Trying to find an answer

Christy - posted on 02/16/2011

So I am hoping to find some help for my daughter soon!!! I think my biggest struggle is finding patience for my daughter. I am not known to be a patient person. It is one of my many faults. Its nothing I am proud of, but I am fully aware of it. I don't know how to find patience within myself to help my daughter. I am being completely and 100% honest when I am speaking here because I need to help her!! I am a teacher (in training I guess you could say). I don't have my certification, but I have been a substitute teacher for several years and just waiting to finish my master's degree, and the fact we moved to another state brings more classes. I have worked with special needs kids while substiuting and loved it!! I worked with children in Title reading (don't know if that is a known term), and have worked with severely disabled children. I found every bit of it rewarding and had the most patience for every one of these children. But for some reason when it comes to my own daughter I can't seem to find any. I feel like a terrible mother when it comes to her. At times I feel like I am at my wits end. This is nothing I am proud of!!! At this moment I feel like I have failed her. We both have gone through something terrible! The loss of her father at such a young age (for the both of us, I was 26 and she was 3). Today when the psychaitrist said she wanted her to go for the evaluation for asperger's, while I knew in my heart is what is going on, I felt a number of emotions that I dare not say!!! Emotions that I want to say, but know if I actually say them makes me a terrible person. Yes, I know, I need to see a shrink myself just for these thoughts!!! My daughter has no memory of her father at all. I took her to counseling after he died and they figured out that she is the type of person who should not be reminded of him unless she brings him up. At first I would talk about him all the time, trying to keep him alive for her. The therapist said it was like when we were in high school and everyone went to a party that we couldn't go to. You want to so badly to have been there, but couldn't. She couldn't remember him at all and by me bringing him up was like slapping her in the face every time he was mentioned because she wanted to remember him, but couldn't.
I'm rambling now and I'm sorry!!! There are so many things going through my mind at this point in time that I can barely sleep. I worry about my lack of patience and trying to find some so I can help her. I wonder if I could I actually home school my own child, while having a toddler running around at the same time. I feel lost and helpless still at this point, even though we are working on everything!!

Christy - posted on 02/16/2011

Thank you all for your words of wisdom and encouragement!!! We met with the psychiatrist today and I told her I needed to speak with her before anything happened, I told her what my daughter's teacher told me about her social behavior and what my daughter told me about hating school. She is sending us to the Merck Clinic here in Pittsburgh for an aspergers evaluation. The first available appt. they had was April 5th. So we wait for that. On the other hand, the psychiatrist had wanted her to start seeing a therapist, but she told me they would call from one of two offices. They never called me. I told her this and she was mad!! Don't you know before we got home I had a call from the therapists office to schedule an appt for tomorrow!!! So that is good news!! I also had a phone call from my daughter's teacher today. All of a sudden within the last week and half my daughter has decided to not do her homework. This is so unlike her!! I never have to double check her assignment notebook. She has always told me when she has assignments and when they are due. And she has always done them! I don't know what has changed. I know that her medications were increased about two and a half weeks ago. Could it be that the medications once combined are having an adverse effect? I'm not sure. The psychiatrist just gave me new scripts to increase the medication yet again. The teacher is aware of the medication increase so she is going to call me in two weeks and let me know what she has seen. Now that I have been made aware of what is going on in the classroom I feel that the teacher is very eager to help my daughter and work with me. But why did it take this long? I am also going to be talking to the guidance counselor at my daughter's school tomorrow as well. I'm hoping for some type of guidance (no pun intended)!!!

Kelly - posted on 02/16/2011

Make a morning schedule. Then give her rewards when she follows the written schedule. Socially, I have no idea, my 11yo daughter is in the same boat. She has Aspergers and Ash

Moira - posted on 02/16/2011

I am totally on the same page as all of you and started doing research on why they are like that and found this absolutly stunning book called the Indigo Children written by Lee Carrol and Jan Tober. There is much more available on the internet but just read this book as all the answers are in here and then try following the examples. My 1st child is 6 and diagnosed with ADD about a year ago. He is definety and Indigo Child and since I have been doing research and following what they teach you my life and his life has been a pleasure cause we understand eahc other now.
Not 1 days ritalin worked!
Good luck to you all!
Moira

Daniella - posted on 02/15/2011

Too many long replies to weed through them but I wanted you to know, even if it seems or feels like the issues are just social in nature...this age is the time that adolescence and aspergers/PDD etc slam into each other with the force of 2 jumbo jets at 35,000 feet. I would pursue an evaluation by a Neuro-Psychologist who may have a bit more detailed knowledge about PDD and may be able to offer you some addition information about your daughters learning strengths and needs. (my daughter did fantastic in school but we only found out through the neuropsych that her visual-spatial skills and visual memory are in the mentally impaired range-now I understand why I need to tell her to pick up each thing on the floor in her room and how the school can modify how her knowledge is assessed and assist in developing these deficit areas for maximum functionality in life)

With regard to an IEP...an IEP is the only way you gaurantee that every teacher, administrator, aide, whatever, in your school knows that A) your child has a disability, and B) that they are responsible to assist your child in developing the skills they will need after exiting high school. Unfortunately, for most people, being able to function socially is a pre-requisite for most jobs. Being able to function independently is required for post-secondary living and schooling. You have a lot to gain from getting an accurate diagnosis and an IEP and pretty much nothing to lose. I beleive, although it can depend on the state, that even if you homeschool your child may be eligible for related services at district expense, including counseling, speech, OT, PT, etc. In addition, an accurate diagnosis opens up additional supports, particularly for post high school through Medicaid waiver services, OMPDD, DOH etc.
Good Luck!

Kristin - posted on 02/15/2011

Two of my three children have Asperger's Syndrome. My eldest, and only son was not diagnosed until he was 12, and like your daughter, he has a lot of trouble remembering daily things, and socialising. School was very stressful for him, because he was bullied so much. He loved the classes, and still loves learning, but the social aspects left him with low self-esteem. He dropped out before finishing Year 12.
My youngest girl also has Asperger's, although at 17 she is still not officially diagnosed. However, I can see the signs, and her GP agrees with me. Last year she had some other medical problems which meant I had to begin home schooling her. This year she is in Year 11, and I have seen her confidence soar. Home schooling is working for her. I chose a path where she calls in for classes, an actual teacher teaches her and she is also able to interact with the other students. She has friended some of them on Facebook as well, and still sees her one main best friend who she has known since primary school.
I now wish I had home schooled my son as well, maybe then he would have finished high school and had more confidence. Christy, you can always try home schooling to see if it works for you and your daughter, I suggest you research what is available in your area. If it doesn't work, then your daughter can always go back to school. Just make sure she understands right from the start that that is what will happen, (I've found Asperger's kids don't like sudden changes or the unknown, as long as they know exactly what will happen, they should be right with the changes.) As for the daily routine things, draw up a chart for her, for each activity, so she has a visual reminder of what she has to do...outlining each step will take the pressure of you doing it each day.

Every child is different, so you may have to try a few things until you find what works for your daughter. Good luck.

Melody - posted on 02/14/2011

My daughter will turn 17 this spring. On her list of what she wants for her birthday, she has listed, to be popular with the other girls and to be like other girls. I had to sit down and tell her, that is not a wish I can grant, no matter how it breaks my heart. That she has to continue to learn to behave more apporprietely so that other's will be more accepting of her. When she used to have tics and odd manners I would tell her. When you growl (or whatever) it scares other people, they do not want to be around you if you scare them. You have to try not to do that around people.
Even now, when she is obsessing, when she asks the same question for the 1,000th time. I will tell her why people will get tired of hearing this and not want to hang out with her, that if I , who love her , get tired of it, anyone would get tired of it.
If video games make her tic all the more, I would have the dr. look into epilesy also. As flashing lights and the quick movements of video games can cause a reaction to someone with epilepsy.
Not gettting a diagnosis is not to your daughter's benifit. She needs professional intercession as quickly as possible. In some states she will qualify for therapy, long term health care and maybe even respite and habilation care.
Find some support groups , then seek out other parents with girls in her age group. My daughter has some life long friends from both her special preschool and from therapy. She also has some good friends who have provided habilation and respite care.
Children with aspergers usually respond well with adults and since adults mostly lead the conversation, she can get many communication skills from spending time with adults whom you trust. My daugher loved shopping trips with her older sister-in-law. Hanging out with Aunts,one on one and making special outtings with children who she relats to who are in similar situations.
The problem is, that as much as she wants have girlfriends and be popular. Sometimes, when I point out another girl who is similarly socially challenged, she shows little interest in being friends with that person...

Diane - posted on 02/13/2011

Ugghhh yes yes I can talk forever!! I mentioned my 24 year old, then realized we have a lot more in common. Kenny who is 24 lost his dad at the age of 6. So my first husband died in 1993 and left me and Kenny all alone. He needed a lot of therapy to get over anger issues from it all, and I think even now he is stuff suffering. I think with your daughter you need to do things that will allow her to talk about her feelings about her dad being gone. I think maybe a nice journal, the ones that have a space for drawing a picture on the top and writing on the bottom. Maybe once a week or more you can sit down and talk about daddy, and maybe write something nice she remembers and draw a picture to go along with it. Like.. our trip to the zoo! Have her write somethings she remembers from that day and draw a picture. But, not only good memories, have days where you bring up a sadder topic like a day dad was sick, or stuff like that if he passed due to sickness. The day of the funeral... I think it helps them think about it all and talk about it. I can tell you that it will make you really sad, but its probably good for you too. I also would do poetry with Kenny, as he really like poetry. He still uses poetry to this day to write about his feelings.
With Cordell,since his dad was just a jerk I have to think of ways to help cordell with his anger over his dad. I try to bring up positive moments in our lives to help him not to be so angry and have so much hate for his dad.
Sorry I talk so much... Just well I could write a book on my life. Might be called What Not to do? hahahahahah
Take Care
Diane

Diane - posted on 02/13/2011

Cordell's MAIN issues is socially, and in the end it all trickles down and messes with all aspects of his life. On the family, I personally have been separated from my husband since 06 but before that he was always on me about how I was crazy, and there was nothing wrong with our son, and that I had munchhouser and I just wanted something to be wrong with him. My family at one point did not see any issues, but I can tell you that as the years have passed, they see the difference over him and an average child. One of his biggest things is empathy for others and lack of interest in playing with other children. Do not let your family stop you from looking further into Aspergers, as to me things seem to show up more and more each year and it might affect her in school more so as time goes on.. If she is feeling bullied, or like an outsider she may not try her best in classes, and of course depression sets in too. Cordell is super smart, and he was smart in the regular school, but now home cyber schooling allows me to hone in on what he really really likes and spend more time on them, or even spend more time on subjects that he is struggling with. Also, once you get a diagnoses of Aspergers, then you can get your child into some social type classes, Right now I am trying to get my son in a social class held in stroudsburg PA where the kids playact how to talk to each other and I have seen improvements in another little girl so I want that for my son. the school is sending out a speech theripist even though he has no speech issues, it is connected to social skills so sometimes you have to go through all these evaluations to get your child what they need.
For me, I could tell something was different with my son. I have an older son who is 24 and Cordell is not 10 but I could see the differences. I mean I know that all kids are different but I could see the social stuff, the isolation he likes over a regular kid wanting to play with others. I see also now he seems to enjoy younger kids, as kids his age pick on him and stuff but the younger ones love him and he makes them laugh...
Another thing I think is so funny is how he analyzes everything. He has always said he hates babies, and his reasoning... is that they get all the attention! Cracks me up! Then I see him all goo gooing over babies so go figure!
Anyway, never give up and well....sometimes it might seem like u have to fight to get what she needs, just do not stop fighting! We as the parent know that something is up! If I listened to my family, he would have never gotten the help he needed. I saw the difference as a tiny baby when he did not sing the songs with me like your average baby would do. He loved me to sing to him, but I could never get him to sing with me. So many little things. They all add up.

Jennifer - posted on 02/13/2011

one more suggestion there is a book i do not know the author but i do know she is a teen with aspergers the i believe the name of the book is " the things they dont tell you about middle school" my assistant principal actually gave it to my daughter last year it tells of how she learned to "fit" in even if she didnt know why she needed to my daughter loved it

Jennifer - posted on 02/13/2011

I have to tell you it was like reading my daughters story she just turned 13 and while she does not qualify for an aspergers dx she has many traits and her brother has classic autism..my daughter also has OCD and the rest of my daughters story you just wrote...we to considered home schooling i think its an individual choice i actually went as far as pulling her out and doing all the paperwork...she was bullied so badly i now drive her to a school every morning out of district we actually had a very rough year there to tho as she just doesnt know what to do with other kids when she was younger she would take so long setting up the "play scheme" noone wanted to play with her by the time she was done...it is still very sad some days...we went through many many drs...and therapist...she is doing much better today she asked me to give her a chance to try school....which i did we also got her on meds for bi polar disorder and as well as add with my son i went a completely natural route which has worked miracles my daughters is more chemical tho and the natural route just had no effect...it has been a year since she was hospitalized and we are seeing amazing changes i am breathing a sigh of release for the moment as every time her school calls now i dont feel my stomach go into knots...for your daily routine issues i would suggest a PECS schedule doesnt cost alot just take some pics of the routine and tape it to something even poster board in the order in which it needs to be done and have her check the board noone needs to know shes using it as it will be in your home..for school i would suggest her having a card made that is for her and her teachers they each have one if she is struggling either she or the teacher give the card and then she can be excused without everyone knowing to either the counselor or resource room (if the school has one) she can then be given some down time to regather herself and socially noone has to know she is struggling but the adults...sorry i rambled but this really hit home..jenn

Christy - posted on 02/11/2011

Thanks Diane!! I will definetly look into them! My daughter hasn't been officially diagnosed with Aspergers just yet. So there is no IEP yet. I am not certain if an IEP is needed if she only has social issues. I'm familiar with IEP's and how to write them up from a teachers perspective. What I'm not certain of is when they are needed. She does not struggle in school other than socially.
As far as being diagnosed.. I see it, the psychiatrist feels thats what is going on, the teacher said that she can see it. I am not getting support with this diagnosis from some of my family. They are trying to come up with excuses for her behavior. They are saying that since she was an only child until she was 9 that she was use to having all of the attention and now she isn't the center of attention this is why she behaves the way she does. They say that since she never really dealt with her fathers death that is another reason. I was so frustrated last night with them. Those reasons have nothing to do with the way she is socially with other kids. She is a good girl and does not give me much trouble as far as talking back or misbeahving at all. My sister, who had never even heard of Aspergers until I mentioned, says that she did some research and that it doesn't fit. I explained to her that if I felt that it didn't explain a lot of things going on with her that I would never just settle for that diagnosis. I would never want my child labeled with something if it was not relevant.
I have a lot of research to do on Asperger's and some major decisions to make so that I can best help my daughter.

Diane - posted on 02/10/2011

Oh, and on reminding stuff.. well its just a part of life. I have to tell my son to brush his teeth and comb his hair everyday. Nighttime, I have to tell him to brush teeth for bed. I have tried the charts for care, but he just forgets about the charts.
Now a chart worked for him with his bathroom issues somewhat. He has functional fecal retention and I have the chart that he puts up a sticker each day that he poops and gets a dollar for each day he poops.

Diane - posted on 02/10/2011

Personally I have been using Commonwealth Connections Academy *Home *Cyber School for my son Cordell. He was not doing so well, and socially he is just not interested in being with the kids. He is off the wall smart, and actually because of all his other issues he was not doing as good in school as he could or should have been doing because they do not have the patience or time to give what he needs. I have found that since I have been cyber schooling him he is achieving so much higher then when in regular brick and mortar school. I was in PALCS cyber school, but they did not have any real social stuff going on so this year we started with commonwealth connections academy and the schooling is better and they have many class trips to take the kids on so that they get some socialization.
I find that his tics, yes he has tourettes get really bad when he is playing video games and I have to limit the times he plays xbox or wii so that the tics do not get overly out of control. The school, does she have an IEP? Im not sure what school system she is in but they are supposed to help you with all of that. Stroudsburg school system really stunk at it all! I so hope that you are in one that really takes an interest in the special needs kids.
Therapists are so not for homeschooling or cyber schooling but I can tell you that my son is doing so much better socially, mentally and just all around. Kids were mean to him, hurt him and actually he was touched in a restroom by a boy in second grade! Its just mind blowing how kids that are molester types can hone in on kids that are weak or scared or gullible.
Follow your gut if you have to time. Commonwealth Connections academy is the Pennsylvania chapter but they are nationwide as well. This one fits my son the best but PALCS was also a good public cyber school.
I did it for my sons mental well being and he is just thriving! Plus I feel better knowing he is ok now.

Diane

Christy - posted on 02/10/2011

I forgot to add that next year she will be in 7th grade and at our school district that means she will go to the high school! I don't feel that she is ready for that what so ever. Even if I were to home school her for a year or so, just to make sure she has the social skills to make it in high school would be better than like you said Melissa....serving her up as lunch! I think we need time to work with her and teach her these skills before she even attempts high school at such a young age!

Christy - posted on 02/10/2011

I too am a huge fan of charts! I make charts and lists for pretty much everything. I did kind of "chore chart" for her with all of the steps she needs to take in the morning to get ready and the things she needs to do in the evenings. This didn't seem to work for her. Instead of asking her did she brush her teeth, or what have you, I was constantly saying...did you check the chart. It was no better for myself that is certain. I have yet to find something to help her remember. We are seeing the psychiatrist on Wednesday and I plan to meet with her teacher after that to see how we can help her in class. I went today and got several books about aspergers and about teaching social skills. I'm hoping I can help her!

Melissa - posted on 02/10/2011

If your daughter is taken out of school, she may do better socially. It may seem counter-intuitive, but throwing a lamb into a lion's den doesn't make it a lion. It makes it lunch. If she is homeschooled, she can be enrolled in various activities that support her interests (my daughter's primary interest is dogs, so she takes her dog to training classes, and out to places where she learns to socialize with people through her dog). That's just one example, of course. There are a lot of interest-based groups, as well as general homeschooling groups out there.

As far as the time management and organizational issues go, it's not unusual to have a person who is obsessive compulsive or perfectionistic have chronic disorganization. If she is a systemizer as opposed to an empathizer, the idea of getting everything in her life to fit in their own little time and space niches can be overwhelming. That can lead to more indecision than she's already prone to. She has too much information and no where to put it all even if she had the time to sort through it! I like the idea of charts, but if she is reading well, a more discrete option would be a simple checklist she could keep in her backpack and refer to as necessary. A morning list might include the order she needs to get things done before school (get dressed, make bed, eat breakfast, brush teeth, brush hair, wash face, gather school items, go to bus stop) and the evening list would include not only going to bed items (take bath, brush teeth) but items to help her the next morning as well (pick out clothes for next day, take dirty clothes to laundry room, pick up personal items from floor, pack backpack and put with shoes by the back door). If those go well, you could also make her a school list (stuff to remember to take and bring home that could be modified daily) and a weekend list (chores and errands that need to be done).

Katherine - posted on 02/10/2011

I'm a big fan of charts. I would make a chart with her routine and when she's completed each task have her put a sticker on it.
At the end of the week do something special with her. Don't ever focus on the negative, just the positive. If she doesn't get a sticker oh well, move on to the next.
Make the goals fail proof to the best of your ability.

Now as for the social aspect....there is a place called meetup.com.
You can find mom groups with her age kids in your area. That may be a starting point.
If they suspect Aspbergers there are groups for that too.