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

Parent Cafe
21

Guilt is not the answer here, and I will tell you that it gets in the way of productive thinking.

If you need a moment to release your emotions, choose a quiet time away from your family. A friend used her shower time daily to cry and get it out of her system, so that her down’s syndrome son with leukemia did not have to live in a guilt-ridden atmosphere.

If you had time to read the forums here, you would see the phrase “love the child you have” over and over. So many parents have shared their experiences with kids failing at college due to mental health issues, with kids not even attempting college for various reasons, and every odd situation in between. Kids take 8 years to finish college, or find success in other paths that don’t include a college education. You don’t get to pick your child, but you do get to choose your attitude. You and your spouse can work together to love both your kids as they are, and make choices that make the best sense for your family.

Our family has learned over the past few years that we can go outside the box when making decisions for our child. We joke that we are so far outside the box that we can’t even SEE the box anymore. And that’s okay. We are reaping a bit of joy right now as an educational change is making a difference in our son’s happiness and stress level.

Don’t dismiss the idea of making a complete and drastic change for your family. Consider all the options, even the seemingly crazy ones. Take a family vacation to Colorado before taking the job, though. Find a way to expose your child to horses and make sure there is some interest before using that one thing to make a complete change for your family.

Consider taking time to focus on getting the best diagnosis and treatment plan for your child, and don’t worry so much about his formal education. He must be miserable right now, with not much self-esteem left. Work on stabilizing him, loving on him, and do consider medication. I HATE medications, I hate them for me personally and for how the medical world throws them at children so easily. But it sounds like you have tried so many things, and I encourage you to give this a try as well. Remember that you are the parent and you can make the final decisions about leaving him on a medication long term.

Grieve the path that you know your child will not take, and then make a list of all the joys that your child brings to you and your family. Type up that list so you can see it daily, and remind yourself it is a privilege to be a mom to both your kids.

Sending Hugs your way…

22

Sometimes I think the people on CC are the best group of people I know.

And I don’t even know any of you in real life.

23

I think I would carefully weight the use of medications vs. what the scenarios are sans medication. I would personally be more inclined if there are aggression issues because those in my opinion will hold him back far more than hyperactivity or other things going on. Many people have their kids in their 30s…all of mine were…do NOT blame yourself. Hang in there, find a psychiatrist you trust and consider what they say regarding medications. Focus on what can be and not what might be or what might have been. Good luck!

24

I agree with that, eastcoastcrazy, so gentle and supportive.

There may also be an option for mentoring, which is a trained outsider who works with the child on various issues, sometimes academic, sometimes social, and usually personal to his needs and skills. But on a more casual basis than training or therapy, per se. For many, it’s not only a help for their child, it’s a chance for the family to share some of those extra efforts with someone qualified.

Often these come through a social services agency and I believe costs are either covered or income-dependent.

Don’t blame yourself. Best wishes.

25

Yeah, the blaming game doesn’t help at all. My son went from majoring in biomedical engineering to living in subsidized housing. He’s on Social Security and doesn’t work at all. I could get all down and out, but I choose to be proud of him for living independently with minimal oversight. Those are the cards we’ve been dealt.

26

Really appreciate all of the feedback posted here and those of you who messaged me privately.

It is felt – your care and good wishes.

The TLC here has been heaven sent.

27

Nature works in funny ways.

I don’t know the first thing about special needs or special needs services and I am pretty sure, if I were the OP, or the father of the OP’s child, I’d have serious guilt feelings too. Some people like to hide things like that. I think being open is more healthy and I am not sure either option would solve anything. I’m sure I’d obsess about it.

Zika and Zika funding has been in the news a lot lately. That virus seems particularly cruel since it affects the unborn child in females and can lay latent in males and will affect the unborn child many years later when the male passes along his genes to a female. Society will have to provide for these children. They, and there parents, are completely innocent. We will all have to learn to love and accept more.

My hope would be to have more special needs children in regular schools and classes and offices and so forth. Integrate them into the regular classes and teach people to accept them as they are. I think somehow by separating people it makes things worse.

To the OP, whatever dreams you had while the child was in vitro, I doubt had anything to do with it. Pursuing your PhD was the right thing to do at the time. You had nothing to do with it. It is roulette. Your child was chosen by nature. One in a thousand or one in ten thousand. I am not a religious person but I think, in some ways, God choses people strong enough to deal with this. If God had chosen me I could not have handled it. God choses people way stronger than I am. I hope you can adjust to “the cards” you have been dealt. I wish I had something more useful to say.

28

I had to go back and read it again.

“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.”

Wow. Ma’am, you, and all mothers, are champions. I am floored by the whole thing. I think, if it was me, I’d beat myself up over and over and over but then, eventually, I’d realize it wasn’t my fault. It was no one’s fault. I’d find some sort of calm and I’d figure out should be done now. I’d let the past go. The other advice and kind words on this thread are beautiful.

29

I’ve posted this before, but I read one statement that has really helped me as I deal with our schizophrenic son. Instead of asking, “Why me?” I ask, “What next?” It’s very empowering and helps me to move forward.

30

@MaineLonghorn - I have found this helpful as well, but as a parent with over two decades of experience in the autism community, I think it can be very difficult and confusing to know what to do to move forward, especially in cases such as OP’s.

Virtually any direction a family takes will involve tremendous investment of family resources, and there will be an uncertain ROI. Over the years, families and children (who can also blame themselves for their difficulties) can become burned out and even fried. Extended families and neighbors, and religious communities, can also differ wrt whether they are supportive, hostile, or MIA.

It is my impression that OP has attempted to move forward over and over again, during the years since her S’s diagnosis, only to hit dead ends, and this is where she is having a problem. Sometimes in addition to self-blame for having caused autism, parents blame themselves for having made poor choices among the many options for draining a family’s resources to find help, or when an approach that has worked well for another family does not work at all for their own.

My own feeling is that it is time for OP to start working with a professional advocate, or to find a new advocate if she has already gone this route, in addition to continuing to support her child. In our suburban district, many families have discovered that they need to keep an attorney on retainer in order to access adequate supports both from schools and community agencies.

31

@frazzled2thecore, great points.

I like the idea of a professional advocate.

I had a hard time figuring out what to do, too, since I knew NOTHING about the mental health system. That’s why I reach out to other parents going through this. My daughter and I are speaking at the NAMI Texas conference in a few weeks, to share our stories and ideas of how to proceed when mental illness strikes. I wish there were some kind of mentor system in place. I didn’t even know what I didn’t know. It was bad. :frowning:

32

S1 in a nutshell.

When he feels uncomfortable he blames the people around him, people in general, the world, even the laws of physics. And lots of things make him feel uncomfortable.

For example, the rules of games.

When not reading, riding his bike or doing things he enjoys, he is often angry at things outside of himself. I’m a top recipient of that wrath. So are teachers.

Anyone who has to apply and enforce The Rules.

33

The best thing you could do is see a psychologist who specializes in the disorder (aspergers). Don’t go to a psychiatrist, as many don’t know much about the condition (I know as I am in the medical field). A good psychologist will refer you to a good psychiatrist. The most important thing is to see a specialist.

34

@MaineLonghorn If I might ask, what happened to your son?

I ask, because the same happened to me. I majored in biology, took a job, got fired, and ended up working in wal mart as a cashier. I got treated for severe adhd and anxiety, went back to college to improve gpa, went to medical school, and am now a resident physician.

I say this to illustrate the extreme importance of appropriate medical care. To be honest, I waisted a lot of my life becuase I did not receive the appropriate medical treatment, and am still, to this day, resentful of my parents for not providing it to me. They are very wealthy, so that was not a problem.

I would say to the OP: Please get rid of your aversion, if you have any, to pharmaceutical intervention. A pill can really change your