Thanks for letting me know about that book. I would be very interested in reading it. It almost feels as if us parents need to be the doc's and diagnose ourselves and our children. No one knows our children better than we do.
I would definitely agree with the fact that you have to be your own advocate with doctors and schools!!! Know your rights and fight for them so that your kids get the services they need and deserve. I have the diagnosis of Bipolar I, ADHD and have suffered panic attacks (horrible) which all came on after the birth of my kids and a post-partum psychosis, my DH has undiagnosed Aspergers, my 11 year old son has PDD-NOS and ADHD and stomache issues, my 9 year old son has Aspergers and ADD and my 9 year old daughter was diagnosed Bipolar after being given Effexor for OCD and ending up severely manic and in a Psychiatric hospital at age 6. They have all had medication and therapy (speech, OT, PT, social skills classes etc.) since early ages and are doing great for now. It has been a very tough 11 years raising my kids alone though since my husband left when they were 5,3 and 3. If I can help you please ask. My kids truly are a success story with how far they have come.
Wow, it sounds like your family has a lot going on. Did you decide to medicate your children? Or did you find that they improved from therapy alone? What age were all your children diagnosed? Does the description I gave of my 7 year old sound familiar to any of your children? With so many diagnosis in your family, you must be an expert. Thanks for sharing your story.
I really think that these disorders don't have to be in the immediate family. I think they can skip generations or something like that. Also---if you have alittle bit of something on one side of the family and a little bit of something on the other side-------those combine and you got it!! For example:
My kids have anxiety issues----whether its a form of OCD, general anxiety, panic, etc. Also--dyslexia/LD's (which ADD/ADHD could be a form of a LD). Here is an overview of my kids:
10y---anxiety/OCD, depression, dyslexia.
6y0--boy----bipolar, AS/HFA, anxiety, language disorder.
4yo--nothing so far.
Why did my kids end up like this????? At first--when retrieving info from family members about cousins, aunts/uncles, grandparents, etc----there were a few things that popped up. After a few years---more things pop up. We never thought anything was wrong in our families.......
My family----me---situational depression/anxiety--which I never had until the probs with my son.
my dad---maybe some ocd type stuff---perfectionist, has to get all things started done. Never late, etc. Never talked until 6yo--but back in the 30's---they didn't know any better. Very intelligent. Masters in Math and BS in science. Taught high school math for 30 years then went into administration for the school district.
my mom---obsessions with weight, eating well, exercise.
my 4 sisters---OCD stuff---very mild. But--one of my sisters was anorexia in high school--because of a comment my mom said about her butt starting to look bigger(she was 110#). She also has general anxiety pretty bad now.
nephew--expressive language probs(word retrieval)--not dx until 12yo.
Dh's family-----Dh--depression and undx'd ADD. He has some weird social issues---only can be friends with people who like the same things he does. But he is very social--talkative, etc.
his mom---MOODY!!! depression and anxiety
his nephew--severe ADHD, anxiety
2 cousins with learning disabilities
uncle--bipolar---his mom's brother.
grandma with severe OCD
So...my poor kids were doomed to anxiety issues in which ever form they wanted to pop up as. And they are only KIDS!!!
My 6y son was the first with probs. He was first dx with anxiety and medicated at 4yo. I thought he may had been bipolar--so we changed pdocs and got him dx bipolar and anxiety at 5yo. He has been on many, many meds for that. We took him off meds at 6yo when we sort-of officailly got ASD dx. We started going to a DAN dr to see if anything would work. It hasn't and we had to start him back on one of his meds for raging. WE went though alot--gluten/casein free, allergy testings, nutritional testing, peptide testing, vitamins/supplements, actually--today--I started a chelation trial for heavy metals. We won't even know for sure---100% that he is bipolar or ASD until about puberty. Right now----his therapists/ Drs want him treated like an ASD kid. Thats what he needs. So they gave him the dx so he can get more school services. We first saw our therapist for 5 months--until he was 4yo and she told us to get a pdoc to medicate him. Therapy at that age doesn't work--its more for the parents for behavior management.
My 10yo girl just started her "stuff" in 3rd grade. we see my son's pdoc in 2 weeks and hopefully he will give her meds. Therapy alone will not work for her.
My 11yo started out of the blue--panic attacks about 10 yo. She's seen my son's psych twice--to help with trying to stop the attacks before they get full-blown. It's not something to medicate for.
The medication was a KEY to my kids' success, development, leaning, focus and behavior! I first was told by my pediatrian that my oldest needed to be evaluated for speech, ot, pt, develpmental delays at his 1 year check up based on my answers to a series of questions he asked me. After taking him for the evaluations, I was told he needed all therapies about 3 times per week and to see a Neurologist and child Psychiatrist. At 15 months the treatments began and at 18 months we had seen the doctors and were told he was PDD-NOS. We did an overnight EEG which had mild seizure activity at night. At age 2 we started Depakote, and Celexa (for OCD). My other son had a similar path and was put on similar medicaitons. At about age 4 they were each give prednesone suppositories once a week for 6 months because the Neurologist also found an area of their brain that wasn't operting correctly. They went from no words, to single words in weeks, to phrases in months to full sentences in 6 months. They have been in speech all this time to understand social situations, expressions, and lots of articulation issues. They have physical issue such as difficulty holding a pencil and writing, very low muscle tone and terrible coordination. They are always picked last in gym and feel bad about it. At about age 6 they each got the addtional diagnosis of ADHD(older one) and ADD (younger one) after school issues let to thorough Psychiatric evaluations. They currently take Riseperdal and Adderall (oldeest) and Klonipin and Ritalin(youngest) and go to regular school with some resource room help in certain areas. My younger son is extremely intelligent and has a photographic memory which has really helped his confidence. My older one gets very emotional and down on himself a lot. He struggles academically and socially, although is is getting better each year it seems. My daughter was a bright, social, typically developing girl who was diagnosed at age 5 with OCD and given Effexor. As the dosage got raised she got worse and became psychotic and manic. She was put on Risperdal and Celexa which calmed her down but she gained weight. After about 2 years we weaned her off to see how she would do and she takes nothing now. She is moody, has to have things exactly her way, has to do things herself always, does things repetitively, can be very hyper and talk fast at times, but is incredible sweet, compassionate, philanthropic and intelligent. We're still not sure what puberty will bring, they say hormones can change these types of issue for better or worse. I know the hormone changes from my pregnancies made me very, very sick mentally! In terms of your daughter it is really hard to say. She doesn't seem to have the "developmental delays" you usually see on the spectrum. She does seem extremely strong-willed and "self-absorbed" like my oldest and my daughter which could be an OCD thing due to a need to control her environment (she can't help it, it is just part of her thought process) which an anti-depressant might help. It she has anxiety it would help too. I would find the BEST child Psychiatrist in your area and get her on some medication as a trial. You can always stop it if you think it isn't helping, but if you don't try you'll never know. The diagnosis isn't as important as getting her help to be as "normal" as possible for her sake as well as yours.
I think I am the only one in my family with AS. Everyone else seems to be normal. From what my mom said, I seemed normal until I began school. I don't know if I actually had something wrong with me from the start or if it was caused by some of my school experiences. I was bullied terribly at school. Luckily, I was a good student with wide-ranging interests, which helped me survive. My cats helped a great deal too. Those "four footed therapists" are very special!
I forgot it mention our family history:
1) my family has gambling addiction, depression, learning disabilities and possible undiagnosed Bipolar in a grandparent, highly intelligent throughout
2) my x-hubands family has depression, OCD, undiagnosed Aspergers, many acoholics and very high intelligence throughout.
There is so much we don't know about relatives in the past because science wasn't as clear as it is today, so who really knows! We are really lucky to be living in 2006 with SO MANY possible medications and therapies that just didn't exist even 20 years ago. I know I would definitely NOT BE ALIVE today if it weren't for the medical advances, and my kids certainly wouldn't be talking, interacting or functioning in society. Their lives would literally have been ruined by Autism. I encourage everyone I come in contact with to take full advantage of any and all affordable and available medical care to get your kids the chance at a life where they can be happy, have good self-esteem, find what they are good at and try to encourage them in the area or eventually field of work if possible (i.e. my boys love computers and video games so besides homework and some outoor time I let them play a lot), function at their best possible level, and eventually maybe even have some independence when they grow up.
My early experiences with medication were bad ones. I was given Ritalin as a young child, which didn't work for me, and turned me into a zombie. It was evident ADD or ADHD were not my problems. Based on my history and on an inventory of my strengths and weaknesses, Asperger's is a more likely diagnosis. I am taking Dilantin for seizures, which keeps them under control, and Zoloft for anxiety, which also works well. As I have said, other things contribute to my positive outlook. I am interested in a variety of things and have pets. I cannot underestimate the contribution of those "four footed therapists."
I am hesitant to get a formal diagnosis, because I have had bad experiences with evaluators in the past. I would like to find someone who won't limit me because of my Asperger's. I also want my diagnosis kept confidential so it wouldn't be known at work. I don't wish to jeopardize the gains I have made up to this point.
It sounds like you are a very intelligent person, who has made it thus far with no diagnosis. I don't think you really need one. And I think it is great that you have been so inspired by Roger Bannister. I wish I could find something or someone to inspire me so much.
Thank you for the kind words. There are so many things I want to do yet, such as drive a car and learn to take care of myself adequately to handle life when I find myself alone someday. I am happy with my life, but there is so much more I want to accomplish. I have more than I ever thought I would have as a young child who was bullied constantly at school. However, there was always the consolation that I was smarter than they were and had my interests to get me through.
Roger Bannister is an inspiration to me not merely because of the great things he accomplished, but also because he is a good, kind man. It is inspiring to see a person who combines great accomplishment and great character. Roger Bannister never was very keen on fame. He was quite shy and avoided the spotlight. He chose his wife, Moyra Jacobsson, because she liked Roger Bannister for the person he was, rather than because he was famous. The joke was that she thought he had run four miles in one minute, not true, but an illustration of the fact that she was not a track "groupie."
I wish I had heard his story when I was younger and really needed some inspiration but, even at my age, I can still hope. It's never too late.
Okay, so tomorrow is the big day. My husband and I have a meeting with my daughters neuropsychologist to find out the results of all of her testing. I hope that she has some answers for us. It is the not knowing that is so hard. Their problems seem so much easier to handle when you know exactly what you are dealing with. I will post tomorrow evening to fill you all in on the results.