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albeto
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| Posted: March 30 2007 at 3:10pm | IP Logged
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My oldest ds, 12, has Asperger's and all the alphabet soup dx that goes with it (adhd, anxiety, dyslexia, dysgrafia-and-everything-else-ia, etc). He's been in and out of ps, finally we found a great Catholic school who has been so gracious in accomidating his needs. He has a private tutor at all times to help use appropriate skills, reinforce those skills, give him options when he's stressed or confused.
Things have really taken a downward turn since Christmas (not that he was ever really consistantly independent but it sure was looking good for a while) and I can think of a million reasons why, but the bottom line is that he is no longer capable (willing?) to participate in classroom education any more. We've run programs to desensitize him to this stress numerous times (ps really did a number on him) but it's come back to this - he can't (won't?) stay in the classroom anymore.
Some of it I can understand - this homeroom teacher is the first one in this school where the kids rule - she isn't comfortable being the boss so the kids, who used to be an unusually kind and courteous group, have become roudy, noisy, non-compliant and laugh at each other. I have no problem with him not being there because of that, except for the fact that everyone seems to think my kid is so attatched to me that to bring him home is exactly what he shouldn't have - my undivided attention.
I'm close to tears whenever I think about what might happen to him - am I a doing a disservice to him by bringing him home? Will he ever learn independence if I unintentionally manage to always make sure things aren't too stressful for him? Will he learn to rely on himself if Mommy is always there to help? I'm afraid that when he gets very stressed he becomes oppositional and defiant and if I'm the only one in the house with him and he refuses to do school work, what then? Unless things are "interesting" to him he seems to have little motivation to give an honest effort at anything. Years of ABA training led reiforcements to bribery to demands. That wasn't the plan!
I also feel like my discipline has been inconsistant for so long that he's just on survival mode from day to day (that post about discipline has been invaluable to me). He certainly desires my approval but his "need" to control is such a strong impulse for him. He hates this conflict himself and it's really hard on him. I guess I'm just anxious because I've heard one too many professionals tell me how important it is for his future to not be so dependent on me and now I have to bring him home. How can he learn dependence when he's got Mommy around all the time??? Please tell me someone else has made this work. I think this kind of learning would be so good for him but I'm afraid the skills of independence would be lost.
And yes, this is a particularly difficult day - I'm not always crying on my keyboards! Just a little nervous, I guess. I've always wanted to homeschool him because I thought he was missing out on real education at school but his need for social skills is so great and being surrounded by NT peers all day long has been invaluable. I guess I'm just frightened now that I have no choice.
Any advice to help this transition from unsuccessful school to successful homeschool?
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marysjoys
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| Posted: March 30 2007 at 4:13pm | IP Logged
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I am so sorry for the dilemma in which you find yourself. Pray to the Holy Spirit for guidance, and try and shut out the non-essential voices telling you what to do. (see the marysjoys:downsyn thread about my IEP meetings, that sage advice can apply to all special moms in a quandary about their child's education)
The most uplifting book which won't answer your questions but may give you inspiration to deal with them is Precious Treasure
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Mom to three lovely girls, Gabby, 13, Bella, 9, and Christina, 5 who has Down Syndrome.
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ALmom
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| Posted: March 30 2007 at 4:20pm | IP Logged
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Please know we will be praying for you to find peace and be led to the perfect decision for your child - ways to make the transition positive, ways to meet real needs that are harder to do from home, etc.
I cannot give you answers as I do not have your experience or your knowledge of your own child. And I know my situation is so different as I am dealing with a child that didn't have any diagnosis of special needs so I didn't have the added pressure of trying to discern whether or not things would develop - just assumed they would in their own time and place - and I know that with some situations, a parent must work to help a child do what others seem to do with just natural exposure - we had this with some vision issues.
Again this is all so different from your situation, but perhaps it will help you to know that we were repeatedly told over and over that our child would never become independent because we kept her so close to us. She didn't have any "special needs" other than that she needed me for whatever reason. I could not leave her with anyone for even 5 minutes (not even her dad), she nursed so, so long in everyone else's mind and I knew she was nursing at 4 like most newborns, she clung to me in crowds even as an elementary age child. People told me something was wrong - either emotionally or otherwise. Others told me she just had to get used to being in a group and we'd just have to force it for her to ever learn. We knew we had to homeschool - most everyone else wondered at our wisdom but I just knew - how could we abandon this child to something that was so frightening to her, for whatever reason. There were dire predictions, etc. This child has become the most socially adept child now. She was the child in high school that felt so limited by small groups and had to mingle in crowds of all different kinds of people. She somehow developed those social skills in the midst of her family and in the midst of very controlled, positive situations. Her experiences with interacting with others were all set up for success. She had the assurance and comfort of our presence for so long that most were really worried. But somehow the security of being allowed to take baby steps, also gave her confidence and kept her from having the baggage of negative associations.
Prayers for your decisions. I wish I had answers to your specific question about transition - but we are navigating that with our sis right now and my nephew who has started schooling at our house after some very, very negative experiences in ps.
Janet
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Maturemomg
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| Posted: March 30 2007 at 4:49pm | IP Logged
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Sounds like you are dealing with a lot right now.
My only advice is to TRUST YOUR OWN INSTINCTS.
While the "experts" may know some things,YOU are the parent and YOU know your son best. Personally, I think hsing would probably be best. You can most clearly see his needs and meet them. If his needs are not met, things will be harder for him. You can at any time change your mind if you decide some other option is better for him (or some hybrid option, whatever). Tough cookies if some professional feels you shold have done X long ago. Maybe so, maybe not. But you are at the point your are at then, deal with it then, don't worry about the past. And NO ONE has the right to judge your decisions, right or wrong! (Except God, and He is very merciful if we do the best we can.)
And the "experts" may not in reality kow all that much. maybe lots of book learning, LOTS of theory, and a smidgen of experience working with Asperger affected children. And Asperger's as I undersatnd it, can vary greatly. So any experience they may have may NOT apply to your son.
Look at him FIRST as a person, a 12 yo boy, and what he is like, etc. I've had 4 boys that were all 12 at one time. Each had different needs and acted differently. The Asperger's is there, and you need to consider it, but don't let it overshadow everything.
It will all be fine. And he will be what he will be when he is.
Seems to me that the greatest challenge we have as parents of special needs children (of ALL children, really) is to help them become what GOD wants them to be, not what we or others have preconcieved is what they "should" be.
ETA: If it's NOT the right thing, and you do the best you can (and pray about it), I believe God will lead you in the direction you need to go. I think most of us can say we have thought about this in regards to some aspect of some or all of our children: Have I waited too long to seriously work with him on reading? Have I not pushed him hard enough to work to his full potential? Did we take too much time off for fun? Have I been too rigid with Susie?
They turn out fine, in spite of our failures!
Yours in Christ,
kathy
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folklaur
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| Posted: April 09 2007 at 8:11pm | IP Logged
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my son is only 8, and he has been dx-ed with Asperger's by a developmental pediatrician back when he was between 4 and 5 (who said he could also make a case for HFA, but he ( and us ) really felt that he "fit" AS better, overall).
My son went to the local Catholic school for PK, K and 1. After that we brought him home, and I, on one hand, wish he had never gone to school, but honestly, on the other hand, he had really excellent teachers and was in a loving safe environment in each of these classes. Yes, I have been told that he "needs to learn independence, etc." too.
One thing I was thinking about, as I watched Oprah of all things the other night, as the show was on Autism. ( I never watch Oprah, I was just happening to flip thru channels and there it was about Autism. Even dh watched it with me.) And what struck me over and over again, is that children with AS or even HFA - often times, to others, - look like children who are undisciplined or "spoiled brats" if you will.  If they were blind, or missing a limb, it would be a "real disability" to the rest of the world. But because they "almost fit" it is invisible to everyone else. Or what isn't invisible is thought of as "bad parenting" and not a disability. People don't really honestly accept AS / HFA as "real" unless it is a severe case, I think. And, even worse, it seems to be the new "designer label" that every child is getting dx-ed with.
Now --regarding what you said about the situation at school --
if this child knows every single day is going to start out as stressful ( and more importantly UNPREDICTABLE) than there is a big reason there why he is going to withdraw from it. An Aspie likes structure ( and lots of it, right?) But if every day is starting with a possible joke he won't get, possible torment from others, an adult ( one of the few usually predictable people in the classroom) not doing what is expected -- how can this child who already is trying to work through the "social maze" on GOOD day, have any chance of making it through day after day of BAD days? School becomes another of those scary, unpredictable places where you just feel awful all day. And so "I hate SCHOOL" is the result, even if it is more like, "I hate that I don't know what is going on, I hate that I don't know what is going to happen next, I hate that I don't know what they are saying, I hate that I don't know why the teacher is acting like that, I hate that I don't know what I should do, I hate that I don't know what I shouldn't do, etc"
As for home, I would never even let it enter his mind that he could choose to "not do school." This of course means YOU have to be completely accountable with your schedule, and consistency. If the rules are laid down and presented as "This is the course of our day - Math, Reading, Playtime, etc" each day and every day, as long as you stick to them, and don't budge, most Aspies I know would be more than happy to comply with the nice structure and predictability of their day ( even if inside you are screaming for some spontaneity. I know. Really. )
These children DO have disabilities. Even if they have high IQ's, or great imaginations, and wonderful other aspects. People seem to want to tout the idea that " Well, Einstein was probably Asperger's too!" and then make it almost seem like it is a great thing. Well, I happen to think my son is GREAT, and he is PERFECT, and he DOES have a high IQ and a memory that often amazes me -- but he ALSO has Asperger's and he always will. And it doesn't matter how unique I think he is (and I DO!) he still has a hard time in social situations. And it doesn't matter if others can or can't see it. I have to live with it every single day.
Just because your son is in a group setting with a bunch of other children does not mean he is learning social skills. And, the social skills he may be learning may not be what you are hoping for either.
People seem to feel ( and this goes back to the idea that it isn't a "real disability" again) that if you just MAKE them do it, they will somehow learn. If you MAKE them go to school, they will learn social interaction. If you MAKE them eat their food, they will learn to like it. But with an Aspie or autistic child -- that just isn't so. If they won't eat something, it isn't always because they won't -- it is because they CAN'T (and you, as mom, get to figure out when it is which one - "won't" or "can't". And it is a LOUSY job, and hard too.  Because sometimes it is just so hard to tell, especially with an Aspie.) An autistic child WILL starve themselves if only presented with foods they can't tolerate. And they will also withdraw more and more if put into situations where they just don't know how to navigate it.
I have a friend whose son is quite autistic. She once told me she thought I had it so much harder with my son, because with her son it was obvious he was autistic, but with my son, he just seemed "a little off, a little different, a little 'strange'," for want of a better word. (And all this time, I thought she had it so much harder. Perspective is so funny, isn’t it? )
Yes, homeschooling can work with an Aspie, and there are LOTS of social opportunities with homeschool too.
The idea that somehow an autistic child needs to be away from his mother in order to learn or thrive just drives me crazy. It is the reverse of what they used to tell mothers of Autistic children -- the experts used to say that the child was "that way" because the mother didn't really love them. Now we love them too much for their own good. Sheesh. Sorry. Personal pet peeve...
Well, this got very long...I didn't mean for it too…sorry about that… 
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4 lads mom
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| Posted: April 09 2007 at 8:35pm | IP Logged
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Wow, great post, Laura!! What insight!! I have a kiddo with a few hidden disabilities as well...and it is a constant "emptying of self" especially my own ego, that has to happen. God knows what I need for sainthood!
Keep sharing everyone, I love reading about other moms out there who are involved in "Extreme Motherhood"...that's a term I coined with another girlfriend who has several special needs kids too......Those silly reality shows don't have anything over us, girls!! Dropped off on an island, surviving on our wits? PLEESE...How easy would THAT be?!? 
4 Lads' Mom with baby due in Sept.
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chicken lady
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| Posted: April 09 2007 at 9:23pm | IP Logged
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I don't have answers for you, but I hear your concerns and promise to pray for you. I do like the comment about you being the parent, and you trusting your own instincts. Easier said than done, so I will pray.
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shartlesville
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| Posted: April 11 2007 at 12:31am | IP Logged
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The best advice I have ever received was "try it for 1 year" if it doesn't work you can always go back to the way things were. I had 3 children, one with severe ODD (not the same but very difficult to handle), and I was pregnant with #4. It was the best parenting decision I have ever made.
If the "experts" say it is the wrong thing, tell them that you want to "try it" for the rest of the school year and summer and will determine before school starts if you want to continue.
Don't give up too soon, homeschooling isn't easy. Try it for one year and see if it is better for him and for your family.
We will pray for you!
Blessings,
Krisann
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Krisann
DH Cris;
DC John, Elizabeth, Lilyann ^i^, Emily, Kate, Julia, Sam, & Jack;
DGC Kira, Auston, Travis, & Sarah.
My Blog: Isla del Esperanza
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trish
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| Posted: April 12 2007 at 2:11pm | IP Logged
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My ds is 17 and he has aspergers. I can say that from my experience that homeschooling him was the best thing we did for him. He went to school until gr. 3 (we pulled all of our kids out in the middle of the year).
We didn't know he had aspergers at the time just that he was 'different'.
Looking back these last 8 years knowing now that he is the way he is and we can't change him homeschooling was the best way to go. He was always getting teased and he laughed with the kids who were making fun of him. He just didn't 'get it'. But he probably will always have to struggle with that aspect. Any ways I'm rambling.
He can memorize a poem in no time at all. He can remember tiny tidbits from 10 years ago!! Reading out loud to his younger brothers and sister. No problem! But he can't memorize his maths facts. Until we knew he had apsergers I would almost literally pull out my hair. It would get so frustrating.
His comfort zone is his family and he acts like the loving , wonderful, and caring son and brother that he is in his comfort zone. Outside of it (although with time it's gotten better) he has a very hard time. He's very comfortable with younger kids because they accept him the way he is. But get him with kids his own age forget it.
We've accepted as a family that he'll be here probably alot longer than the other kids will be before he leaves the nest so to speak. But that's okay. God will lead us to where we need to go with him. And God will help him be who he needs to be with prayer and lots of love.
This son will literally cry when it's his turn to recite the sorrowful mysteries of the rosary. He can see Jesus' suffering and it hurts him. God will keep him close to His heart. We just have to trust.
Trish
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Angel
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| Posted: April 12 2007 at 3:54pm | IP Logged
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I think everyone has given you really good advice, and I just have to say, 4 Lads' Mom, that "Extreme Motherhood" is one of the best descriptions I have heard in a long time! My oldest (10 yo ds) has Tourette Syndrome, which often comes with a long list of alphabet soup attached. He has no official diagnosis of Asperger's or any other autistic disorder, but he's probably on the spectrum somewhere. (Hard to tell with all the other TS/sensory-integration/ADHD stuff going on.) Anyway, homeschooling him can sometimes be tough (really tough), but I have to say that I think it is the best decision we've ever made. I can't imagine this kid in a classroom; I have no idea how a school could possibly accomodate his varying needs -- from gifted to learning disabled, plus all the issues he has with frustration in between.
I think the biggest thing homeschooling has done for him has been to let him be himself. He's gotten to learn on his own timetable, and we're able to work on the social issues in a safe place. His self-esteem seems to be intact. I don't know that this would be so in an institutional environment.
I think that you should definitely trust your instincts over the experts, because YOU know him best. Have you talked to him about what he might want?
--Angela
Three Plus Two
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albeto
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| Posted: April 13 2007 at 5:37pm | IP Logged
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Thank you all so much for sharing your insight and experiences! I appreciate it all so much! We're home now and I've learned much more about my ds than I ever thought I didn't know. Something about having him home all day that gives me a knowledge I just couldn't get in the few stressful hours after school.
One thing I notice is that his play skills have regressed a bit. For now I'll attribute that to detoxing from a very stressful environment but I still am concerned that without model peers to watch he has much less information coming in about how kids his age ought to act. Our town has it's share of homeschoolers but many of them are militant atheist unschoolers. I don't think that would be a good match for us! All in good time, I suppose. I am also learning just how scattered his learning is. Fortunately there is still time to fill in the gaps.
Dh still wants him to go back to school next year - something about the HS all-round popular guy mentality that dh experienced. I think he assumes it's a pretty natural thing to fall into. I pray that homeschooling brings out the freedom from anxiety for ds so that dh can see there is a reason for educating the whole child rather than compartmentalizing education and social skills for school hours. Not to mention simply education - to give ds the exposure to the academics he excells in and support his challenges.
I really like the "Extreme Mothering!" You're right on the mark there!
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4Real Forums : Special Blessings
Topic: what if it isn't the right thing?
