My now 18.5 oldest difficult child was a couple months old when we realized if she took even a tiny nap in daytime she would not sleep until very late into the nite. By 12 months we could not let her nap or she could not sleep at all at nite. But we also noticed she did not wake at nite once she was asleep. We began seeking help at age 3 becuz by then we saw how very different she was from her sister. Punishments never had any effect on her, neither did bribes or praise. SHe would not try anything like coloring with crayons or building with blocks. And she seemed to "hoard" almost everything.
We started with pediatrician, pediatrician said we were "inexperienced parents" "unable to accept our child was fine" WIC sought our child out to go to Headstart and Headstart complained she was a difficult child. We began with parenting classes, and in home play therapy and added in a psychiatrist, a therapist, childrens social skills group, then added in siblings group, girls group, peer group, in home behavior mod, case manager, facilitator, family therapy, SASS, WRAP, pre teen group, teen group, a Big Sister, a mentor,
Her diagnosis ranged from ADD, ADHD, depression, Obsessive Compulsive Disorder (OCD), mood disorder, anxiety, bipolar, social anxiety, general anxiety, panic attacks.
My son was a preemie, born 2 months early, when I was 37. His at birth PKU came back 3 times with "incomplete" results. He was tested for cystic fibrosis, we were told at birth he could have spina bifida occulta, but they did not check him for it at that time. We were also told they suspected mild cerebal palsy.....but his pediatrician thought those ideas were "silly" and she continually dismissed them.
He was colicky and slow to progress but pediatrician still felt he was within normal ranges. He talked extremely early and he spoke in full sentences. He walked at a normal age, but he walked on tip toes. AT age 3 psychiatrist thought he was ADD......but I did not see signs of that. At age 6 dtrs psychiatrist insisted trialing son on stims. They made him suffer weight loss, and he was already very frail. They also caused him excrutiating headaches. SOn was not toilet training on the normal time line..nor was he riding a bike and he was poor with handling a ball at school in gym. ANd his handwritiing was illegible. He could not name colors. psychiatrist insisted my son did not WANT to- psychiatrist said my son was "lazy" School also said same. pediatrician said son was normal and fine. I went behind everyone and got him in at SHriners and they did an MRI and bloodwork, genetic testing etc. The MRI discovered heterotopia, atypical seizures and mild cerebal palsy, shortened tendons thruout his body especially his achilles. They also found some concerns in genetic testing that now continues to be investigated and followed. With Occupational Therapist (OT) and PT my son has learned to ride a bike, but his handwriting remains illegible. He also still toewalks altho has Occupational Therapist (OT) and PT and wore bilateral leg braces for 3 years.
My husband seemed ok when we met, back in early 85. He worked as a systems analyst, private consult......but by 1990 he began to withdraw and become paranoid and anxious. By late 91 he became catatonic. He was admitted to phsop, diagnosis started as adult ADD, then adult ADHD, then anxiety, then depression, then failure to thrive, passive suicide, mood disorder, PTSD, combat PTSD, early onset ALzheimers at which time the VA took him into their PTSD program. They then diagnosis'ed bipolar and then scizoaffective disorder. and then brain tumors.
He began in home therapist, also behav mod, life skills coaching, day treatment program, several psychiatric hospital stays, some short some longer. Biofeedback, light therapy, and many many many drug trials. He did day treatment in community treatment for 5 years and 5 more years at the VA in the combat PTSD program.
SO, in my children age of onset? I would say toddlerhood or birth. In husband I would say 40 yrs of age?
what was most difficult time? For my oldest dtr, age 12-17. no doubt. the VERY worst with her? when she was in Special Education classes. What does she say NOW? her Special Education classes were times when her peers and her compared notes on what drugs were most exciting, how to get away with certain behaviors, how to sneak out, how to cut school and not get caught, where to hide your stash, how to manipulate any system to get what you prefer. and in her Special Education classes she says the kids with the most out there behaviors, most psychiatric hospital stays, were the most respected, most popular.
My most difficult time with my son? NOne by his hand. Trying to convince his school low muscle tone is a valid reason for crummy handwriting......and seizures are NOT "willful" behavior or choices.
Most difficult time with husband? Used to be I thought catatonia was most difficult. I no longer feel that way. Catatonia is far easier to live with day in and day out than paranoia, rages, etc.
Truth is my easy child is giving me a run for my money right now. SHe will be 17 in May. Sadly she was victimized and had never let on, for YEARS by a friends parent. BUT, LOL_ I think what is difficult is NOT related to that, but just ordinary simpe typical teen stuff!!!!!! LOL. SHe is becoming quite independant- working, had drivers ed etc.but our family finances cannot afford her to drive.....and her job does not pay quite enough for her to drive.....and it is causing some s erious difficulties. And I am getting weary of all the court dates for the person who hurt her-----it has been dragging on and on and trial has not yet begun.....new charges keep getting added, new victims keep getting found......and the suspect keeps getting re-arrested for contacting the victims.
What has helped most? A sense of humor, not taking very many things TOO seriously, remembering things change..sometimes quite quickly.
I wish I could say some of our professionals helped......in my humble opinion they didn't. Often they made things worse, sometimes MUCH worse, especially when they fought amongst themselves and trapped us in the middle. medications? Eventually all our docs removed all the medications from husband, oldest difficult child and well, son still uses steroid eyedrops, but thats all. 15 years of intense medication trials never did uncover a medication combo or medication that gave any positive effect.
I can say the last 2 years or so, less and less people notice anything about my oldest difficult child or my son....the biggest noticeable thing about my oldest child is she cannot, absolutely cannot go onto school grounds at all for anything------most recently she has begun to disassociate when anywhere near the school. And her needle phobia......when I do my injections for my illness, I have to warn her the nite before, and again in the morning, and usually she leaves the house. I also have to hide all the supplies so she cannot see them or she sobs, trembles, shakes, vomits, breaks out in hives. I also cannot use the word shot or injection or needle or sharp- I have to say...it is The Day, Buffy. Tomorrow.
MY husband? forget it, I keep him in the house, away from people.....I keep people away from him.....he now lives his life in videogameland.
My kids know each others triggers, but what is amazing? Our home is a preferred gathering site for my kids friends and peers. My teeny tiny 900 sq foot house.....with no hi tech gadgets.
