Your personal journey after diagnosis

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I thought this could be helpful for parents of recently diagnosed kids. Every journey is different, but perhaps they are similarities to be seen or comfort in finding someone else with a similar story.




Our story:

My son and I were diagnosed at the same time. (Originally, only I was going in for a neuropsych evaluation because of my difficulty with speech made psychiatrist's appointments difficult. I had previously need diagnosed with ADHD and was having trouble communicating with my dr about my true problems. I grew up with dr appointments and was never confused with an NT...there was always some obvious difference).

Anyway, after I got my neuropsych appointment set, I decided to tag on an appointment for my son as well. His meltdowns were getting increasingly difficult to handle and I wanted more tools for them.

The neuropsych told me the diagnoses and it was a relative non-thing. I think I felt relief. I had been worried is be diagnosed with schizophrenia and he'd be diagnosed with oppositional defiant disorder. Hearing Aspergers for both of us was a huge relief. Because we got diagnosed at the same time, we also never felt alone...

A few people who knew my son was doing an evaluation asked later how it went. When I said the diagnosis, many people said, "I'm sorry". I was always fairly surprised by this reaction and it caught me off guard. Eventually, I would stammer out..."I'm not. I'm not sorry.". A few people would want me to talk about my feelings about his diagnosis (these were people who I told only of my son's eval), and I never really knew what to say. I didn't have any new feelings about it. To them, I'm sure I seemed odd.

Over time...how has my reaction to his diagnosis changed anything? It has changed how I feel about how long it takes him to do certain things (and frees me from comparing my two, very different children). I haven't altered my expectations of him in the sense that he gets a different set of rules.

For instance: when a neighborhood kid comes to play, my son must be polite and follow rules just like everyone else. When he throws a fit because the kid got his toy dirty, I treat him like I would my NT daughter (must calm down and regain self-control before regaining play, and make it up to the other child, if needed). BUT, I know that he's more likely to have this problem. So, it doesn't phase me that he needs several calm down breaks (of which he's progressively doing independently) during a play date, whereas the other kids don't really need that hardly ever. He just does. The diagnosis was what helped me be calm about it, but still enforcing the same expectations. Does that make sense?

In all truth, my NT daughter is the one I don't know how to handle!



What were/are your journeys like?

This is a very good idea screen name:

Our story: My daughter was getting in a lot of trouble at school since she entered a new school in grade 7. She was suspended a few times. By the end of that year, they had sent her to program called Reality Check which focused on learning positive behaviours and she was there for about 2 months. It was one of the teachers at the program who thought she might have a mood disorder and I was worried that she would be diagnosed bipolar like her father, so I was afraid to have her assessed. She also got in trouble with the law because she posted really obscene things online to a boy when she felt he was insulting her friends. The school resource police officers tried to get her to realize how serious this was and she still didn't get it, so the same teacher who thought my daughter had a mood disorder now thought it was aspergers. I looked up a definition online and really didn't think this made sense.

Over summer, we had a lot of meltdowns and behaviours I couldn't understand like her hitting herself repeatedly, ranting and screaming and throwing herself into the floor. By the time school started again, I was hoping for a fresh start and instead she was suspended on the second day because she had attacked a different girl online threatening to kill her because she thought this other student had insulted her twin sister. I was finally realizing there was something very different about my daughter and I decided they could assess her. When I asked if the school psychologist thought it was aspergers, she said from what they had described, she didn't think it was.

I was getting call after call from the school while at work and they wanted me to come and get her or find her because she started running. The school police officer finally took her to the children's hospital to have her formed under the mental health act because she knew something was wrong and that she desparately needed help. My daughter had written a sad note about how she should be locked up in a jail or nuthouse because everyone would be better off without her. She also said that her brain made her do things and she couldn't stop. It was the hospital crisis social worker who told me without a doubt my daughter had aspergers.

I was totally shocked and relieved to know there was a reason for my daughter's behaviours. I was so glad to know I wasn't a failure who didn't know how to parent her properly. I also felt a lot of guilt for being mad at her for so many things over the years when she couldn't help it. I read as much as I could over the next few days and told my daughter about being aspergers. After reading the articles from the hospital, I totally recognized my daughter, finally after years of reading so many parenting books that never sounded anything like what my daughter was like. When I told my daughter, I was able to explain it in a positive way and she too was totally relieved to know there was a very good reason she had so many difficulties in life. She was proud of her diagnosis.

I then spent the next two months going crazy and losing sleep while waiting for the official diagnosis from the school psychologist. We were filling out form after form and it wasn't showing aspergers, just borderline and I was freaking out that I wouldn't qualify for services. The school was still calling me and suspending her and she was still running from the school. The school would not believe the diagnosis of aspergers from the hospital.

So in November, we got the diagnosis after the last set of forms finally demonstrated without a doubt she has it. I sat there so relieved to know we got the diagnosis and now the school would have to help us. I was also shocked to see how many difficulties my daughers had. She was biologicall 13, but her interpersonal skills were aged 4 and her coping skills less than 3.

So since then it has been meetings with the school and they are actually rather well with her on that front. We applied for the aspergers program for next year in high school. We also applied for a technical high school (with handson learning) and she was accepted yesterday. We are on a waiting list for the ABA program and I have applied for funding for a respite worker to take her for a couple hours to do outings with her and teach her social skills, etc. She has a social worker at school. I have applied for the disability tax credit. I tried one support group which wasn't a good fit and I am going to try one for aspergers this month. (It only runs one time per month)

I have read extensively and I now understand my daughter a lot more. My son moved out last fall, so I have lost the only other person who was helping me raise my twin daughters. I am trying to get her twin to treat her differently, so we can avoid upsets and meltdowns.

I am hoping to get my daughter help, but she doesn't think she needs it, but hopefully we will. It is still a struggle 6 months later because a diagnosis does not make it easier to handle her angry outbursts, the mean, spiteful and horrible things she says or the breaking things and violence towards us.

Edited to add - I love my daughter wholeheartedly and will do everything I can to help her reach her full potential. But I am also having trouble coming to terms with the diagnosis and how it changes so much in our lives and our future. I realize that I will not be blending a family with my boyfriend any time soon, I know that I may still be caring for her until she's 30 or older and I realize I will have to grow thick skinned to not feel so bad when she abuses us. Since September, I have had bouts of anxiety, depression, exhaustion and sleeplessness and I hope to get through this soon.

She is such a wonderful, smart and funny girl and I hope to bring out more of that side of her in the near future. Sometimes I feel like I am totally failing because no matter how calm and patient and accomodating I am, it is still never enough for her.

I'll let you know when I reach the destination.

Great, now I won't be able to get that R.E.M. song out of my head, were Stipe says "we can't reach our destination"

Driver Eight?