Discussion in 'General Parenting' started by Aurora, Apr 26, 2012.

  1. Aurora

    Aurora New Member

    I've been reading discussions and information here for a couple weeks, but writing about myself seemed too daunting.

    I am 48 yo and have a 27 yo with Asperger's and a four year old diagnosis Pervasive Developmental Disorder (PDD) not otherwise specified. I have a BS in Special Education and an MS in EXE Learning and Behavioral Disorders.

    My son is a third generation teacher. My father was a Phys Ed. teacher/coach and my son teaches ESL. He has traveled widely, taught for two years in Taiwan, played in a classical Chinese Orchestra in Singapore, performed in clubs in Tokyo and Taipai as well as in outdoor festivals (like Chinese Woodstocks) in the mountains. He surfs and mountain climbs and studies all forms of transcendence.

    I wrote way too much about my Beautiful Little Girl (BLG), trying to paint an accurate picture with words. But then I copied and pasted into a Word file to save for now. Who wants to read that much about strangers when they have their own problems

    Beautiful Little Girl (BLG) is diagnosis Pervasive Developmental Disorder (PDD) not otherwise specified. She is very smart but has receptive and pragmatic language deficits. She mostly learns sentences (delayed meaningful echolalia) then breaks them down and makes changes, rather than learns words then puts them together into sentences. She has difficulty with shared attention and following directions, as well as what they call "Complex Stereotyped Gross Motor Movements" and I call Hypokinesis. She is very sensory seeking in movement, resistant or mixed in other senses. She has had Early Intervention from 4 months, first for motor asymmetry. later for Autism Spectrum Disorders (ASD) red flags, then for Autism Spectrum Disorders (ASD). She has come a long way. It has been a long long road for us both. I could write pages (in fact, I did! Then decided to spare you).

    I wanted to give you the big picture of her family and past though. I have hip, joint, and chronic pain problems, as well as depression and certain kinds of anxiety. In January I was hospitalized and diagnosis with Heart Failure. I have little family support. Thankfully my son is back in the area, but is in the city with no car and I am 45 miles out, in a very rural area. My father got married a month before BLG was born, to a woman that is all sweety sweet publicly, but get jealous of any time he spends with us - even to do repairs on the house HE owns, that we rent from him.

    Still, I waited my whole life for a daughter. When we spent a year trying to get pregnant, I prayed every day for a child. When they told me girl at "the amnio" I burst out crying with joy. This is a family under stress. but this is not an unloved or unwanted child.

    AS this year progressed, there were major problems with her mainstreamed pre-k class. We got a puppy, and teaching BOTH of them to behave towards each other was much harder than I expected, despite a lot of experience in these areas. We no longer have the support of EI. Seeing her maul the animals, and sometimes strike out at them (in ways which I cannot tell exactly the source of the behavior) began to really worry me. Other areas she made good progress in. Then I was suddenly and unexpectedly hospitalized. It was only five days, but they wouldn't let her on the hospital floor, and it must have felt like abandonment for those days. I had a lot of trouble with her when I came home. Just when it seemed like I was making progress, we'd get a vacation, and she'd regress with the change in routine. a couple of weeks ago she was with her father alone for the whole week-end. I know that he goes from being really loving towards he to coming down on her really hard, because I see it. He has also come in to my house and ended up swearing and yelling at me. I really don't know how we got this bad, but she has turned really aggressive towards me. She spits at me, sticks her tongue out and makes raspberries when I ask her to do something. She swears at me continually, punches, kicks me. Actually she acts just like her father (though I have to admit, years of not having a little one have caused me the habit of swearing too, and I am having a hard time getting rid of the habit - though I never swear at people, more like "Damn!" when I drop something.)

    Her Grandmother tells me it is my fault, because (according to Grandma anyhow) she never acts like that over there (father lives with his mother). I believe that that is because she not only learned it from him, but is afraid of him. However, she has learned from him also that it is okay to act that way to me. Also, they let her lie around and watch TV and there are almost no rules or pressures. They don't even comb her hair or put necessary skin cream on for her eczema (because they are unable to due to her violent tantrums). I am the one that has to drag her out of bed Monday morning after she was up all night from sleeping all day at their house and eating sugary foods that make her super hyper. I am the one that has to comb her hair and give her medicine and administer skin cream and cut her hair and brush her teeth and stick to routine and feed her balanced meals and teach her to sleep in her own bed.

    Oh dear, this has become as long as the one I cut - so sorry. I am trying hard to paint the whole picture. It is only the past month that I have stopped focusing on the Autism Spectrum Disorders (ASD) and admitted to myself that, whatever the basis, she also has a behavior disorder. She never did the obstinate thing at two years old, or the "why" stage at three. I wonder if part is not that, even though she is intellectually normal to advanced, is emotionally delayed and wrestling with some of the two and three year old asserting independence.

    ME? The last bit of heart I have is broken. After separating from her father, and largely losing the close relationship I had with mine, as well as losing my health for a pregnancy that late, my (handmade jewelry) business when I couldn't do that AND raise a high needs child, all I live for is my Daughter. Now she swears and spits on me and kicks and punches me. In between she is all "I love you Mommy", but....

    I try not to take it personally because I know it isn't. It is just more than I can take on the really bad days though. I am really worried about her future, as the day is rapidly approaching when I will not be able to physically control her. If I can't handle her now, what will she be like at 14?

    What am I hear asking you all for? Now that I finally come to the conclusion of my posting, I find that I am not sure. Perhaps you know?

    Thanks for listening,
  2. buddy

    buddy New Member

    Hi, I am so sorry you are in this place....but really glad you found us. I AM the mom of the 15 yr old who was doing what yours was doing back then. and now when he gets aggressive...either verbally or physically, it is awful. I still have hope though, and we seem to be on an upswing. Not perfect but a few days of no bruises. Just a month ago I was black and blue from head to toe and wondering if my son would need to be in an institution for a long long time. (long story) but he is now settling in a new school and even his therapist said, wow he actually seems happy! YUP. I too live for him and those moments do make it all worthwhile. I do not have a serious illness like you do though (I do have auto immune stuff but it is not life threatening nor serious at this point).

    Even though we know it is not personal, it is so wearing and human nature to feel so insulted when someone spits, kicks, hits, punches, throws, calls us horrid names... just so awful.

    I come here and cry about that once in a while and thank heaven there are people here to lift me up. I hope you can feel that too.

    I posted recently that Q was swearing his head off at me and saying in fact I am not even his mom anymore, he doesn't love me...then he quietly said...well sometimes I do love you...then again back to yelling but not right now! It is so hard when we know they would do better if they could but it is still so draining that it is hard to be a therapeutic parent all of the time.

    Dont worry about the reason for posting, just share and really does help.

    You are not alone.
  3. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Hon, is your daughter getting early interventions?

    My son was dxd. with Pervasive Developmental Disorder (PDD)-not otherwise specified. I hear that this is changing and that soon the DSM will only have Autistic Spectrum Disorder, and this should make interventions easier to come by.

    Due to all his early interventions he can more or less behave like a "typical" person (he is eighteen). But he was not so different from your daughter. His early interventions included speech, Occupational Therapist (OT), PT and social skills and continued on into school. I can not tell you how much it has helped him. Plus he also seems to have looked around and figured out what is and is not appropriate and can mimic it to a large degree THERE IS HOPE! I'd call the school district to see if she qualifies for early education. She can qualify even with a high IQ. My son had meltdowns and violent tantrums at two. He is a very calm eighteen year old now. He isn't violent or nasty at all. In fact, I worry that he is too nice; too naive, but it's better than the former!

    Do not take her words personally. She is frustrated and doesn't know how to express it, but she does love you.

    Please get help.
  4. Liahona

    Liahona Guest

    Hi, your post took me back to when difficult child 1 was 4 yrs old. Trust your sp ed training. It took years but eventually difficult child 1 started to get it. After 7 years he started to calm down in time out. About the same time he started accepting praise instead of melting down each time. The visits with her father probably are very bad for her, but there isn't much you can do. I found that by having my house be consistent that eventually difficult child 1 came to recognize that my house was the one he liked. My x would do some of the same things yours does (plus some other stuff); no rules, tv all day, lots of candy and new toys, ect... All of this will take years, lots of heart ache, and lots of work. I'm sorry its not easier. The school does pick up after EI leaves off. I assume that is where her pre-school is? You are not alone. I've been where you are and it does get better.