Well, in the inimitable words of Kurt Vonnegut, "The stinky excrement has hit the spinning cooling device" or something to that effect. We had a full-scale meltdown this morning and as a result, didn't make it to school. We've had more perseverative language and crying jags for the past two weeks, but this morning I literally couldn't get him out the door to school.
So that settles that- I got a physician's note excusing him from school until our next IEP meeting. Even then, I suspect that I will probably end up announcing my decision to homeschool. The school is clearly in violation of his written IEP- which is causing him severe anxiety, yet no one seems to care. His classroom teacher, despite repeated pleas on my part, repeatedly replied that she is too busy to meet with me. When I asked whether I could meet with the classroom assistant instead, the teacher informed me that the assistant didn't have any time in her schedule, either. He's supposed to have a one-on-one aide per his IEP, but that didn't happen, either. Nor did anyone get RDI training as was specified in the IEP. So my child is suffering and no one even cares. They all just seem to think I'm some overbearing, pushy mom trying to tell them how to run their school.
Even if we somehow work out a satisfactory solution at our IEP meeting, I fear irreparable damage has already been done in terms of my relationship with the school staff. No one seems to understand that all I am doing is advocating for my child. My precious child, who cannot stand up for himself. My wonderful sweet child, who has made such great strides in remediating his autism over the past couple of years.
So...it looks like I will, in all likelihood, be a homeschooler by default. So that is that. We'll give the IEP meeting a try, but I'm not at all optimistic, not after all we've been through.
At least we have a nice long weekend to relax, unwind, and hopefully forget about the horrible week we've just had.
Well, we finally had our IEP meeting and the results are a mixed bag. It turns out that his IEP never specified that he was to receive a "one-to-one aide", just "an aide"- which can include a shared classroom assistant, apparently. Just a case of me not understanding the language or them deliberately tricking me or perhaps both. I would never have agreed to school attendance without a one-to-one aide, so I do believe I was misled, whether intentionally or inadvertently.
At this latest meeting, they still refused to provide a one-to-one aide, insisting that his problems could be remediated simply through more effective communication with teachers. While I certainly agree that better communication is critical, I still feel that, based on my own firsthand experience, a shared aide is grossly insufficient to meet his needs. However, I was very impressed with the new teacher to which he will be assigned. She's a young woman, sounds very receptive, caring, and accommodating, and I'd like to give it a try in her class. She's indicated that she would be glad to meet with me as necessary, so that's certainly a good sign. A big change from the old teacher, who absolutely never had any time whatsoever to talk with me, neither in person nor on the phone nor by email and she never responded to my written requests, either! Not even when I told her that my normally sweet, happy child was constantly in tears and acting more autistic than he had in 3 years!
So we're going to start with him attending only three half-hour sessions of small group work per week. The kids in the classroom will be divided into small groups of 4 kids and each group assigned to a different area of the classroom. There will be one other disabled child (not autistic) in his group and a shared aide will be responsible for both. We'll give it a try and see how it goes. I'm not going to allow him to go to music or PE or any of the large-classroom activities because I know that a shared aide would just not work in a situation with 20 or more kids.
Honestly, after all we've been through already, I'm really hesitant even to try the small groups with a shared aide. But I guess I will give it a try. The bottom line is, the kid wants to go to kindergarten. So I'm going to try to make that possible for him. I'm going to meet the school halfway and agree to a shared aide for just those 3 sessions a week. I will not increase his hours until I've been assured that he will receive better support, so we may be in for more disputes in the future. But I refuse to make my child suffer any more just so I can prove that I'm right. If it comes down to it, I'll pull him out and homeschool and that will be that.
If it were up to me, I would have given up on this whole battle a long time ago. But I have to respect my child's wishes: he WANTS to go to kindergarten. He's not ready to go full day, but he really enjoyed the taste he got last year and he's eager to go back. After a 2-week hiatus, he's mostly forgotten the negative experiences he had earlier this year and is eager to start again in the new teacher's class. I sooooooo want this to work for him!!!
So far, so good. From all appearances, today went well. The new teacher is orders of magnitude better- and the lines of communication are wide open. The other child for which the aide is responsible is a sweet little girl with developmental delay- of course, they're not allowed to tell me her diagnosis, but she appears to be socially normal and doesn't have behavioral problems. So I don't think the aide will be overwhelmed with these 2 children, as long as she doesn't become responsible for any more kids.
On a related note, I spoke with the principal and she told me that the old teacher was intimidated by me because I'm a doctor! Whoa! I can't imagine ME intimidating ANYONE! I mean, I teach community college freshmen and they all praise me for being so accessible and NON-intimidating!! And that's when I'm all dressed up and they address me by my Dr. title. When I'm at my son's school, I go by my first name and I basically look like a slob in my T-shirt and sandals- I may be short and overweight, but certainly not an intimidating personage! The only context I even mention my medical training in is to explain how important RDI is for him and that I found the mission of remediating autism so important that I quit my medical career, despite a massive amount of debt. I can't imagine why she found me to be intimidating. That is one description I have NEVER heard about myself, but I suppose there's a first time for everything. I just hate that it had to hurt my son. I wish that, if she had a problem with me, she would have taken it up with me rather than allowing her feelings toward me to adversely affect my son.
Well, good riddance to her. I'm glad we found this out early and dealt with it. I just hope things continue to go well with this new teacher. My wonderful son deserves to experience some success and happiness and I soooo hope the school allows that to happen!
I've been bummed for the last couple of days. My son hasn't been doing well- lots of perseverative crying fits and I just can't tell what's going on with him. I know this will probably pass and I know I should be grateful that he seldom gets like this anymore- but it's always difficult when things come crashing down again like this. Most of the time, I try to focus on how well he's been doing- and most of the time, that's true. But at times like this when he decompensates, all I do is worry about the future.
How ironic- I just recently posted in another forum that I'm enjoying every day of staying home. I suppose I should re-phrase that to say "I'm grateful for every day that I'm able to stay home and NOT be gone doing residency". Most of the time, we're pretty happy. When my son's autism flares up- we're all miserable- but I know we'd be much more miserable if I were a resident and gone all the time, leaving my husband to deal with this alone.
Add to that the fact that I've started worrying about money. The recent discussion in the physician's forum has got me questioning my sanity. The physicians in that forum are stressed out and unhappy- and feel trapped- and feel like they don't have a way out- and they all earn orders of magnitude more than I do or perhaps have physician spouses who earn more. I have just as much debt or perhaps more as any other physician. My husband and I, combined, have a low enough income to qualify for the Earned Income credit on our federal taxes. I earn just enough to pay the interest on my student loans, which is all I'm required to do for the first 10 years of repayment, so that's where my whopping $5K annual salary goes. Otherwise, we're fully dependent on my husband's salary, which is modest and not likely to increase much over time. And if I never do residency, which seems likely, I'll never have sufficient earning potential to make even a small dent in my student loans. Not to mention saving for retirement or buying a house.
What on earth have I gotten myself into? I must be insane.
But the bottom line is, I really don't see any other option right now. I guess I'll be ok once I feel like my son is actually making progress again. It's all worth it on the good days, which have increased dramatically in frequency since I've been home with him. These bad days are just a reminder of how far we've come and how far we still have to go.
Anyway, sorry for the negative ranting, but this is just how I feel after listening to THREE HOURS of nonsensical, perseverative crying fits! Hopefully tomorrow will be a better day!
Sorry for not updating sooner! We've had some computer/internet problems- then my older son fell and broke his arm, so we've had our hands full around here. Thanks so much for all the PM's- I really appreciate the support. All things considered, we've been doing remarkably well. No more crying fits and I was able to discern the reason for the crying fit 2 weeks ago- it turns out he was sad that I was leaving him alone at kindermusik! I used to always stay with him for Kindermusik, but one day the teacher asked if he could stay alone. I asked him if that was ok with him and he said that was fine. So, for the next several weeks, I would sit out in the hall with the other moms and chat while both boys were in Kindermusik. Well, it turns out he wasn't ok with it after all- it caused him to have huge anxiety which he wasn't able to verbalize at the time. He told me "I want mama to go to kindermusik with me because I like mama!" Well! I don't know why he wasn't able to verbalize that at the time. A neurotypical kid would just cry and scream "I want my mama!" until the teacher gave in. Not my kid- he holds back all his feelings, tries his best to conform to others' expectations- then, once he's home in a familiar environment, has a complete meltdown. Hopefully he'll learn the appropriate way to express his feelings at the appropriate time in the future.
But I'm actually THRILLED that he WANTS me to stay with him! This is a kid who used to be completely indifferent to my presence. When I was in medical school and would come home from a long day, he would completely ignore me. He acted as if I didn't even exist. Even when he was a baby, way before I ever had the slightest idea that he might be on the autism spectrum, I recall once commenting to my husband "You know, I get the feeling that he just thinks I'm some giant milk machine. It's like he could not care less about ME- he just wants my milk!" When my second son was born, I finally realized just how true this statement was because he absolutely adored me and always has. So for my older son to express a desire to have me stay in Kindermusik with him- well, I'm absolutely THRILLED! So what if most 5-year-olds are beyond that stage? My child may be at a stage more appropriate for a 1 or 2-year-old, but that's perfectly fine- at least he's gotten that far! And the last thing I want to do is destroy the trust he's developed in me by making him feel "abandoned". He'll let me know when he's ready to be more independent- and if that isn't until he's 8 or 9 or 10, so what? We'll get there. This is a kid who didn't drink from a cup or feed himself until he was almost 4, didn't potty-train until after his 4th birthday, who just recently at 5 1/2 learned to put socks and shoes (on the wrong foot half the time!) and shirt on (backwards). So, if he's developing separation anxiety at age 5 1/2- TERRIFIC!
So...thank God I have the opportunity to stay home with him and be here for him, now that he finally has an internal motivation to bond with me.
So all this really makes me think about homeschooling again. The school is not providing him a one-to-one aide and is talking about fading out any support whatsoever, because he acts fine at school. He's a very compliant child who doesn't give them any trouble, so they're ready to completely mainstream him. Personally, I know that's the worst possible thing they could possibly do to him right now. They just don't see how he's crying inside because, unlike so many other kids, he never shows his emotions. He never tantrums or hits or bites or screams or runs away or anything. So, if they continue to refuse to provide him the support he needs, I will end up homeschooling and that will be that.
Oh- and MIRACLE OF MIRACLES- he's EATING NEW FOODS!!! YAY!!! This is a kid who for 4 years, ate basically the same 3 foods and nothing more. FINALLY- in the last 2 months, he's added pizza, fish sticks, cheese sticks, and vanilla pudding to his diet! YAY!!!!! Now he's almost become a "typical kid" picky eater! I actually used a behavioral approach to get him to try new foods. However, it had never been effective before, so I think he had to be psychologically and cognitively ready- because I'd been trying to bribe the kid for YEARS to try new foods, but his lack of dynamic intelligence was preventing him even from accepting a bribe to try new foods. Now, I've faded out the bribes and he often asks for the new foods just because he likes them. Hooray! Perhaps someday we'll progress to eating vegetables and more, but for now, I'm just thrilled he's eating something besides peanut butter sandwiches!
So...about the homeschooling... who knows how I'll ever pay my loans back then? I do enjoy teaching- and it's so nice to get feedback from the students about how much they enjoy my class. I even have a couple of students who are failing, but they still tell me how much they enjoy my class. I try my best to encourage them by telling them about some of the candidates I evaluated while serving on my medical school's admissions committee. Every year, we admitted students with W's, D's, and F's on their transcript- provided they made up for the bad grades with a consistent pattern of good grades thereafter. And if a student is really, really bummed out- I may privately share that one of those students was myself- with 5 W's, 2 D's, and 2 F's my sophomore year in college- when I basically quit going to class and didn't bother to withdraw. I love what I do and I really enjoy serving in this mentor capacity to the students. And I get to talk about medicine- to a rapt audience! Sure, a lot of the basic science is dull, but I can really see their eyes light up whenever I mention clinical applications and especially when I share stories from my med school years. For example, when they're having to memorize all those ligaments of the female reproductive system, I'll tell them WHY this is important. I show them what happens when those ligaments fail- some really gross pictures of uterine prolapse, cystocele, and rectocele. I'll relate a rather self-deprecating anecdote or two about my experiences scrubbing in on GYN surgeries as a lowly MS3. Whenever possible, I try to work in some preventive health awareness without sounding preachy- for example, I'll tell them about the patient I saw who had nearly died of advanced cervical cancer- she had survived only after complete pelvic exteneration, requiring removal of the colon, bladder, vagina, uterus, tubes, and ovaries. It was basically a medical miracle that she survived- and all because she missed getting her Pap exam for ten years (because she didn't feel comfortable with the doctor.) And so on.
OK, I am rambling away now- and it's getting late, so enough for tonight. Thanks for reading this far!