Profoundly asymmetrical development (or "what is going to happen to my beloved 8yo?)

Parent Cafe
1

Last month, our 8yo aspie was kicked out of his school, a mainstream public charter (the second school he has been kicked out of, the other was a Montessori - he was kicked out at age 4). He started a public special needs program for children on the spectrum a few weeks ago but he has had a very rough transition and with the school’s urging, we pulled him out to undergo a fresh neuropsych evaluation (a three day process, one more day to go).

I’m in tears just getting on the phone with the evaluator. Autism, ADHD, mood disorder all evident. She said his emotional regulation is at the toddler level, developmentally. Because he can be aggressive, he is not likely to be eligible for private special needs schooling. As if sensing my despair, she quickly added that intellectual “he is a genius.” As his mother I can assure you that he is not a genius. Like many aspie kids he has a deep understanding of preferred topics, and for my son it happens to be many topics. Maybe that dazzled her. Or maybe… He’s previously-tested verbal IQ (two years ago) was 139 so maybe this is what she was referring to?

So S1 is probably going to be gently kicked out of his current special needs school (technically offered a 12:1:1 placement with kids of all sorts of ranges of abilities, medical conditions and health issues which we will not accept). Leaving us… ??? He has ABA therapy 10 hrs per week, he has CBT and social skills both weekly. But that is all 1:1. He cannot work independently - has aggressive meltdowns as soon as he hits a rough patch in doing any school work.

I’m wracked with guilt. My stream of consciousness goes like this.

“I shouldn’t have gone for the PhD, I wasted my 20s and let my eggs rot. Now the kids paying the price for hatching from a 33 year old egg. It was that bad cold I had in the second trimester. I dreamed the baby was covered with spider webbing - it was my consciousness interpreting the baby battling the virus and the immune system mucking up the delicate development of the limbic system. I should quit my job and homeschool him. We’ll do Moocs. But that’s not fair to S2. I’ll be so exhausted. He needs me too. Therapeutic boarding school. I could NEVER… Wait. H got that job nibble from Colorado. What if we moved to Colorado? We could live on a ranch and the boys could ride horses. They say horses are great for autistic kids…”

I’m posting on CC because all of my friends are only parents of young children. What do I need to do to help this kid? I’m terrified that he’s going to end up zonked out on heavy psychotropic medications living in a group home vacuuming up popcorn from movie theaters 10 hours per week. His dream is to work at SpaceX.

I don’t want to quit my job, which is at the American Museum of Natural History and could be a HUGE help to him someday (both AMNH specifically and just being part of the museum world in general). But I just don’t know what to do. He’s failing to thrive at age 8. Isn’t it my duty to swoop in???

2

contact your local public school. Give them the info they need…public schools are required to provide special instruction if needed.

Private schools and charter schools are not required to keep kids whose needs they cannot meet…but your local,public school is. Contact the director of special services…and schedule a meeting.

3

I know in the past that you have been opposed to medication, would you consider it at this point if it could deescalate some of the behaviors enough that he could learn and be around other children especially now that a mood component has been identified? I’m not suggesting to “zonk” him out on psychotropic medications, but if there is a biochemical component , medications can be helpful when a child is properly assessed by a child psychiatrist and closely monitored . I know medications are a very personal decision , but as someone who has worked with children with autism, ADHD and mood disorders , I have seen medications help tremendously in conjunction with psychotherapy , family therapy and social skills training. He is only 8. It is still early enough to make some positive changes. Good luck to you and your family. It’s very clear that you want the best for your child.

4

I don’t have any suggestions – my kids did not have these problems – but I can really hear how much you are suffering and how much you want to do right by your kid. I wish you the best of luck negotiating for him. He’s lucky to have you on his side.

5

I second thumper1’s advice. I know that specialized schools seem ideal for kids with special needs, but they are not required to, or simply do not, have the range of services to meet their needs.

You may have to do battle with your district to get what he needs, but you should start there.

Oh, and the horse thing is true. My 18 year old autistic nephew loves horses. They have been a bright spot in his very difficult life, so don’t rule out some type of horse therapy for your son. He might find a competence there that allows him to thrive.

6

@carolinamom2boys I’m as terrified of meds as ever but we’ve indeed consulted with a psychiatrist and she is recommending guanfacine. Everyone is suggesting this course of action. All of the therapists. I feel like it is a mark of my failure as a mother that my child has to be drugged into some kind of stupor to get through the day and I GET this a poor framing and I’m seeing a therapist about it but there you go.

7

You should not need to “battle” with your local public schools. There are a lot so students on the autism spectrum in the public schools. Most districts have programs and staff to help with the educational programs for these students…

Contact your local public school special education director ASAP.

8

@Aspieration, I feel your pain about meds, but they can be SO beneficial. My 24-year-old is able to live in an apartment (with on-site staff available 24/7, if needed). He takes risperidone, an anti-psychotic, and lithium. He would not be functioning well if it weren’t for these meds. I’m glad you’re seeing a therapist.

It might be helpful for you to take a NAMI (National Alliance on Mental Illness) Family-to-Family class. They are twelve weeks long, and free. You’ll get a ton of good information, coping skills, and problem-solving techniques. They will drill it into your head that IT’S NOT YOUR FAULT! You’ll also meet other parents in your shoes, or worse. The phrase used most often to describe these classes is “life saving.”

9

I’ve been on anti-depressants since my very early teens. Far from blaming my parents or thinking of them as failures, I thank my lucky stars every day that they got me the help I clearly needed. There isn’t a doubt in my mind that they saved my life.

JMO

10

@Aspieration I don’t believe that a child needing medication to function is an indication that you are a failure as a mother. If he required insulin ,cardiac medications or cancer medications to function, would you consider yourself to be a failure as a mother . When someone is properly medicated , it is difficult to even tell. If someone is stuporous or sedated, they are not properly medicated . There is a biochemical component to his condition which may or may not respond to medications . The only way to know is to have a medication trial . If you decide to go that route, find a good child and adolescent psychiatrist to properly evaluate and monitor his response to meds. It is a hard decision. I watched my cousin struggle with bipolar and Aspergers for years. She was finally properly diagnosed and medicated by an amazing psychiatrist , and she is thriving . She completed college, studied abroad and now works in the film industry. It takes a multi systems approach. One single treatment is rarely effective with complicated cases. I truly hope for the best for you .

11

I am so sorry. I have a 9 year old son with autism/Asperger’s. He was diagnosed at 5 years 10 months. Life was very difficult from the age of 3 to maybe 7 or so. We have found the public school system to be rather useless. They can handle my child just fine if I don’t care if he’s every really educated and I’m ok with him being disabled for life. We pulled him out of public school and put him in an ABA based private school program in kindergarten.

As far as ABA it really needs to be rather intensive to work. We spent years with 20-30 hours a week of at home ABA. My son is also a genius. We have worked so hard and so intensively that last year we really started to believe he was ready to mainstream. What we did was unusual. We convinced our private school to mainstream him for 3rd grade. We had a full reevaluation done at UCLA. His level on the spectrum had changed a ton, behaviorally he doesn’t even test on spectrum anymore, he still has mannerisms, sensory sensitivities, and other stuff, but he functions behaviorally in a more typical way after so much ABA. He is intellectually gifted, he also has dyslexia, and ADHD.

Nearly 90% of Asperger’s kids have ADHD symptoms, it’s just part of the deal. We did an intensive (read expensive) summer reading program to deal with the dyslexia and hoped to bring his reading level up two years, we gained three years. We did medicate. The medication they are recommending for your son is very mild. It is no failure to use it. We had our doctor prescribe 30 hours a week of ABA which we receive through our medical insurance (mandated coverage state). I use those 30 hours a week to have a one on one therapist with him at school. I told you, it’s unusual. No one quite thought it would work or I could pull it off. It’s working amazingly well. School’s been in session 6 weeks, my boy has straight A’s and B’s. We’ve had very few behaviors. Everyone is talking about him potentially not needing the one on one for very long. He’s with typical kids and modeling their behavior. He’s happy and intellectually stimulated.

We attend a very rigorous college prep academy. I am spending an hour to two hours working with him each day to make sure he goes into class confidently, but that’s worth every bit of my time. When our son was diagnosed we decided we would do anything, spend anything, we would research, we would advocate for him, there would be no barriers to his success. He’s the youngest of four, it hasn’t been easy for anyone. Having therapists in your house than many hours a week is no fun. We spent years not being able to eat in restaurants, not being able to take him to birthday parties, so many changes to our family they are too numerous to name.

My child is a joy, he is so happy, so, so smart, he has so many gifts to share with the world, we just had to uncover them. He is a blessing to our family. I truly believe he will go on to get a PhD, work with numbers, engineering, physics, something. I’ve got everyone else around him believing it too. I had to believe it first. I have had to be a mama bear for him. Everyone in our life has the choice of helping or getting the fuck out of my way, plain and simple. Educators, therapists, family, friends, get on board or get out of my way. This is not your fault. I’m not sure what’s causing the epidemic of autism, but it’s something. I think it’s genetic predisposition combined with environmental triggers. At any rate, it’s not because you are a bad mom.

12

One more note, our pediatric developmentalist did a genetic test which reveals which medications will be metabolized best by your child. I highly recommend it. It’s not so much of a guessing game when you know you’re choosing the right medications for their unique little bodies.

13

I don’t think that it is fair to label the public school system as “useless” as what is provided through the public school system is vastly different depending on the school system . I’ve seen many kids thrive in a PS system with the right services in place. There is no one size fits all approach .

14

I didn’t say it was useless, I said we as a family found it to be rather useless. Our son was placed in a high functioning autism kindergarten class with 17 kids, one teacher, two largely untrained aides. There was no academic standard whatsoever. They lost my son at least 10 times during that school year. He would get overwhelmed with the stimming and screaming in his classroom and take off. Several times he was missing for 10 minutes or more. One time he was found hiding in a playground ball box, they didn’t notice he was gone for several minutes. He could have suffocated. Another time he ran right out the front doors of the school and into valet traffic in the parking lot. I did not find it to be a safe, therapeutic, or educational environment. I pay a ridiculous amount of property tax in a very nice suburban school district. What our school district had to offer wasn’t good enough for my son.

15

I have a sibling on the spectrum, with ADHD behaviors as a kid. Back then, in the '60s she was labeled with something a little less clinical. Meds, ritalin if I remember correctly, was recommended for her, but my mom tried every ‘natural’ approach in the book instead. Who knows, they may have done some good. Over the years, however, I have so wished she could have had the meds, to get on top of the behaviors, which would have given her a little more ability to relate to others and get some positive social feedback and feel better about herself. She is great now, advanced degree, good career, but still struggles with mental health issues.

16

I know absolutely nothing about the problems you are dealing with. However, your post suggests you live in or near NYC. Of course, you should deal with DOE, but…I’ve heard good things about this school. http://www.thechildschool.org/page.cfm?p=128 It’s private, but from what I can figure out, most families are able to get NY State to pay some or all of the bill. Website says:

It may not be the right place for your S; I don’t purport to know. However, I would contact the school and talk with the personnel. If it isn’t the right place for your S, I think they may at least be willing to suggest other avenues to investigate.

I don’t know if it would work for your S or even if the staff will give you any help. If not, try investigating some of those on this list.http://www.p12.nysed.gov/specialed/privateschools/LD.htm I wouldn’t suggest you accept someone’s assessment that you can’t get a private school placement because he’s “aggressive.”

17

I understand your guilt. This isn’t my post so suffice it to say that my kids have issues as well and I have shed many, many tears over my feelings of failure and inadequacy as a mother. All of my kids were born when I was in my 30’s. As a result of their issues, I know alot about special ed laws in NY (my only D parlayed her experiences with her brothers into a masters in special ed).

I live outside the city but I know someone whose child attended The Child School, mentioned above, and loved it. Depending on where you are in the city, you can also look at Summit School in Queens, which takes “behavioral” kids or did 10 years ago when I looked at it for my ODD/anxiety child. Ultimately, I decided to leave him in district because he needed accelerated honors and AP classes more than he needed b-mod at the time, but the program was a good one. I am also familiar with Lowell and Churchill, which don’t take “behavioral” kids. I will say that when I was looking for placements, at various times, for three of my 5 kids, every school I called was helpful on the phone, although they won’t let you visit until the district sends a packet.

If you are outside of the city, look at the BOCES schools. I know a boy who sounds very similar to your son. He is now attending a community college. He is brilliant but can’t access his ability over his issues. However, nobody who knew him growing up would even have thought he’d finish HS, let alone attend college. He attended BOCES schools from 4th grade on.

As for the meds, my suggestion is to give it a trial. Most of the meds for ADHD have a relatively short life in the system. You can give it to him over the Columbus Day three day weekend and see how it works almost immediately. It’s trial and error but the goal is not to medicate the child into oblivion, but to allow them to function on par with neuro-typical peers.

18

My heart goes out to you, @Aspieration , hang in there.

19

First off, I understand the OP’s questioning about the timing of her son’s birth. But I’d like to assure the OP: This is not your fault in any way. Unexpected things happen to everyone, sooner or later. Events with low odds happen randomly to families. Parents of all ages have children with issues that need to be managed.

I am generally opposed to medication for a child who has been diagnosed with ADHD, because I think some of that is normal high activity in a setting that does not provide the outlets for vigorous, unscripted, non-team physical activity that used to be available.

However, particularly in dealing with the mood issues, if I were in your position, I would probably have my son try medication in this case. I think there must be a level that does good, without losing the child’s spark of personality. The fear that you describe seems to me to be a fear of over-drugging. A good physician should be able to monitor that.

20

Aspieration–Is their a support group for parents of special needs/autistic kids in which you could participate? I think you’d find it a good experience. I have a grandson with RAD (Reactive Affective Disorder) and ADHD who is 14. My stepdaughter has gone through some of the very same situations (having to leave one school and find another/trying to avoid medication, etc.); she says the support group has saved her.