HELP!! !! !! !!!MY ALEX AND ME!! !! !! !!

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ILOVEALEX
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01 Nov 2005, 2:15 pm

Hi,
This is my first time here. My daughter Alex who is 17 has been diagnosed with just about EVERYTHING. I mean, first it was ADD/ADHD, then they hit us with Schizophrenia, then Bipolar depression. Well, they've definitely gotten the depression part right. Her doctors have just started throwing around the words "mild"autism. I have been thinking aspergers for years. She's quite classic in her symptoms. But, now, since being a teen she has been suicidal. I am terrified that I will "find" her some day gone. She will be "fine" and then the littlest thing will set her off. Two days ago it was me asking her to do her chores. Somehow, out of this came, the words (after escalating of course) "The b***h has to die" I'm sorry about the cussing, but it is part of my problem with her lately, she never swore before. She grabbed a glass off of the counter and began slamming it against her face. I am so scared that she will seriously hurt herself during one of these rages. I don't know what to do, short of tackling her to the ground and holding her there until it subsides. This time it was because she was flailing her arms about and accidently slapped me in the face. THAT seems to be what snapped her out of it this time. She was very appologetic, as she never hurts anyone but herself. I'm so scared that I will lose her. She has no friends, even teachers have a hard time being around her. She's lived with her biological father, and even with his mother for some time, now she is back with me, and I just don't know if I can take it anymore. She screams things at her six and ten year old sisters like, Don't worry you won't have to deal with me anymore, I'll be DEAD when you wake up. My girls LOVE their sister, and usually run to their rooms in absolute hysterics. What do I do? I can't keep her safe from herself anymore, and I NEED help. Unfortunately my husband makes too much money to get ANY help from the state, YET we are being financially crippled by her medical bills. They don't take into account that we have a mortgage, and car payments and the like. These bills are in the the tens of thousands. I don't know what to do, please SOMEBODY help me, ANY advice would be appreciated.
Thank you for "listening",
Tanja
A.K.A. ILOVEALEX



Last edited by ILOVEALEX on 02 Nov 2005, 2:47 am, edited 1 time in total.

gretchen062174
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01 Nov 2005, 2:54 pm

Hi,

Have you ever heard of NAET? I tell you, it has been a god send for my son and others I know. 2 years ago I was told over the phone by my son's pediatrician that they thought that he had Tourettes. I was devastated. He was only 4 at the time. We took him to a neurologist, psychologist and even an opthalmologist. (since some of his ticks were with the eyes). He had all of the symptoms of Aspergers and we were told to have a more intensive eval as at this particular hospital they have an entire department for Autism spectrum disorders, but we were told that he would be diagnosed with Aspergers. I ended up dragging my feet on the evaluation as I felt like I was losing MY mind. I was spinning from all of the paperwork and there was a lengthy wait to get in an appointment. I had him start preschool through the special needs program. He had ALL the symptoms of autism. I had heard about NAET but I wanted to wait until I had a firm diagnosis so that if he needed help at school he would not be denied. I could not take it any longer, as the school was videotaping my son and showing me horrendous scenes of my child's behavior (I had never seen this behavior, either but that is beside the point). I couldn't take another video and could not wait for his appt at Children's hospital. I called and made an appt for him to be evaluated through NAET. NAET stands for Nambudripad's Allergy Elimination Techniques. You can go to NAET.com for the what and how. It is like accupressure. I will be the first to admit that it sounds weird but let me tell you there is something to it. After each treatment it is likely that the individual will exhibit the symptoms that the sensitivity caused. He only had about 7 allergies which we started treating immediately. After the first treatment he was very calm, and answering questions I asked (this was new... REALLY NEW!! !) He told me what he did the day before. He couldn't tell me what he did a minute ago so this was very exciting. After the next treatment he was angry.....VERY ANGRY. After 2 days the anger subsided and disappeared. His teachers noticed a difference after the second treatment. The third treatment brought crying for 1 day and then that subsided. He also began giving eye contact which was non existent before he started. He could have an interactive conversation. He could appropriately have conversation. It was amazing. A friend of mine that thought that I was a bit crazy saw such a difference in my son that she took her daughter that had been diagnosed with a cognitive learning disability. It was realized that her daughter in second grade could not read on a Kindergarten level. She had been in a reading program for a year and a half and had only progressed to 1st grade reading ability. She took her daughter to the same dr that my son went to and after 2 treatments over a span of 3 months she progressed to 4th grade level (where she should be). She started school this year without the help of a special ed teacher for reading. Which according to the school is extraordinary. They commented that "We have never seen anyone progress that many levels of reading in such a short period of time". My friend did not tell them about the NAET because she was afraid that they would think she was crazy. I am telling you. It can't hurt. I spent over $800.00 in Copay's and coinsurance taking my son to dr after dr with no help. But I only spent $500.00 on NAET and my son has totally transformed. I did eventually have him evaluated and when the dr's at Children's read the paperwork submitted by myself and the school, and the neurologist and psychologist and then saw Ethan they could not believe that he was the same child. He started Kindergarten this year and no longer needs speech therapy. Sorry this is so long but I have to spread the word. I have also referred 4 other people to this treatment and they are noticing differences with their children as well. It's worth a shot!! !!



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01 Nov 2005, 3:05 pm

There is more going on with your daughter than can be addressed with a quick fix. I strongly suggest a multi-disaplinary evaluation at a children's hospital. I understand how frustrating it is when different doctors tell you different things...that's the value of having them all there in the same room at one time.

Take her threats seriously. Call her lead doctor and tell them about it right away. If you can not affort it, the doctors should be able to direct you to aid. Its called the "Katie Bracket" waivers.

How is school going for her? Does she have an IEP or 504 plan? In either case, if your relationship with the school is good, I'd also call them and ask to speech to the school social worker or councilor. They might also have idea.

She is crying out for help and it must so hurt your mommy heart to see her in pain. ((Gentle hugs)) to you both.

Please check back with us and let us know how things are going.

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01 Nov 2005, 4:15 pm

My daughter also has Aspergers and we we were able to get supplemental insurance thru the state we live in. It took a little time but is well worth it, ofcoourse we have to pay a insurance premium for it, but it has saved a some money right away.

Good Luck, Draxy
:)



01 Nov 2005, 4:25 pm

Well, you've got a problem, and I feel for you, because my son Michael is just about the same way, but here are a couple of things you can do (assuming you haven't done them).

First, obviously, Alex has a psychiatrist. I'm not an opponent of medication. Some of what helps Michael, when he's down is the medication. But the most important part is YOU. Your sanity, your balance, and your ability to smile...or at least project an UP attitude. The whole problem is a very depressing one from a parent's point of view. You think "Well, what did I do wrong...if only I had...." Absolutely not. You didn't do anything wrong. And I'm sure it doesn't help when you try to go in and talk to her, and you get shut down or verbally attacked. That hurts, but it goes with the territory.

1. Remember that your daughter is like a cat. A dog sees any attempt to alter direction as something to be used to change behavior. A cat sees any attempt to change behavior as a personal attack.

2. Remember that unless the issue is very basic, there probably isn't anything that you want done that absolutely needs to be done....so back off.

3. Make sure Alex is carefully watched for awhile.

4. You are just the parent. You didn't cause the problem. You are dealing with a physical problem, even though it comes out as behavior.

5. There is a good deal of evidence that all of this stuff (Asperger's, Tourette's, ADD ADHD) gets better over time. Take care of yourself and you will be able to take care of your kid. When you get ready to scream, take a deep breath.....and walk out. (after making sure there's someone watching Alex)....and get away for a half an hour.

And finally, remember one very important thing....something that doctors sometimes forget....she is Alex, the person, not Alex the diagnosis. That's a difficult perspective to keep, but it helps.

Hope that helps.

RS



01 Nov 2005, 6:33 pm

I think maybe take control of the situation and show zero tolerance. There are passive and submissive ways of dealing with things and there are aggressive ways.

Set the rules and if the rules are broken then commit the consequences. Some kids these days exhibit behavior that make us parents think they have a medical condition. Where as they have dicipline problems. A doctor isnt always right and will give you a textbook diagnosis.

Maybe boot camp or something to that effect. Dont let them control your life and dont attend to their every need. It gives your kid the right to demand anything and then have a tantrem.



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01 Nov 2005, 6:38 pm

Are you speaking from experience, jobo? :?

your advice if applied to a child who IS autistic is not only misguided but dangerous. please do some research on autistic spectrum disorders beofre jumping to conclusions - what works for one kid wont work for all.


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01 Nov 2005, 6:42 pm

well sound like the person who started this particular thread does not have an autistic child. Sounds like a kid with other troubles.

You are correct though, you cannot have that sort of approach with an autistic child.

Thanks.



01 Nov 2005, 7:00 pm

Sorry Jobo, I have to very much disagree with your advice. It sounds like Alex has already been diagnosed by medical professionals has having some significant emotional disabilities. None of us here are in any situation to say if Alex is autistic or has Asperger's, or not.

Tanja, please take Alex's threats seriously and immediately alert her lead physicians.

If she attends a public high school please contact their department of special services as soon as possible. Many schools will be able to meet with you immediately and see if there are any services they can provide Alex with (504 or an initial evaluation for special education services).

You are Alex's best advocate, dont give up, and you will both make it through this.



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01 Nov 2005, 7:12 pm

Jobo:

Ever fight with a cat. You get clawed.

Boot camp is the ultimate rejection. It is throwing in the towel.

As downright angry as I get at my kid, I don't think I'd send him off somewhere.

As one of my friends said, "My parents did that to my brother, and I don't think he's ever forgiven them."

Tanja:
Depending on the state you live in, there is all kinds of help out there. The main thing is to get a support group FOR YOURSELF, because you've got a sick kid, and she'll probably grow out of it, or it'll get better with a lot of help, but I tell you from one who has been there, you'd better take care of yourself!
RES



ILOVEALEX
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02 Nov 2005, 4:10 am

((((((((((ALL))))))))))))

OMG, I hadn't expected to get such replies. THANK YOU SO MUCH! I have been doing this completely alone for so long. My husband blames me, blames me for EVERYTHING. He says things like, you CHOSE for her to live with us. CHOSE?!? How do you CHOOSE to love your child. I don't recall it as EVER being a CHOICE! You all know that. It would be so much easier to turn and walk away, or send her to boot camp, where NO BODY will love her, where NOBODY will have her back, or keep her safe from herself. Poor thing is going through living HELL! And your suggestion to her is BOOT CAMP?!? I don't get it. Has this worked for you, I mean are you here because your child is hurting, or are you just being hurtful, to me? I don't care, it seems to me that the people here don't share this "kick em to the curb" philosophy. Sorry, I just needed to vent for half a second. She's not the only one that needs to get out some rage.
I am at a complete loss for what to do. I will take any and all suggestions REALLY, yes, even bootcamp, though I don't think that this is the answer. My daughter has been like this since birth. Some of the nurses thought that she was drug addicted when she was born, because she screamed and shook nonstop in the hospital. It was horrible that first week, then the following weeks were just as hard, this went on for at least a YEAR. I swear to God, I never did any drugs alcohol or even tobacco when I was pregnant. I smoked BEFORE I was pregnant, but that was it, and I quit as soon as I found out that I was expecting. The only thing that I could think of was maybe she was addicted to caffeine, I did EVERYTHING right, except that. I went to Denny's often when I was pregnant and I remember asking the waitress if the tea that I wanted to order was caffeine free and she said yes, only to find out after she was born that it DID have caffeine. Oh well, I am always looking for reasons that this could have happened. She was also jaundiced when she was born and her bilirubin score went up really fast and we couldn't get it down fast enough and they said that she could have gotten some brain damage from that. Then there was the fact that she couldn't take ANY formula as a baby. She was also sick for most of her first year, not tolerating anything. Poor thing I felt so helpless. She reacted poorly to her first set of shots after a week too. You'd never believe all of the different reasons that she could be this way. You're right, I blame myself, but so does EVERYBODY else. So, it's o.k.
I didn't CHOOSE this for her. I just want so much for her to have some friends, somebody to get her out of her room. A reason to live. I mean for a teenager friends mean EVERYTHING. And NOT having friends means EVERYTHING too. I'm terrified of losing her. She'll be down in her room, and I'll ask one of my other daughters to get her for dinner, and I will litterally, run past the kid on her way to get Alex and stop them so that they don't see anything they can't ever get out of their head. I'm so affraid that I will go to wake her up and she will be dead, but I'm more affraid that one of the other girls will find her. I don't have the luxury of ignorance, I KNOW that suicide happens. My best friend of over 25 years (since we were 5 & 6) killed herself after a bout of postpartum depression. I KNOW that it happens, and it is DEVASTATING. Alex lost a friend back home the same way ( we moved here a few months ago). We hid it from her for a long time, but had to tell her because she was going to call her. Not a phone call her mother would have appreciated getting I'm sure. The thing is, is Alex wasn't very surprised, and as scary as it was and sad, she showed very little emotion. When I told her that she COULDN'T call Ashley, she just got very stoic and said, oh, she succeeded didn't she? Still bothers me, but she hasn't talked about it at all. She was as close as Alex had to a friend, since she was little.
She still hasn't made any friends here, but we're working on it. She has several parapros on her IEP "team" at school. One in particular "makes" her eat lunch with her and a group of girls (all with different "challenges") every day. Apparently Alex wasn't eating lunch, because she didn't want anyone to notice her at school. She was just staying in her fourth period through her entire lunch break. Poor thing, I was wondering why she was losing so much weight. Her meds were changed and I was just chocking it up to that, as were her doctors. She used to horde food before the new meds (geodon, an antipsychotic). She was diagnosed with schizophrenia when she was just twelve years old, and given a medication that caused SEVERE weight gain. Not MAY cause, WILL cause severe weight gain. And by severe I mean 43lbs in THREE months. Losing weight for her is a good thing, but, I fear that it's all part of the depression. She's such a sweet girl when she's not feeling angry with the world, and directing it at me. It mostly falls on me. A few minutes ago her computer crashed with her report in it, and it was lost. It is due tomorrow and she was inconsolable. She was crying hysterically and throwing things in her room. I just got back from calming her down. She is asleep now, and now is the only time I feel "safe". Then it all starts back in the morning. Mornings are the hardest, as she would rather sleep than anything else, and will fight waking up tooth and nail.
O.K. now that I've rambled myself to the point of being almost unconscious (it's so late), I will try to address why I found this site today. Thank you so much for your suggestions. I cling on to hope that maybe a "quick fix" will work. That she will grow out of it. It seems I always have people around to tell me that it will never get better, that I grasp onto every new thing that comes along. That IS true, I'm affraid. Because the second that I give up hope, I'll stop trying. I need to have faith that there is SOMETHING something that will work. I will ask her doctor about a multi-disciplinary evaluation. I am at a point where there is NO extra money, and the kicker is, I can't even get a job because I can't leave her alone for any time especially with the other kids. The majority of the time Alex is o.k. but, when she goes off, she needs to be restrained not to hurt herself. It's nothing short of terifying to witness. Nobody else in the house can even get sick (knock on wood) because I can't afford any more co-pays. Her doctor told me that it was a shame that we didn't have welfare, because THEN and only then could we get all the help that she really needs. GREAT. She was hospitalized back in May, for suicide threats and psychotic behavior, she was saying "they" only put me here to ruin everybody's lives. She REALLY thinks that, how sad is that? But, who exactly are "they"?!?
I will assure you that financially I have exhausted all of our resources, it's not that they don't want to help, but she just doesn't qualify for anything. She will, as soon as she turns eighteen next SEPTEMBER! That really is a day late and many many dollars short.
Thank you for listening, and helping. Just knowing that somebody understands, has been there done that, and are making it through means the world to me. Whether or not this is aspergers, or the plethora of other possibilities that I've been given, I don't know, either way, it sounds like we're all in this together, and THAT is more than I had when I woke up this morning, so thank you for that.
Thank God for you,
Tanja :heart:



02 Nov 2005, 9:09 am

This is also my first time here and I found this site quite by accident while reading a news story. Check with your local mental health department and see if there is any counseling available for Alex. My son has been in counseling for several years but he is 13 and we just have to pay a very low co-pay woth our insurance. My son reminds me that when he has a "meltdown" to just leave him alone for a while but then he has never threatened to hurt himself. Counseling is ABSOLUTELY NECESSARY for Alex and you. Also, READ, READ, READ!! I read everything I could get my hands on and I feel very educated about Asperger's but I still feel very isolated alot of the time. Now I feel I have to educate everyone. ( Maybe that is bit of Asperger's in me)

Have Alex read the book "Asperger's...What Does it Mean to Me?" by Catherine Faherty. It has helped open comunication so much more between our son and the rest of our family. I hope this helps.



02 Nov 2005, 9:20 am

Dear Tanya,

Is Alex on any medication? Also here in Ohio where I am, we have several terrific clinics connected with the universities in Columbus and Cincinnati that specialize in Asperger's and the like. They diagnose and recommend treatment, counseling, provide resources, etc. Also , in Ohio we have a state department called The Bureau for Children with Medical Handicaps which foots the bill after insurance pays what they will. Generally this is for children under age 14 but do some investigating with your health department and on the internet and see what is offered in your area. And please!! ! get some counseling for you and your younger daughters and For Alex if she will go. This is for your own mental health. EJ's Mom, Been there and done that.



ILOVEALEX
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02 Nov 2005, 1:50 pm

(((((((((E.J.'S MOM)))))))))))))(((((((((ALL)))))))))))))))))))

YES, she is on medication. However, with the mulitple diagnosis that we have received, the question is, is it the "right" ones? I mean, if they can't even get a handle on what is wrong, how can they even begin to medicate it?!? I'm so confused. It's just overwhelming sometimes isn't it? I mean we love them, we take them to all of their appointments, doctors, counselors, and the like, and it just seems like some sort of a viscious cycle. I mean whatever I do, IT still happens, the meltdowns, the "I hate myselfs" How do I let her know that she's worthy, I tell her all the time, but, it's not enough, she still hates HERSELF. I don't feel like I get to keep her, one way or another it all feels so hopeless and inevitable. The worst part is I don't know if it is even right that I DO keep her. This disorder is destroying my family. I mean It's not enough that I hurt for her, my family has to self destruct too. I just want to shake my fists sometimes and say, ENOUGH! I'm done, I quit, CHECK PLEASE!! !! !! !! !! ! Then, I'm ashamed, ashamed of myself for even THINKING it. How can I just give up. My husband says that I made the decision to "keep" her for ME. JUST for me, that I didn't consider ANYONE else, even HER. He's such a loving man and amazing father (to the OTHER children) how, can he feel this way towards HER?!?
I don't get it. I wish that I had ANY more money left at the end of the month for ANYTHING else. Unfortunately, there's nothing left for counseling the other girls, and they seem "ok" (in comparison). I NEED to get a job, NEED to go back to work, but I just CAN'T leave her.
I have exhausted all of my resources for additional health care, but I will continue to look, I called about Katie Becket months ago. We don't qualify, nor do we qualify for CHIPS (Idaho's poor answer to kids with inadequate insurance). They are finding that it is poorly written and doesn't accept more people than it does. So sad. I need help, and I'm considering asking her counselor to cut me some slack. I told her that we would have to cut back to twice a month and Alex screamed and cried. It was awful, so THAT is just not an option. I've been selling everything that isn't nailed down on ebay, so that is helping a bit, but just to make ends meet. There are medical bills from May that I can't even look at anymore. One in particular for over $4,000 for a hospitalization when she lost complete touch with reality and there was just no way to keep her safe. Did they "help" NO, did they keep her "alive" yes, so of course it was money well spent. I don't want to be one of those parents that need support from places like solos, because my child committed suicide, I already belong to that website, because of how hard I took my best friend's death. But, as hard and devastating as it was to lose her, I can never even BEGIN to imagine what those moms there are feeling. They are there almost EVERY time I log in. They are stuck forever with the pain of what happened to their child. It's excruciating to read THEIR words of desperation. I still HAVE my child, but for how long I wonder. This keeps me hovering in a state of constant inner turmoil. Do you understand what I mean, the FEAR of what COULD befall Alex and our family, is a constant thought that I just can't seem to escape for one happy second. Everything will be going well, then the other shoe will inevitably drop, and back we are to the reality, that life changes on a dime.
Sorry, to sound so hopeless, it's just It's been a bad 'ALEX" morning, and then when I had to take her to school (because she missed the bus again) my window CRACKS all the way across!
No, I don't have the extra $250. in my bank account for the copay, so I guess I will just resolve myself to looking like a hillbilly, darkening out one of my teeth, and dying my roots black 8O :wink:
Thank you for yet even more wonderful suggestions,
Tanja :heart:

P.S.
Does anybody have any suggestions for medication that may actually work?
Alex is taking Lithium, wellbutrin, and geodon, not to mention some vitamins, and such.
Still, I'm even open to homeopathic alternatives, you would not BELIEVE how open my mind has become;0
T



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02 Nov 2005, 10:43 pm

first, STOP BLAMING YOURSELF FOR ALL OF THE PROBLEMS!! !! !! !! !! !! !! !! !
I know it's very hard to do. my son was diagnosed with everything in the book too, before they finally settled on aspergers. take the threats seriously. let your child know that a serious threat means hospitalization because you love her and you don't want to see her in such pain.
now, i'm not suggesting that hospitalization works for everyone ( they put my son on mood stabilizers because they thought he was bipolar....they tried to tell me that his mood had improved greatly, and that the meds must be working ( the morons told me how great his mood was after they had just finished talking to him about being released :roll: )....)
you have to do what's best for your daughter. it is such a tough road to travel. last year was my year from hell. but son is finally doing better. no more talk about suicidal ideation....and not so many temper tantrums. i've found btw, that once son is in a full-blown temper tantrum that it's best not to touch him and to try to give him space to de-escalate.
the major revelation which led to son getting back to where he used to be ( wasn't always this defiant, angry, depressed), was that he wasnt really sleeping. he was getting maybe 4 hours of sleep per night. sleep deprivation can really screw with a person.
best of luck, and keep us posted.