^ This. OP, your anxiety about his future is not lost on your child. I say this as a parent who nearly lost my wonderful, loving, kind, brilliant son at age 16. I pushed and fretted about him getting off track when I should have done nothing but listen and support. Nothing else. The IEP will be very helpful; now you really need to let up at home.
@Aspieration, I agree with many former posts on this thread and some of your others that you should be commended for your willingness to take all of this advice in from strangers and do it without defensiveness.
You have done an amazing job navigating the evaluation process and getting your child from being kicked out of a program at four to rather comprehensive treatment and IEP within the past three years. Your perseverance, among other things has made this happen.
For whatever reason, that moment of being kicked out of the program at 4 has traumatized you. It is natural to feel blamed as the parent of a special needs child, and to feel as though you failed as a parent (an I suspect that you as an individual have not failed at many, if not any, things in your life). If you flip it in your mind, you might find that your son’s failure (not yours) in that program turned out to be a gift in disguise as it has lead you toward this path of getting him evaluated, treated, and served. I don’t think the psychologist who told you that “it will only get worse,” did you any favors. I think when you are working with a four year old, a psychologist’s job is to instill hope, not hopelessness, as it is much harder to predict what the end result will be when working with such a young child, especially one whose parents have the motivation and resources to pursue treatments and fight for their child.
I hear your fear for the future, but you can’t live in that fear. It will lead to a terrible loss of the joy that you can be having now. When my husband and I were first married, he developed an extremely rare (only a few documented cases ever below age 30 up until that point) form of cancer, that was treated initially with surgery. After successful surgery we thought it was behind us and went on with our lives. Thirteen years later, unexpectedly and out of the blue, it recurred. It was treated again, but the ignorant bliss of our youth was shattered by the possibility of recurrence and for a while (a few years actually) I went crazy researching the disease, pumping him full of all manner of supplements, putting him on funky diets, and living in fear that the next blood test or CAT scan was going to produce the beginning of the end of our life together. Then, I joined a listserv (dating myself here) of others with this same rare cancer, and learned from those that were actually in the end stages of their young lives, that they were living more fully and less fearfully than I was (and I didn’t even have the disease). I realized that I no longer wanted to push my husband to do all of these wacky things and ruin the NOW that we had for something that may or may not happen in the future. Well, it has been 15 years since that recurrence, 35 years total of marriage so far, no sign of the disease for now, we have traveled the world, raised our daughter, sent her off to college, and are looking forward to retiring from our overseas job in a few years and returning to the US to do whatever is next. Through my experience with my husband’s cancer history I learned that yes cancer takes away, but it also gives. If you let go of your fear, you may also find a similar hidden gift in your son’s disability–if anything it has helped you to find a strength and openness that maybe you didn’t know you had.
I am not suggesting that you stop your son’s treatments or school based interventions. But, imploring you to let go of the fear for the future, because maybe it won’t “only get worse.” Embrace the little boy that you have now.
@NorthernMom61, WELL SAID. All of it!
My DH was diagnosed with stage III colon cancer at the age of 47. At first, I thought, “one year of hell, then all will be good.” But then I got on the internet and got freaked out completely. I remember walking up to the MD Anderson front doors the first time, and physically turning away, because I knew that once I entered those doors, I was joining a club I never wanted to be a member of. DH stopped, confused and impatient at my reticence. He was ready to get after it, what was my problem?
Eight years later, my initial take on the situation has proved true. One year of hell, and all is well. Cancer docs have released him for good. Don’t come back anymore.
I don’t have an autistic child, but I understand operating from fear. Hugs to the OP and anyone who is afraid for their beloved.
Thank you so much for sharing your experiences. I wish cancer out of your families lives forever and ever and ever.
@NorthernMom61 I’m so grateful that you took the time to really paint the picture of your experience. I can’t imagine how horrible it must have been. It really hit home when you described both the obsessive researching as well as the perspective (and release from anxiety) gained via the listserv.
So helpful and insightful. It had not occurred to me that I can choose not to live in fear. I admit that it is not something I can just ‘do’ but it is something I can work on.
Thank you.
@Aspieration, it was not immediate for me either, and I have to admit that after all of these years I still get scared when my husband does not feel well for more than a day or two. When dealing with something over the long term, you have to find healthy ways to cope and to let go of the things you can’t control. It is easy to say, but not always easy to do.
Both of your little boys are lucky to have such a devoted mom.
I remember a few times when my husband was sleeping so peacefully (finally) during treatment that it freaked me out. I thought he was dead! I would shake him vigorously, and he would stir and say “What?! What’s wrong?!” And I would sigh with relief and say “Nothing. Nothing at all.”
I am a registered nurse and understood full well the stakes when DH would go to Houston for his yearly CT scan and other stuff. He viewed it as nothing more than an inconvenience, while I would try to control my palpitations. Every time, he would get the “all clear,” and I would thank God, shaking with relief. DH was always surprised, saying “you doubted me?”
Cancer is truly wicked. I went to my very young aunt’s funeral today. She died of breast cancer at 63. She was the baby of the family. It’s just not fair.
@Nrdsb4 so sorry to hear about your aunt. It isn’t fair. And, a cancer funeral can trigger your own fears that you somehow manage to control most of the time too, making the event even harder to bear. Hugs to you.
OP -I think you are doing everything you can, but I also I think it is hard to predict where your S will end up, but easy to predict that his journey will be unique and that you and H will be much more involved than would have been the case without the extent of the ASD. There will be many types of community support available to more typical children at low cost or for free, that will not be accessible to your S, at least not for now, or not without careful planning.
Hopefully your hard work will pay off in helping your S and family meet challenges to come., and not just the challenges that come with autism. Our families also cope with illness (including life threatening or terminal illness), aging, eldercare, unemployment, natural disaster, etc. that are not chronic but can take an added toll. And supports that are available to other families under these circumstances can be hard to access if there is ALSO a child with autism.
It is hard to predict what will happen with an individual child, since development can take unpredictable turns, and also the types of opportunities that will available when “lopsided” individuals, or individuals with global disability, mature can be difficult to predict.
Hopefully, your S will be one of those with a better outcome than most even if it turns out that he will face lifelong challenges.
However if/when your S1 and family hits a rough time again, particularly because in one way or another your S does not “fit in”, it can be helpful to have a backlog of good memories to draw upon that have nothing to do with school or therapies - for both his sake and your own - whether memories of going out to dinner or a movie on a whim, or ransacking a drawer of odds and ends to try out an invention, or hours spent coding a new game, walks in a park or trips to a museum, afternoons picking out books at a library or lazing in a pool or cooking a gourmet meal or putting together an electronics project, or learning to visit a museum and put together a story from the exhibits, and so forth. These could be activities that typical children enjoy also, but that your S will not experience with typical children because he is not invited, or activities that typical children would regard as “work” rather than “fun.” (And, yes, I think a certain amount of “staging” might be involved for these activities that might seem to happen on a “whim” and that you are being proactive in doing this as well.)
So, I wouldn’t put up too much of a fuss if there is no direct educational or therapeutic purpose to time your S1 spends with your H, especially if it gets them both out of the house to have fun, and gives S1 experiences to share with others and return to in memory if times get rough.
Thanks again for all of the feedback.
@frazzled2thecore, that is a good point about friends. As I mentioned in my post about my D’s childhood, she didn’t really have friends until fourth grade. I didn’t want her to have NO friends, but you can’t make other kids like or play with your kid (heck, she also didn’t like them or have the same interests they did). So sometimes I took on the role of “friend” more than a parent might. It just seemed like the best thing to do for her mental health. I accompanied her deep into Harry Potter trivia (just try me!), LOTR trivia, raptor and insect passions, stuffed owl tea parties, dabbling in chess. We ride bikes, cross country skiied, played tennis, and just hung out a lot. OP, if your kid doesn’t have real friends his own age, something to consider is that you and your spouse may be the best friends he has. Take time to do things he considers fun with no more agenda than just enjoying each others’ company and doing something fun. I think my D looks back on those parts of her childhood very fondly, and not so fondly on her school experiences. Every kid needs people to have fun with.
@intparent @frazzled2thecore the “be a good friend” idea resonates. I really enjoy spending time with S1. He is a thinker and a seeker. He really loves talking about ideas, drawing ideas and building with legos or other materials (once he made a fully working paper baby carrier for his S2’s stuffed monkey including ‘fittings’ on S2 to optimize the design). I also think relaxed, non-academic time offsets the time we must spend on academics.
S1 gets poor grades at school. Very poor grades. He rarely scores above 50%. Some tests are 0. (S2, same school, one grade lower aces everything). Same thing happened last year (poor grades). I tried to get the school to hold him back in first grade but they felt that it was important for him to stay with his age group. So this year (second grade) he has started refusing work. Writing is a nightmare.
Example. Say there is a story about a boy saving his allowance to buy a bike. A question might be: “Why didn’t Robert buy ice cream from the corner shop after school with his friends?” A typical 2nd grader reply. “He did not buy ice cream because he wanted to save his money. He wanted to save his money because he wanted to buy a new bike.” Even this reply: “Because he is saving his money for a new bike.” would get full marks. S1 will simply write “bike.” If prompted to write more, he might rip up his paper.
Here is an example of his dictated writing, “I think it is not possible for robots to replace humans because robots can’t live by themselves without the help of humans. Robots are made by humans, are programmed by humans and controlled by humans. Robots help humans. Some robots work with radioactive materials and some robots go places humans can’t go because it’s too dangerous, such as Mars.”
Obviously we will continue to try (recently-approved para professional support, tutoring) to support his academic work but at some point he can’t have failing grades and simply get passed on the the next grade. I’m pretty confident he would not be refusing so much work if he were a first grader. We’re nowhere near the end of the school year but this is on my mind. We get weekly reports from the school on academic progress. Every week S2 is “exceeding exceptions” and S1 is “not meeting exceptions.”
The school is doing everything they can to make him feel loved and comfortable. But they do insist he is held to the same expectations as all of the other students, like writing full answers to reading comprehension questions. S1 also does very poorly on math tests. Slow, mistake-prone. Usually scores between 20-50% on math tests. Obviously we have more options and less panic since his is not a 9th grader or a 6th grader. Being highly verbal is great but I don’t want him to become one of those kids who seems very bright in person but who does miserably in school. We seem to be firmly on that track.
This should be addressed in the IEP. An individualized education program means just that.
My son had a 504 rather than an IEP. This was in high school. It still was an issue for some teachers that he was not supposed to be penalized for doing certain things his way but it was in the documentation. The social worker at school was tremendously helpful in “running interference” for us with these teachers.
Is handwriting an issue? My D started doing better at writing when allowed to use a computer. She was still WAY too concise sometimes (I understand the “bike” response on paper, but the elaborate dictated response perfectly!). She just couldn’t see from the reader’s point of view that more information and context were needed. Once she said to me, “Why do I have to spell it out for my teacher? My teacher already knows the answer!” It seemed to be a great revelation for her when I explained that the point of the assignment was to show the teacher that SHE knew the answer. Like I said, something you probably don’t have to explain to a neuro typical kid… My D was above grade in vocabulary (way above) and read well once she started (a little late), but her writing lagged really until high school.
Her school was pretty flexible with small classes. I remember you posted about your son’s school before. My kid would have done poorly in such a highly structured environment.
Have you looked into schools that specialize in his condition and where they can offer extensive one-on-one instruction? It seems like elementary school is the time to seek that out, with the hopes of having him ready for a mainstream school by middle or high school.
There are no SN schools in NYC that offer grade-level (common core) academics and umpteen btdt friends have suggested that ‘catching up’ is next to impossible once you reach a certain level. Despite these warnings, we tried the “top” program for ASD kids in NYC for K (extensive admission process) and S1 sat in a beanbag for a year and made little if any progress reading. I love him and I’m a good mom but I’m not a professional educator. I do not want to homeschool (or shadow homeschool) S1. Also H also fits the profile for Aspergers so it is a very challenging family environment. Homeschooling would push us all over the edge.
The school LOVES S1 and is working incredibly hard for him. He’s made astounding academic progress on all fronts since matriculating. It is structured yes but it is also loving, nurturing, supportive and fun. All and all the school has been a lifesaver for me. But S1 does need to do much better academically. Once we have his para sorted and settled in, we will likely have a meeting about grades so I can get a better sense of their deep game.
OP - It is very upsetting to me that your S is being given failing grades and is reacting in frustration to prompts, especially since it seems that he does understand the questions.
While it is promising that the school has gotten funds to hire a para pro, I would also insist that the para pro receive training even if they have some experience with ASD’s. If I were working as a para-pro in a school setting (as do quite a few mothers who have raised ASD children) I would insist on regular access to workshops, and to a behavioral psychologist.
It also bothers me to hear that a first grader is spending hours on homework, if I have read things correctly, without any improvement in ability to meet school demands. It tells me that the child is not working at a productive level, and is spinning his wheels. Do you think he would do better with more challenging material, easier material, or material presented in a different type of format?
Agree re training the para.
As for the work load, it only takes extra time because of all of the fussing and lack of persistence. Pages are crumpled, pencils are snapped in half, he dives under the couch, etc. Standard Aspie meltdowns. I pay attention to detecting skill gaps but I’m not influenced by the meltdowns. If I were he would never get anywhere in life. I was a very responsive mother when he was an infant/baby. Whole attachment parenting thing, co-sleeping, nursing on demand (apart from when I was at work 4 mornings per week) and we ban all electronics (still do). When he was about four I realized that I would have to ‘drag’ him though things he did not want to do. Learning to read was Epic Battle Number One and we got through it. It was ugly and protracted but the boy LOVES books and has astounding comprehension.
So my attitude is, OK. This Is Parenting. Fine. Game on.
His making progress - that is great. But he is not on track to catch up to where the classmates are. That is the challenge.
That’s wrong. He should have accommodations appropriate to his needs.
That doesn’t mean holding back on academics. It means the school giving the support needed to enable him go get the intellectual benefit of the academics – without frustration. The disparity between his written work and oral dictation make it likely that the problem is somewhere in the writing process. It could be physical, it could be neurological. Some things are mysterious - but many 7 year olds still have small motor control issues that make writing very difficult, so it might be good to consider working with an occupational therapist to start.
Here’s the problem: “bike” is the right answer to the question that was asked. He understood the question, he knew the answer. What he didn’t do was write out a sentence: but why should he? Does he know why? And what is the barrier? Do you understand why it is difficult for him to do more? Does his teacher understand why?
He can’t learn while he’s frustrated. He might do better if expectations are modified so that he can improve steadily and gradually. And maybe the teacher is going to have to be very specific about expectations. That is, instead of answering an open ended question that says “why?” – maybe your Aspie’s son needs to have an explicit instruction: “Write a sentence with at least 5 words that explains why”. That could be specified in a separate rubric or contract between teacher and student: example, each question should be answered with a sentence with at least 5 words.
If the expectations are at whatever level is necessary so that your son can complete homework without frustration, they can be gradually increased until no more accommodations are needed. And your son will probably appreciate a very explicit rubric that tells him exactly what he needs to do to get an A.
I still see a big disconnect between the external expectations for this child and the needs that are part of his diagnosis.
You might want to rethink this one.
I get the sense you think his symptoms can be dealt with if you just Solder On and Take No Prisoners. It doesn’t sound as though it’s working well, though. Really, getting him under emotional control and to a stable place and able to engage with people to the best of his ability is FAR more important than any factoid you might read to him in a museum. Is it safer for you, perhaps, to focus on academics (because that’s something you “know”) than on emotions, which are big and wild and untamed and scary?