I don't know what to do...

Hartz75 · Jul 7, 2010

<r><s></s><SIZE size="3"><s><SIZE size="125"></s>My beautiful daughter Kerstin, what to say, what to say. I love her to pieces but she is more to handle then I ever thought possible. One of the main reasons I joined this forum is to get help in parenting her, since I cannot find any other support or help elsewhere. 
 
- I noticed her “issues” when she was about 1 to 1 ½ years; it is so hard to remember 
- She was never good with people especially men, even as a baby even her father could not handle her. I could never get my family to watch her because of the way she is, other then my sister. 
-She would get upset when she could not have things and cry (ok very typical) but do you know of a child who would cry for 2 hours because she could not have the blocks. I timed it, I recorded it too. 
- She has never given hugs to anyone in the family not even her father my hubby, other then me, I don’t know why. (Oh wait she will hug her older cousin who is 3 years older). 
- She will not talk to people, or look at them. 
- When she was younger she did not start to talk like most children with one word sentences, she talked with full sentences. 
- When she had an “episode” as I began to call it she would grunt, total communication was gone. 
- My daughter gets this Doctor Jekle and Mr, Hyde look; you can tell when she is going to have an episode. It is very hard to describe, but her face contorts and I would swear that my little girl is gone and there is someone else in there. Her eyes look blank and lifeless. She flaps her arms like she is having a spasm and screams. I always would talk to her or yell to try to get her to snap out of it 
- First specialist appointment - Kerstin sat there quietly, he then told me that I was a first time parent and was over exaggerating she could not be that bad, look how pretty she is? I had the video with me but he refused to watch it. He did suggest parenting classes and books. 
- My husband and I did the classes and read the books; we saw a small change in her after several months but nothing major. 
- Second specialist -was told she is a child that needs to be kept busy all the time. So we tried in fall, she was in so many things she was “better” not 100% but some better, BUT my house was a disaster and my younger daughter was getting miserable as Kerstin was getting all the attention and I was broke. I could not keep that up. 
-She is hyperactive and cannot sit still for too long. She cannot sit still while eating dinner, BUT she will sit still for a Disney movie on TV? 
- I have done research and have looked into Bi-Polar, Autism spectrum, and Aspergers syndrome. These seem to relate to a lot of what she does. I “feel” in my “mothers gut or mothers instinct” that something is wrong at times. I can’t explain it, but I worry about her future. 
- I do know I did some wrong, I cuddled, cooed, and tried to explain the world to her, instead of telling her NO. 
 
It feels like this is still not even getting to the heart of what I deal with daily, I can go into more but this is getting long so I have shortened it as I can. I can post more. I am sure I will think of more things as you all ask questions of me. Everyone keeps giving me books to read and every time I do I get upset. It is like everyone is accusing me of parenting wrong that it is MY fault she is this way, and yet my second child is totally opposite to her, she is more like other children. Every time I leave a doctors office I leave crying. So I hope to get some help through these tough years ahead before I loose my mind.<e></SIZE></e></SIZE><e></e></r>

mom2many · Jul 7, 2010

I don't have the time right now, but I am gonna come back.

Hartz75 · Jul 8, 2010

I also missed tellin you that; </SIZE>[/FONT]
As a toddler she would play with blocks and balls and regular stuff kids those ages do BUT she has this need to sort them. They must be in a particular order, size, color ect. If we took them out of order she would freak, grunt, stomp, but at the time I did not know why she was freaking because she won’t talk when she is upset. She eventually would play by herself so things were “her way”. I first though my daughter is great at playing on her own and I was able to do things I needed to, but now that she is 7 she still wants to play on her own so people don’t change things on her. (Just this weekend we went to a conservation park with my niece and younger daughter, Kerstin went to the beach picked a spot and would not play with anyone, she wanted to make her own hole to fish in. We tried to sit with her, even my niece and other daughter did but she shooed us all away.) I worry for her; she plays by herself to much. Friends come over and they start playing together but within an hour or so, I will find Kerstin playing by herself and her friend playing with Marrissa (my other daughter who is 4 years younger). Even when Kerstin plays with her Poly Pockets she has this need to sort everything first into piles and organize everything before she starts to play, all the people need to be lined up or it won’t work, and I will hear her crying because the toys won’t stay how she wants them to.</SIZE>[/FONT]

Right now I have been trying the ignoring treatment and sending her to her room.</SIZE>[/FONT]

Jeremy+3 · Jul 8, 2010

Hang on there, you have expressed concerns that your daughter has social issues, both with friends and family, so you're then deciding that when you punish her (for being upset) you send her to her bedroom, what is that going to achieve apart from making a possible social issue worse?

unreasonabledad · Jul 9, 2010

Your daughter is displaying many of the signs of autism. How have you researched this? She needs to be seen by a DR. The earlier autism is diagnosed the better chance that she can be helped. If you haven't already she needs to be seen by a dr ASAP.

Hartz75 · Jul 9, 2010

Jeremy, how does letting her get away with her behaviour going to help her? When she has an "episode" she goes biserk. What am I to do? Her social issues have nothing to do with me sending her to her room. I have only starting doing that recently, because before she would get worse when I gave her attention. When she is screaming and stomping but won't talk to me what should I do?? stand there all day and miss work, stare at her? I have tried talking to her, I get down to her level and talk to her try to get her to come out to me, she gets mad, grunts sometimes has hit me. Do I stand there and take it? when I did stay there she jsut escalated and escalated, to the point of shear exhaustion. So in the last month of sending her to her room to calm down, seems somewhat better. When she is queit I go up and speak to her and her demeaner is better and she vocalizes more.

I am not punishing her for being upset, I am punishing her for her behavour. Is it appropriate to scream and hit but not tell the person why you are mad? I am tyring to teach her to talk to me tell me what is wrong so I can TRY to help her. I don't send her to her room when she is playing by herself I send her to her room when she goes all freaky on me.

If you have a better solution I am all ears, please. That is why I joined the forum to get help, to get different perspectives so I can be a good parent and help my daughter be a good person.

Hartz75 · Jul 9, 2010

unreasonabledad said:
Your daughter is displaying many of the signs of autism. How have you researched this? She needs to be seen by a DR. The earlier autism is diagnosed the better chance that she can be helped. If you haven't already she needs to be seen by a dr ASAP.

I did research autism and that was my first conclusion and my hubby's. BUT the Family doctor does not agree and does not take my issues seriously. I see a naturopathic doctor as well and she does not think it is autism. They both say she does not show the Physical appearance of an autistic child so she is not. I have documents that say some children do not have the physical looks, they are more from the autistic specrum and tend to out grow it by early adulthood. So from being pushed off by doctors I was trying to handle it and hoped she out grew it. I am told it is the parenting and not autisum.

How do you parent autism?

I can only see a specialist if my family MD referrs me

unreasonabledad · Jul 9, 2010

<r>What physical appearance..? My nephew has autism, he looks like a completely normal little boy. If you saw a picture of him you would never know he has autism. It sounds like you need a new family dr, someone who will take your concerns seriously. I thought I saw you are in Ontario so I understand that can be easier said than done ( i live on ON too). I'm sorry if I sound preachy but this is a sore spot with me because of my nephew. I wish Dr's would take more interest in diagnosing this. 
 
I took this from the autism ontario website. Maybe you can contact someone from this organization that can help you proceed? 
 
Some markers (which im sure you researched) 
 
<SIZE size="2"><s><SIZE size="100"></s> Odd or repetitive ways of moving fingers or hands<e></SIZE></e></SIZE> 
<SIZE size="2"><s><SIZE size="100"></s>• Oversensitive to certain textures, sounds or lights<e></SIZE></e></SIZE> 
<SIZE size="2"><s><SIZE size="100"></s>• Lack of interest in toys, or plays with them in an unusual way (e.g., lining up, spinning, opening/closing parts rather than using the toy as a whole)<e></SIZE></e></SIZE> 
<SIZE size="2"><s><SIZE size="100"></s>• Compulsions or rituals (has to perform activities in a special way or certain sequence; is prone to tantrums if rituals are interrupted)<e></SIZE></e></SIZE> 
<SIZE size="2"><s><SIZE size="100"></s>• Preoccupations with unusual interests, such as light switches, doors, fans, wheels<e></SIZE></e></SIZE> 
<SIZE size="2"><s><SIZE size="100"></s>• Unusual fears<e></SIZE></e></SIZE> 
 
<SIZE size="2"><s><SIZE size="100"></s> Rarely makes eye contact when interacting with people<e></SIZE></e></SIZE> 
<SIZE size="2"><s><SIZE size="100"></s>• Does not play peek-a-boo<e></SIZE></e></SIZE> 
<SIZE size="2"><s><SIZE size="100"></s>• Doesn’t point to show things he/she is interested in<e></SIZE></e></SIZE> 
<SIZE size="2"><s><SIZE size="100"></s>• Rarely smiles socially<e></SIZE></e></SIZE> 
<SIZE size="2"><s><SIZE size="100"></s>• More interested in looking at objects than at people’s faces<e></SIZE></e></SIZE> 
<SIZE size="2"><s><SIZE size="100"></s>• Prefers to play alone<e></SIZE></e></SIZE> 
<SIZE size="2"><s><SIZE size="100"></s>• Doesn’t make attempts to get parent’s attention; doesn't follow/look when someone is pointing at something<e></SIZE></e></SIZE> 
<SIZE size="2"><s><SIZE size="100"></s>• Seems to be “in his/her own world”<e></SIZE></e></SIZE> 
<SIZE size="2"><s><SIZE size="100"></s>• Doesn’t respond to parent’s attempts to play, even if relaxed<e></SIZE></e></SIZE> 
<SIZE size="2"><s><SIZE size="100"></s>• Avoids or ignores other children when they approach<e></SIZE></e></SIZE> 
(testing for autism) 
 
 
<s></s> tests for diagnosing autism. An accurate diagnosis must be based on observation of the individual's communication, behaviour, and developmental levels. Because many of the behaviours associated with autism are shared by other disorders, various medical tests may be ordered to rule out or identify other possible causes of the symptoms. <e></SIZE></e></SIZE><e>[/FONT]</e> 
 
<s></s>The characteristics of a disorder vary so much, that a child should be evaluated by a multidisciplinary team which may include a neurologist, psychologist, developmental pediatrician, speech/language therapist, learning consultant, or another professionals knowledgeable about autism. Diagnosis is difficult for a practitioner with limited training or exposure to autism. And is sometimes misdiagnosed by well-meaning professionals. Difficulties in the recognition and acknowledgment of autism often lead to a lack of services to meet the complex needs of individuals with autism. <e></SIZE></e></SIZE><e>[/FONT]</e></r>

Hartz75 · Jul 9, 2010

<r>thank you, for your input and family doctors are an issue here, I have been looking <E>

</E> 
 
<COLOR color="red"><s></s><s></s>Odd or repetitive ways of moving fingers or hands 
<SIZE size="2"><s><SIZE size="100"></s>• Oversensitive to certain textures, sounds or lights<e></SIZE></e></SIZE> 
<SIZE size="2"><s><SIZE size="100"></s>• Lack of interest in toys, or plays with them in an unusual way (e.g., lining up, spinning, opening/closing parts rather than using the toy as a whole)<e></SIZE></e></SIZE> 
<SIZE size="2"><s><SIZE size="100"></s>• Compulsions or rituals (has to perform activities in a special way or certain sequence; is prone to tantrums if rituals are interrupted)<e></SIZE></e></SIZE> 
<SIZE size="2"><s><SIZE size="100"></s>• Preoccupations with unusual interests, such as light switches, doors, fans, wheels<e></SIZE></e></SIZE> 
<SIZE size="2"><s><SIZE size="100"></s>• Unusual fears<e></SIZE></e></SIZE> 
<e></e><e></e></COLOR><COLOR color="black"><s></s>My daughter does all of these, in fact this is the reason's that lead me to think Autism.<e></e></COLOR> 
 
<COLOR color="black"><s></s>New people yes, people she has already met NO. so she does not do this with the doctor, I was taught to forwarn my daughter of what we are doing and what is expected of her, we started doing that and she is better when she knows what is expected of her. So she was told many times over that you know the docotor or you know this person so look at them and talk to them, so I noticed she does not look away with family anymore, if she does not remember then and I do not give her a transitional warning then she will not make eye contact.<e></e></COLOR> 
<SIZE size="2"><s><SIZE size="100"></s><s></s>• Does not play peek-a-boo <e></e><COLOR color="black"><s></s>No<e></e></COLOR><e></SIZE></e></SIZE> 
<SIZE size="2"><s><SIZE size="100"></s><s></s>• Doesn’t point to show things he/she is interested in <e></e><COLOR color="black"><s></s>yes<e></e></COLOR><e></SIZE></e></SIZE> 
<SIZE size="2"><s><SIZE size="100"></s><s></s>• Rarely smiles socially <e></e><COLOR color="black"><s></s>No, my daughter actually has a hard time not smiling she is bubbly, she will look away while she smiles though or tries to hide her smile<e></e></COLOR><e></SIZE></e></SIZE> 
<SIZE size="2"><s><SIZE size="100"></s><s></s>• More interested in looking at objects than at people’s faces <e></e><COLOR color="black"><s></s>YES I always say Kerstin please look at me at least 3 times per conversation.<e></e></COLOR><e></SIZE></e></SIZE> 
<SIZE size="2"><s><SIZE size="100"></s><s></s>• Prefers to play alone <e></e><COLOR color="black"><s></s>YES<e></e></COLOR><e></SIZE></e></SIZE> 
<SIZE size="2"><s><SIZE size="100"></s><s></s>• Doesn’t make attempts to get parent’s attention; doesn't follow/look when someone is pointing at something <e></e><COLOR color="black"><s></s>NO<e></e></COLOR><e></SIZE></e></SIZE> 
<SIZE size="2"><s><SIZE size="100"></s><s></s>• Seems to be “in his/her own world” <e></e><COLOR color="black"><s>

</EMOJI></E><e>[/COLOR]</e></COLOR><e></SIZE></e></SIZE> 
<SIZE size="2"><s><SIZE size="100"></s><s></s>• Doesn’t respond to parent’s attempts to play, even if relaxed <e></e><COLOR color="black"><s></s>YES<e></e></COLOR><e></SIZE></e></SIZE> 
<SIZE size="2"><s><SIZE size="100"></s><s></s>• Avoids or ignores other children when they approach <e></e><COLOR color="black"><s></s>yes and no, if the child plays her way fine, if not she will leave. if she is already doing something she will shoo kids away so they don't ruin it, if she is at a play ground and someone asks her to swing on the swings she will run off with them, but I will hear her saying lets do this, this way or that way.<e></e></COLOR><e></SIZE></e></SIZE> 
<s></s>(testing for autism) 
<e></e><e>[/COLOR]</e></COLOR> 
<e>[/COLOR]</e></COLOR>I will try the webiste and see if I can contact someone, every little bit helps. she has gotten better with age, so I hope she grows out of it. My research said that kids in the spectrum group can out grow alot of these markers??</r>

Hartz75 · Jul 9, 2010

Oh yes I also thought Bi-Polar for a few years as my daughter seems to teeter tauter back and forth with extreme happy to, crying for no reason. When I do find her crying for no reason, I pull her on my lap let her cry and hug her quietly. When she gets quiet I try to talk to her about why she is crying but she usually shrugs and says I don't know.

The doctor asked about her pictures she draws but they are all happy and colorful, so once again I was dismissed.

She is also gets strange attachments to everything. Every peice of paper she has she will nto throw out. the McDonalds toys from years ago she needs to keep even if they are broken into pieces.

She has to get ready in the morning in the same routine every day, one day I forgot to turn off the hall way light and i found her crouched on the floor in a fetal position crying becuase of the light. Another day I said ok sweetie don't forget to brush your hair and teeth and she broke down in tears because she wants to brush her teeth first and her hair second. (this was after a half hour of crying and forcing her to tell me what is wrong) I told her I did not care what order she did it in as long as it got done. They said said that she does not want to be reminded, so for a few weeks I did not remind her and she forgot to brush teeth and hair so she started crying because I did not remind her. :arghh:

Jeremy+3 · Jul 9, 2010

Autistic children don't have anything physical about their looks because they are autistic, autistic children are more likely to suffer from epilepsy, but that is not a physical characteristic. He may actually mean her physical characteristics, such as facial expression, movement, e.g. rocking when sat down or licking objects/sniffing strange things.

You may find the link below informative, there are tabs for symptoms etc

NHS Direct, Autism-aspergers

NancyM · Jul 10, 2010

OMG I wish I knew what to say. I don't know anything about autism except a few general bits of information I read about or see on tV.

I hope not to alarm you, but I'm just throwing this out there,

Has anyone thought that maybe she had been hurt or abused by someone?

Just a thought. Some of the signs are similar, especially for a young baby who has no coping skills what so ever.

I wish you the best

mom2many · Jul 10, 2010

How does she behave at school?

If one doctor won't take you seriously, you go to the next doctor. You keep going until you have a doctor that will take your concerns seriously.

Next, most school district's have to do an eval if the parent request it. Do not let them have you believe otherwise!

Advocate for your DD, NEVER let anyone step in your way. Fight...fight...fight!

mom2many · Jul 10, 2010

I forgot to add that most districts have county evaluation programs. Call your local health and welfare and ask them about it.

Hartz75 · Jul 12, 2010

mom2many said:
How does she behave at school?

If one doctor won't take you seriously, you go to the next doctor. You keep going until you have a doctor that will take your concerns seriously.

Next, most school district's have to do an eval if the parent request it. Do not let them have you believe otherwise!

Advocate for your DD, NEVER let anyone step in your way. Fight...fight...fight!

School she is fine, very bright, mainly A's, but her teachers say she is the class leader, all the kids look to her for the answers to things, she is very bossy and if the kids want to play with her they have to play her way.

the doctors don't take me serious because the school has no complaints, but the school will only complain if there is disiplinary problems, she does not have disiplinary problems becasue if she does not do her work in class she cannot go out for recess, so she does her work. She is also left alone to do her work in the manner she wishes, if she gets some parts wrong or not complete the teacher gives her an opportunity to correct it, typically she will not correct it that is the only thing holding her back from an A+. Once she has done something she has NO desire to do it again or proof read, it is boring to her. But the teacher does not find that a concern :yikes:

I cannot keep going to doctor to doctor here in Canada, a doctor will not see me unless OHIP pays them, OHIP won't pay them if I am registered with another doctor (which I am) the waiting lists to get new doctors are years. I can't just call up a specialist my family doctor has to referr me and even then the specialist can deny me if the family doctors notes don't take me seriously.

The school here are not the greatest, I don't want the school to eval her because once "labelled" they try to push them into "trade" schools and they get left behind. The schools here don't help the kids, they help the smart ones only

I want to help her with her issues, how to deal with them, what is the "right or wrong" way to deal with it when she looses it? This way as she gets older she knows how to deal and cope and have a wonderful life.

This is the way I was advocating for her by seeking advice to help her. I don't belive in medications but I do believe in the right "training" she and I both need to know how to cope.

Hartz75 · Jul 12, 2010

NancyM said:
OMG I wish I knew what to say. I don't know anything about autism except a few general bits of information I read about or see on tV.

I hope not to alarm you, but I'm just throwing this out there,

Has anyone thought that maybe she had been hurt or abused by someone?

Just a thought. Some of the signs are similar, especially for a young baby who has no coping skills what so ever.

I wish you the best

I did check into the hurt and abuse as I was afraid of that, but I am pretty confident that has not happened.

Hartz75 · Jul 12, 2010

Jeremy+3 said:
Autistic children don't have anything physical about their looks because they are autistic, autistic children are more likely to suffer from epilepsy, but that is not a physical characteristic. He may actually mean her physical characteristics, such as facial expression, movement, e.g. rocking when sat down or licking objects/sniffing strange things.

You may find the link below informative, there are tabs for symptoms etc

NHS Direct, Autism-aspergers

I was told by the doctor that you can tell if a child is autistic right away by looking at them, so I assumed he meant physical, but maybe he meant facial, but she does not exhibit those according to him.
I will check these out and see if there is local support groups that might be able to offer assitance.

Shaunamom · Jul 13, 2010

Re: "No, my daughter actually has a hard time not smiling she is bubbly, she will look away while she smiles though or tries to hide her smile[/SIZE]</SIZE>[/COLOR][/COLOR]"

A good friend of mine had a child very like this, who also was very emotionally close and smiling with his mother and people he knew, showed emotions with family, but he still had autism.

It's rarer to have an autistic child who is able to show more open emotion, but not impossible. But she got a lot of 'no, you're just an overly concerned parent' in the beginning too, partly because of this issue.

Also, just as something that might add to this? Have you had her tested for any food allergies or celiac disease? My son had one aspect of what you describe, which made complete sense to me: looking at your child and if felt like there was someone else inside. Those massive rages, and to me, I'd joke that it was like he got possessed. Like he was a different person.

Since then, we've discovered he has food allergies. We take those foods away? It all went away. He has temper fits like a normal kid, but he NEVER has a case of the 'crazy rage' that he used to. But - he had no hives, no skin rashes, no stomach or gut problems. Just this emotional freak out thing going on.

Also, I have read of a number of cases that were diagnosed as autism and when the parents took their children off of gluten and casein (from dairy) all the autistic symptoms disappeared as well. It's not every child - the friend I mentioned said it could be heartbreaking, because she knew many other families with the problem, and one or two of the kids on this diet turned completely around, but no one else's did. Very hard.

It doesn't seem to always be an allergy - no one seems to know what it is at all, sometimes - but I look at it this way: if it worked, it would SO be worth it. And it costs nothing to try a new diet for a few weeks and see if it makes any difference to your daughter. Just change the food, keep a food log to track how she acts, and see if it correlates with what she is eating.

Good luck!!

bssage · Jul 13, 2010

Well. I'm gonna keep this short cause I'm on my netbook. This is my opinion and only a opinion.

Early in the post I was sure she was clearly autistic. Later with the information about her social interactions at school I question it. The autism spectrum is just that. There is a wide scope of behavior's that are included on the spectrum. But at its core is a social disability. If you want to really do a deep Autistic dive, I use IAN.com It is the interactive autism network. Its a clearinghouse for information treatments diagnosis ect. Its a research website. So they are not trying to sell you anything which I find refreshing.

As far as the ignoring when dealing with a "melt down" . A lot of people dont know what its like to l try anything. I do. I am not saying this will work for you but recently (this year) I have had a lot of success with earplugs. This is going to sound strange but they are high visibility orange ear plugs.

She can see me put them in. They immediately reduce the stress for me making the screams quieter. Shortly after she will begin to settle then give up in about half the time it takes to calm her without them. I dont really know why it works but it does.

Labels mean something to us not her. I had to fight this demon (read some of my older post in this section) The bottom line is you have to do what you can to get her the help she needs. Just forget about the label for now IMHO.

Same goes with the doctor. save the money ask for advice at IAN whatever. Sound to me like the are basing thier idea off of her ability to be social at school.

I think at this point it could be many thing from lead or metals to autism. I would be tempted to hang out in his (your doctor's) waiting room during her next meltdown.

There are a lot of other thing that concern me and my family that you have in your post I.E. family stress hardship for siblings and dad. But if I make my post to long it will be hard to read. I suggest you break down you OP to smaller groups of problems that you can get more specific advice. After all a little help is better than no help.

IMHO

mom2many · Jul 14, 2010

Good to see you bssage!

Any way's I agree with what he say's. I struggle with it being autism because of her ability to behave well in school, it would almost always present it's self exactly the same regardless of the situation.

Can you see a behaviorist? I think what you have is behavioural issue's, not saying it was anything you did or that she is a bad kid, but it sounds like she doesn't have the proper keys to dealing with certain emotions. They would also be able to help you figure out strategies at home to deal with some of these issue's.

I don't know what to do...

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