New diagnosis

Discussion in 'General Parenting' started by Pitario, Jan 19, 2010.

  1. Pitario

    Pitario New Member

    Hi everyone,

    I am new to all of this and am currently crying out for advise. I have not confided, todays news, to my family or friends. Why? I don't know how. Long story short:

    My daughter, age 9, had a traumatic birth. She was starved for air but at he time all tests came back okay, no damage done. She was diagnosed with ADHD in grade 1 and has been on 3 different types of medications to date. Currently on Concerta which is working very well for anxiety and a little on the impulsiveness. Last year I asked the school to do psychiatric testing because I felt there was an underlying "something" that was being missed. The psychiatric tests came back and I had my meeting today. daughter also suffers from a mild intellectual disability. Focusing mostly on social skills. We are working with a social worker currently and I will be taking a copy of the report to my daughter's doctor. She is currently on an IEP and will be staying on this but it will be made a permanent part of her record through an IPRC.

    Now a little about me. I'm tired, stressed and am unsure on how to handle my personal relationships from here on out. I work with the Developmentally Disabled, now isn't that ironic. I am a single Mom, 45, and am just starting a new relationship...the first since the birth of my daughter. We have been dating for 6 months, he also works with the developmentally disabled and is a "trying to" recover alcoholic. Who has fallen off the wagon 3 times in as many weeks. I care for this man very much but don't want to bite off more than I can chew.

    I know nobody can tell me what to do, but I have no idea what the road ahead is going to be like with my daughter. I need to talk to my boyfriend about this but I am ashamed. I know what happened to daughter is not my fault but I am unsure on how to approach the subject.

    I'm sorry if this is all jumbled and makes no sense but that's kind of how my brain is working right now :confused:

    Annnnnnny advise on annnnnny of this would be greatly appreciated.

    Thank you
     
  2. gcvmom

    gcvmom Here we go again!

    First off, welcome! We're glad you found us, but sorry you had to.

    Second, I have to say that you will do yourself and your daughter a favor if you simply let go of the guilt. It is NOT your fault. It is NOT her fault. No one judges you, no one blames you, and if anyone TRIES to, then that is someone you do NOT need in your life. The situation is what it is: something that was once misunderstood but is now being clarified so that you can put the right supports in place to help your daughter and move forward. This is simply a side street in the journey you set out on as her parent. Your goals for her are still the same, she will just likely reach them using a different map and a different route and a different timetable than you originally thought. It's not better, it's not worse, it's just different.

    Since you asked for advice on annnnny of the info you posted, I'm going to take a stab at the boyfriend topic. I think you should be up front about everything you've learned if he is truly someone you are serious about. And if he is someone you are truly serious about, I think you should expect him to be working a lot harder on his recovery before allowing the relationship to proceed much farther. You have enough on your plate dealing with your daughter, your career, and life in general without taking on the added worries of someone who is not fully committed to their recovery. Just my 2 cents based on very little knowledge!
     
  3. Marguerite

    Marguerite Active Member

    Welcome to this site. Sorry you need us, but there is help here.

    A few thoughts on what you shared.

    First, you need to come to terms yourself with your daughter's diagnosis. I understand your current reluctance to share this with anybody right now. How can you tell someone else when you're having trouble with this yourself? But you do need to deal with this so you can move on and begin to help your daughter.

    Second, her condition may not be related to her difficult birth. And even if it is, there was nothing you could do about it. What's done is done. Nature is an appalling midwife, we have become accustomed to expecting a perfect delivery with a perfect child, every time. Life just isn't like that. So as gcvmom said, let go the guilt. All guilt does, is slow you down and get in the way of you getting on with being an effective mother.

    Third, your boyfriend. He sounds needy too, right when you need a support and not another child. Has he attached himself to you because you are a parent figure who can support him? What does he bring to the relationship? What you DON'T need, is someone who needs to be rescued all the time. If he isn't ready to look after himself, I would suggest you take this relationship more slowly, if you can. He needs to be in the right place headspace-wise, before he moves in with you. Otherwise he will (in some place in his head) try to make you responsible for his sobriety. Bad for him, bad for you.

    The fact that you find it hard to tell him about your daughter right now, tells me that I think you are aware of this (his lack of readiness) and are appropriately keeping him a little at arm's length.

    You don't need another person dependent on you. He has to take responsibility for his own sobriety. He needs an environment where he has control and where he doesn't have any handy excuses for falling off the wagon. Let him prove himself first. Meanwhile, you will have your own space with your daughter, to sort yourselves out without added complications.

    That doesn't mean I think you should cut him out of your life - not at all. But play it slow and cool. If the relationship can't stand this pressure, then it's better to find out before you get in too deep. If it can - it will be all the stronger for going carefully.

    Also - tell him about daughter as soon as you feel you can (in yourself). Also tell daughter about herself. She needs to understand why things are difficult for her. But when you tell her, let her know that the brain is a marvellous thing and capable of more self-repair than people have previously realised. That's assuming the oxygen starvation is related to this.

    My nephew had this problem. My sister was told that by the time he started school, he would have made up all his lost ground. He hadn't quite, but he got through school OK.

    My sister was badly brain-damaged at age 5 by encephalitis. She left school as soon as she was legally allowed to, barely able to read or write. Very insecure, very anxious. But over the years she has become more capable, learned a lot more, done courses and besides raising a family, she has run her own business, done a course in accountancy and is doing amazingly well.

    So for your daughter - life is a bit more difficult for her and she needs a bit of help for a while. However, her brain is learning all the time and improving all the time. One day she will find what she enjoys doing and is good at. There will be something. There always is.

    A book we recommend here is "The explosive Child" by Ross Greene. It really helps when you're trying to manage discipline for a kid who seems to get worse instead of better, with the usual discipline techniques. Kids with impulse control issues; kids with a short fuse; kids with communication or social skill issues; or all of the above. The book really helps.

    Marg
     
  4. LittleDudesMom

    LittleDudesMom Well-Known Member Staff Member

    Well goodness, everthing I thought reading your post has aready been shared by gvcmom and marg!

    I'm glad you are here though. This is a great bunch of caring parents who are rarely suprised by anything posted here! Getting a diagnosis for your daughter is a good thing. It means that the school will now be able to offer services that can help.

    Stay positive, focus on the good. Make sure you and your daughter are numero uno!

    Sharon
     
  5. DaisyFace

    DaisyFace Love me...Love me not

    Hello and Welcome--

    First, it's OK to struggle with accepting your child's diagnosis. In some ways, you do have to 'grieve'. You grieve for what might have been....

    That's OK. There's really no reason to bring anyone else along.

    Then, after you get over the initial shock and disappointment--you will move into the "OK, so what can I do about this?" phase. At that point, you will have to decide whether the boyfriend is someone who can assist you....or whether he is dealing with too much of his own issues right now to be a positive influence.

    If he's mentally and emotionally available for this challenge? Great!

    And if he's not? Better to be honest and up front about it. If the relationship needs to take a break while he gets himself together, that's OK, too.

    Sending ((((hugs))) and support...

    --DaisyFace
     
  6. nvts

    nvts Active Member

    Hi! One thing that I'd like to add is to recommend that you have a neuropsychologist done on her asap. You can have them done at a Childrens or Teaching hospital. You mentioned adhd and anxiety and now the learning disabilities, I'm wondering if there isn't something that has these as symptoms such as Aspergers Syndrome or Pervasive Developmental Disorder (PDD).

    You've had her on different 3 different adhd medications and none have worked, it could be something else going on.

    Gotta go...difficult child 3 is having a meltdown at school and I have to go get her!

    Beth
     
  7. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Welcome to the board! You have stumbled upon a great group of people who will provide a whole boatload of support and knowledge.

    Like everyone else has said, its ok to grieve. There is a great little article somewhere on this site about Holland. Oh here it is!

    "Welcome to Holland" by Emily Pearl Kingsley about raising kids with disabilities.

    "When you are going to have a baby, its' like planning a fabulous vacation trip - to Italy. You buy a bunch of guidebooks and make your wonderful vacation plans -- The coliseum, Michelangelo's David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

    After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

    "Holland?!?!"" you say. "What do you mean, HOLLAND? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

    But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It's just a different place.

    So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

    It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there awhile and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

    But everybody you know is busy coming and going from Italy and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I planned."

    The pain of that will never, ever go away, because of the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you may never been free to enjoy the very special, very lovely things about Holland."
     
  8. Pitario

    Pitario New Member

    Dammit Janet you made me cry. That is a very thought provoking story.

    Thank you to all who have replied so far, you have no idea how much your input is appreciated. It is so difficult to speak to others about this because they have no idea what emotions, frustrations, and bewilderment go along with all of this.

    Daisy Face - I realized today that I am grieving. I am grieving for the life I wanted for more daughter, the easier life. I'm hoping she will be able to learn coping strategies so she will have the fullest life possible.

    nvts - you mentioned a neuropsychologist. I will have to google this and find out more about it. I will be seeing my daughters doctor in a few weeks and will discuss this with him. A more specific diagnosis may be an answer.

    LittleDudsMom - I will stay positive and will not forget that my daughter is my number 1 and I will go to the end of the earth for her. Everyone else will have to accept that or they can move on.

    Marguerite - You, along with everybody else, give some very good advise. You are correct, I do need to make sure the boyfriend is serious about his sobriety (and us). I have also thought that he is needy at this point and I was okay with that until yesterday. Right now I have to focus on my daughter and if he isn't serious than I must move on. I will be talking to him within the next few days.

    gcvmom - Do you and Marguerite talk to each other first before posting? ;) Both of you have pretty much summed up everything I have been thinking on the boyfriend front. You have also made some valid points on the direction, or change of direction, that my daughter and my, lives have taken.

    Now, a couple of other questions I have. This one is pretty blunt but...will my daughter ever lead a "normal" life? By normal, I mean, if all of the supports are put into place for her and we work hard will she be able to attend College or University? I know nobody can see the future but good news stories are most welcome. Also, what do all of the acronym's stand for (gbg, gbh, etc. not exact but close enough :redface:)
     
  9. Marguerite

    Marguerite Active Member

    I can't tell you if your daughter will ever lead a normal life. But considering all the possibilities she could have had getting in her way, she has a very good to excellent chance.

    it is up to her, largely. She may not want to go to college or uni. But if she does want to, and if there is a course she wants to do tat she is interested in, then there is no reason why she shouldn't.

    You want success stories - think of Susan Boyle. She has had a low-level education because she was labelled "retarded" and "learning problems" at school. Add in shyness plus being a bullying target, and you can see she lived a very quiet life. She was the dutiful daughter who put her life on hold to care for her mother.

    But when you listen to her interviews, you can hear the person she is. Where is the handicap? I listen to her and I hear a witty, funny, intelligent woman who has lived a sheltered life but not a sheltered workshop life. I bought her CD and when I listen to it I can hear just how much she has learned in a few short months, to greatly improve her vocal presentation.

    Another success story - Temple Grandin. She is my inspiration. I have attended a conference where she was keynote speaker, plus read her books. She was noon-verbal as a youngster, the classic autistic kid oblivious to others and h=banging her head on the wall, flapping her hands. But she learned to talk, she learned to do a lot for herself, she got through her lessons and with support, she got to uni to study animal behaviour. She is now an Associate Professor at Colorado State, plus she does a great deal of freelance consultation work around the world.

    She has needed a lot of support, she has also worked out a few things for herself, things tat help but which people wouldn't normally think of.

    So for your daughter - of course there is potential there. And the more you support and encourage her, the better her chances.

    A woman I know (a client of mine as well as a friend) was born with cerebral palsy (or so they thought). In those days they believed that it was linked to mental retardation. So she was simply left, at school. They didn't bother to teach her, if she couldn't keep up with the class ten she got left behind. She barely learned to read & write, had trouble with her hands anyway so holding a pencil was a problem. No IEP in those days, minimal support. Plus where educational support was available, she didn't get any because her parents felt she needed to learn to cope without support. (another friend of ours, born deaf, was not allowed to learn sign language and was sent to a "normal" school so he would learn to lip-read. Again, no accommodations. These days he's a builder and landscape designer, married with kids, also a public speaker).
    My friend who was left and was illiterate - she left school when she was about 8 (nobody bothered with the truant office since she was considered retarded) and helped her mother in the family shop. She grew up, worked in a sheltered workshop, got married, had twin boys (after being told she shouldn't have kids) and is now divorced (she threw him out, but has recently taken him back, on her terms) and is working on her SECOND book. OK, I am helping a lot, but she has self-taught computer skills, spelling, reading, writing. She is amazing in how much she is still learning, every day.

    I can't say your daughter will reach her milestones at the usual times. I just don't know. But her chance of reaching those milestones eventually - I would put in the high 90%s. But I haven't met her. The thing is, these days we understand that the brain is capable of amazing things.

    difficult child 3 "failed" his first IQ test. We were told (when he was 4) that he would never attend a "normal" school and would not be ready for school, ANY school, for several years yet. But a year later he started at a normal school. They knew he was reading but didn't consider there was anything in that, other than "parrot-fashion" "idiot-savant" function. I was actually told that he wasn't really intelligent, he only seemed it because of these quirky imitative capabilities. Being able to recite chunks of text or the alphabet wasn't clever, if he wasn't otherwise talking.

    difficult child 3 is still studying the same subjects as other kids his age. He may be a correspondence student, but it is a mainstream program. And in his best subject, Computing Skills, he scored 99% in the last exam. We believe he has a good career ahead of him, in IT.

    Acronyms - difficult child = Gift From God, the child that brought you here. easy child = Perfect Child, although none of them are ever perfect. husband is Darling Husband. There is a link with all the info on the site.

    Marg
     
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