends IRL, are full of a$$vice meant in the best way from our fondness and concern for you and your family, but we all also know that you (and Otto) are the best arbiters in any situation involving your family. So, for what it’s worth, you have my support (and I’d like to think from all the rest of your readers) in whatever choice you make (and offer any help if I can!).

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    Wendalette June 4, 2011 at 1:24 pm #

    P.S. Sorry about the long post. Didn’t mean to hijack it like that.

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    Jen June 5, 2011 at 1:03 am #

    I think, as parents, we have to take the information we have found and/or thrown at us, digest it, and finally go with the gut. I know I’ll be making that decision next year as my oldest is staring down middle school, knowing that even NOW he’s been begging me to homeschool him. I’m not ready. I might be in a year.
    I heard Temple speak a little over a year ago, here in Boulder. She is…amazing isn’t quite the word for it, but the closest I have. Inspirational is close. My son isn’t Aspie, but I do have my moments of truly wondering. SPD for sure, and huge doses of OT have helped that. Temple is doing more for Aspie/Autism kids than anyone, simply by being herself and SHOWING THE WORLD that Autism is just being different…not less, not weird, just different. And that’s ok.
    I wish you were out here in Boulder. The Temple Grandin school opens this fall; a 6-12 school for Aspie kids. It’s the first of many they’re planning and I can’t wait to hear how it turns out. I’ve been encouraging my friends with kids on the spectrum to get their kids on the wait list now. I truly believe it’s going to be a game-changer.
    Go with your gut, hon. And know that all appearances to the contrary, our kids are more resilient than we think. If you need to pull him this fall, pull him. And then go from there.
    It’s gonna be ok.
    Now go have wine. With buttered popcorn. That helps, I promise. :)

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    Kris June 5, 2011 at 7:34 pm #

    You are the expert, of course. My son always wanted to be at school too, we sent him through 4th grade. He’s not on the spectrum, he’s more of an ADD-er. He was mad as all get out when we decided to pull him and home school for 5th grade. Now at the end of the fifth grade year he loves home schooling, and has no desire to go back.

    So I would say — here’s my assvice — don’t discount homeschooling just because you know that Monkey likes socializing. Home school does not have to mean no socializing. It can mean no disfunctional socializing though, which is of course a good thing.

    Give it some serious thought, you may find that it is a zillion tons of pressure off of both you and Monkey not to have to deal with the whole school thing. You might try it and absolutely love it. Again, assvice, but I’d say you have given school a try and it’s been very hard on both of you. I think having him go in the fall then being pulled out part way in might be harder on him (and you) than just giving home schooling a try from the get go.

    Honestly, all year I’ve been following Monkey’s story, and I’ve continuously hoped in my heart that you would home school, but I know you work. That makes it harder but not impossible, not at all. Maybe it is time to try it! You could always send him back to middle school if it doesn’t work out.

    Just my two cents to the expert. :-)

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    ~annie June 7, 2011 at 11:26 am #

    Having met Temple Grandin myself I can say she is excedingly knowledgable, wonderful and sincere. That being said, YOU are the expert on Monkey. And Monkey is smart, too! If he really wants to give it a try at school, let him. If it ends up not right after all, changes can always be made, even if it’s hard. Very few things in life are truly absolutely irrevocable.

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    kathy June 9, 2011 at 2:37 pm #

    I’ve wanted to say what Temple advised to you for over a year now but didn’t think you’d be open to it. I still don’t think you are but I’ll add my voice. I have 1 kid in school, 1 going to school in the fall and 2 homeschooling. I think it would be very hard for Monkey to make an informed decision about homeschooling without tyring out some of the events, clubs, classes, groups, etc. offered by the homeschooling world. The fact that you seem to dismiss homeschooling by saying he needs social situations tells me you really don’t understand what is available. Maybe you’re in a hole of no groups, clubs, activities, etc.where you are, but I wonder if you’ve tried introducing him to the homeschooling support world so he can make an informed decision.

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