Our Story

I’ve gained a lot from hearing the stories of other families dealing with similar issues – their challenges, their gains and setbacks, their perspectives.  Just knowing that others are also “climbing the cinder cone” is a help.

In that spirit, I’m sharing the bare bones of our story below. It isn’t compelling reading by itself; each sentence has a whole back-story of its own! But it lets you know what we’ve dealt with, and why my blog posts will hit on some topics but not others. Some of the terms may be unfamiliar to you, but they are probably discussed in some of the posts.

We adopted both of our sons as infants, three years apart. “Nathan” was an independent adoption, and “Alan” came to us through the County fos-dopt program.

Nathan was not an easy baby – irritable, wired, colicky.  He hit all the developmental markers on schedule. He was diagnosed with asthma at age 2. He was (and is) smart, athletic, imaginative, and handsome.  Preschool went pretty well, except the teachers asked us how we got him to sit still.  (The answer was to read with him; he’s always loved a good story.)

Nathan at age 2

One of his early teachers in elementary school hinted that we should have him evaluated for ADHD. The results suggested he was near the borderline for the diagnosis. The possibility of ADHD came up again in late elementary school.  Our pediatrician referred us to a sensory integration therapy program. The occupational/physical therapist in that program gave us a list of resources, including a family counselor who has been invaluable in giving us personal direction as well as knowing a lot of the resources in our community.

Throughout his elementary school years Nathan had a few good friends, but his behavior was sometimes odd and his reactions were intense, leading to a lot of teasing and bullying (which he told us about occasionally, in passing.) During these years Nathan was involved in gymnastics, then karate, then youth circus (where he learned to ride a unicycle.)

In sixth grade, it was clear Nathan was underperforming in school. He started taking medication for ADHD. A thorough educational assessment revealed dysgraphia, some eye-tracking issues, and some sequencing and language processing deficits.

Middle school started well (A’s and B’s, and good friends) and ended badly (several D’s, strong negative opinions about life.)  Nathan had always loved video games and Japanese anime, but during this time they became obsessions.  He also began writing and drawing a LOT, with pages scattered everywhere on his bedroom floor.

For his first year of high school we got Nathan into the AVID program, hoping that being in a group of peers motivated to attend college would help. It was a mistake; he failed 5 of his 12 classes.  (Nathan was so determined to fail that sometimes he hid assignments under the sofa, after I had watched him place them in his folder in his backpack before school!) He had to leave the AVID program.  A “504 plan” of accommodations was created for Nathan.

Sophomore year, in “regular” classes, didn’t go much better despite a heap of private tutoring (where they promised to ignite the joy of learning) and visits to a psychiatrist. This was also the year Nathan had a few “rage” incidents. In the worst one, he climbed on to the roof of our house, asked his brother to bring him a knife (he didn’t), then jumped down and ran away.  As we were out looking for him, he called me from home. We hurried back to find him in the kitchen holding a large knife.  I wasn’t sure what his intentions were, but he didn’t seem to be rational. After a few tense minutes of talking he put the knife down, and 20 minutes later he was back to his usual self.  A few months later, he told me for the first time that he was considering suicide.  (The threat of suicide has been an undercurrent ever since.)

Toward the end of sophomore year we again met with the school psychologist and had Nathan evaluated for special education.  The resulting “IEP”  placed him in a special day class for students with emotional disturbances.  This was at a different high school, a few miles further away from home.  And so, the last two years of Nathan’s high school career were in a small classroom with a teacher and an aide and kids with all kinds of emotional problems (including violent tendencies.)

We still looked at alternatives: charter schools, independent study, private schools.  We weighed the trade-offs for each one and ultimately decided not to make another change. We tried a new psychiatrist, at whose suggestion we put Nathan in a 3-week outpatient program at the local mental health facility. This was followed by weeks of follow-up group counseling and family group therapy.  No improvements.

Considering his outlook and his mental health challenges, Nathan didn’t get into all that much trouble outside home.  A few detentions, suspended for fighting once, banned from our local Blockbuster after swinging his scooter at someone who taunted him in the store – and that was about it. He maintained friendships with his elementary school buddies.  In senior year he didn’t object to giving horseback riding a try, so he had several private lessons. The instructors praised his natural ability, but Nathan took little pleasure in it and eventually stopped.

Nathan managed to pass the high school exit exam and just barely squeaked through to graduate, with a diploma, on time.  We tried to use “transition” resources for young adults with disabilities, but Nathan had no interest in getting a job or learning a skill.  A few months after he graduated, we found him an apartment locally. He didn’t want to move out, but gradually adjusted, even though he didn’t have a TV or computer.

In an agonizing decision, we opted to cover his living expenses during this time, concluding that this would be a better option for him and society, as opposed to homelessness.  Eventually we won SSI benefits for him.

Nathan has had a long list of diagnoses over time, but the ones that are agreed upon and were presented to the Social Security Administration include ADHD (now he’s less hyper, so it’s more like ADD), Asperger’s, and severe chronic depression (or, he’s bipolar but stuck in the depressive stage.) The Asperger’s diagnosis was later replaced with schizoid personality disorder. Now we think he has both.

Nathan has been exposed to various job placement programs, continual psychiatric care, and counseling for many years. Although he’s less vocal about it than in the past, he hates himself, society, and almost all people he’s ever met. He won’t try any therapy other than talking to counselors.  For years he did not want to work; recently he has started looking for a part-time job. He does odd jobs around the house and for the small company his dad works for.

He gets exercise by walking to places like the YMCA, the library, and the bookstore. Nathan does his own grocery shopping and laundry. He’s much easier to get along with than he was as a teenager. His landlord has not received any complaints from others in his building, and he’s never been in trouble with the police. Much of his time is occupied by writing novels and fan fiction.

Alan’s story is different. He’d had a traumatic birth and had some delays in early infancy, but luckily was placed with a foster family who specialized in medically fragile infants.  His foster mother got him into physical and occupational therapy programs, and by the time we met him he was nearly caught up on developmental milestones.  He was placed with us at 7 months. By the time he was a year old, no special treatment was needed.

Alan at age 2

Alan was an easy baby and a good kid through elementary school.  He was very personable, and had a good relationship with his big brother (no easy task!) In middle school, he ran into some typical problems: a couple of suspensions for fighting, a few calls home about items in his backpack he shouldn’t have had.  Still, he responded well to one teacher who went out of his way to mentor kids, and was saying all the right things about what he’d do in high school (and not be like his big brother).

However, the high school years were indeed rough. He did poorly in some classes, but used excuses, lies or promises to get us off his back.  He had one major disciplinary action in freshman year, but instead of being sorry for his mistake he lashed out at us. He sometimes said he had ADD, which we believed was a real possibility, but when we took him to get help he would deny it to the professional (and then lash out at us). Again, we watched as our bright, capable son failed classes pretty much on purpose.  Alan assigned blame elsewhere and rarely acknowledged having any responsibility for his situation.

On the plus side, Alan made friends quickly, and most of them were good kids.  He was basically cooperative with our house rules.  By his choice, he saw a psychologist once a month. Most of the adults he meets find him charming.

In his senior year, after years of raging about how awful school is, he did a great job as an aide for a secretary to a vice-principal, and decided to be in a group that helped with school functions. Although it was down to the wire, Alan graduated from high school on schedule. He chose to go to a technical school out of state.

Alan completed the one-year course and moved into an apartment in our town. He decided he doesn’t want to be in the field he trained for after all. His employment history is spotty, with only a few part-time or full-time jobs that lasted four months at most. He’s had a pattern of changing his mind about what his goals are, and of letting setbacks or irritations derail him from whatever the current goal is.

With a persistence we hadn’t seen in him before, Alan jumped through many hoops to apply for and get accepted in a local program that helps unemployed youth. He’s also gotten help from the Dept. of Rehabilitation, which allowed him to take classes for training in a different field. Unfortunately, his job in that field didn’t last long either. He’s been getting help from the local job center, and is looking into a program at community college.

For awhile he saw a psychiatrist and a counselor for ADHD and depression. He doesn’t think meds or therapy ever did him any good.

Alan’s maturity has increased, and he is regretful about choices he made as a teenager.  He’s also recognizing his self-defeating behaviors and desperately wants to change, but doesn’t know how.

 

6 responses to “Our Story”

  1. Sally Cook says :

    Reading Nathan’s parent’s story, it made me cry. The story is almost exactly what I have been going through. Finally someone that understands. Adhd, asthma, depression, severe social anxiety, OCD and now Schizoid PD. I would love to keep in touch and find a support group. I am currently in a support group for families with someone that has OCD and it is very helpful.

    Like

  2. Sally Cook says :

    I forgot to mention Asperger’s.

    Like

    • janet565 says :

      Thanks for your comments, Sally! I think it is really important to find others who have been through the same things – it makes such a big difference. I’ve started a draft of a new post, which shares some positive news – and that is also important to hear: to know that things can get better after years of hopelessness and confusion. We can absolutely stay in touch, and let us know if you find a local support group that covers kiddos like ours. Best wishes —

      Like

      • Sally Cook says :

        Thank you. There is no support group near me. I travel almost 2 hours to go to and OCD support group. I have so many questions and maybe I can find some on this website. I have only just because to read it. I have a question. When you say that they have replaced Autism with Schizoid PD and you think he has both. My therapist read that you can’t have both but I wonder about that with my son too.

        Like

      • janet565 says :

        Sally, the Aspergers vs Schizoid PD question is a confusing one. When I wrote the blog post, I presented what Nathan’s therapists and the common information out there on the subject said: that it’s an either/or situation. Several readers of that post pointed out some believe the conditions aren’t mutually exclusive after all. To be honest, I have to go back and read through all the comments to clarify my thoughts. This is a topic that probably deserves more follow-up discussion! Hope to provide that at some point. Also, we should probably poke around the Internet to see if there are online support groups for individuals with multiple diagnoses, and if not, what it would take to set one up – there must be a way. Not sure how long that will take me (lots going on in “real life”), but will give it a try…

        Like

  3. Franklin says :

    Other then neuroatypical neurotypicals love anime

    Like

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