"Can I call you Dad?."-Z's story

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Have you obtained a real evaluation for Cris? That seems to be missing in your story.

Since I'm an aspie, I really don't understand the religious-social dynamics of your story. My first impression was: why didn't you get him evaluated at 2 or 3?

seriousgirl,

Like I said we are in the boonies. Very rural. We took him to a phychiatrist in a nearby town. This doctor gave a loose diagnosis of ADD/ODD (?)/Asperger's. He had to put something down on paper. He didn't sound very concrete about it though. He wanted to try the adderal for the ADD symptoms.

We didn't get a diagnosis when he was younger for the reasons that in our religious circles things like mental disorders, autism, or any kind of disorders were thought to be caused by demonic spirits or that if you prayed and didn't get a healing then there was some secret sin that you had not repented of and God was punishing you. People didn't want to talk about these disorders. I actually had people tell me my son had demons. My immediate family thought there was nothing wrong/different and that any problems we were having were my husbands and my fault as bad parents. These last few years have been very frustrating for me. I feel like I'm going crazy some days. I am still trying to detox from my religious experiences. There was a lot of fear based manipulation that happened and it has been hard to learn how to live differently. I just want my kids to be happy, to have friends, and to be loved.

amoseli, that's what I sort of thought, but wasn't sure. You know, AS isn't so much a disorder as a difference. Everyone has AS traits, but they are just concentrated in a person with AS. It is also called Engineer's disease and is very common in places like Silicon Valley. There is also a fine line between AS and genius. Many people believe that Einstein had AS. I'm glad you are out of circumstances where differences are perceived to be demonic when, in fact, some people are just born different. I was raised with a lukewarm form of Methodism where the message was always love and acceptance. I really don't understand judgmental religion very well.

Good luck...

Seriousgirl,

I am so glad to be out of it too! How can you truly love people if you are constantly judging people?

Cris' dad has a degree in electrical engineering! He has pretty strong Asperger's traits himself.

One thing I have wondered as I have been trying to understand my son better is, from an adult asperger perspective, what helped you growing up or didn't help you or what do you wish had been different? (I'm assuming you are an adult? )

Maybe this should be a new thread?

Last edited by amoseli on 19 Apr 2007, 10:21 am, edited 1 time in total.

I have not, but I know my inlaws have. They where really high up in the local politics of their anglican church, a very strong "church" background for both, infact my husband has uncles who are ministers. Anyway, the church went through a series of scandles in the early 90's. First a police officer came to the door and suggested that my husand (there child) may have been sexually molested by the minister. (He was not) But my husband remembers coming home to the police and his parents in the living room, asking him questions about his relationship with the minister. My husband was an alterboy, and went on the church "retreats" lead by this pedophile. Apparently some other boys where molested. The guy probably used boys like my husband as their cover, in case he was ever called out on it, he would have families swear up and down that it "could not be true". Anyway, he went to jail, the church got a new minister.

The new minister ran off with a married woman from the parish!

They got another new minister. This one ran off with the church coffers!

They got a new minister. This one had "different more progressive views" then half the church was able to tolerate, and was run out of town. The church split. My inlaws had enough, and elected not to join either group.

From what I heard, it took a huge toll on them. They where so closely tied into it all, it was their social life, their hobby. My FIL was a decon, my MIL taught Sunday school. to leave, was a huge "loss" for them. However they felt that what they had, was now gone forever.

Often ADHD is co morbid with AS, therefore if you treat the ADHD, the "symptoms get better". however, these sorts of problems can be caused by the AS itself, and are NOT ADHD. You cannot treat the symptoms of AS with meds.

I put my son on Ritalin when he was in Grade 2. It was terrible. He started ticing even more, and reacted very badly too it. (became zombie like, could not absorb any information, learn anything new). I actually believe that it was the reason why he FAILED grade 2! I took him off, the school flipped out, because as long as he was drugged and seated, it suited their agenda. He nearly had a nervous breakdown at 7. We had to do something, and pulled him out, HS'ing him for 4 years. Would it be possible to HS your son? Just the one? I think it saved my sons life. He was very similar to your son with a lack of interest in school work or learning, so we unschooled, and in the end, he went back to school this year with a verocious appitite for knowledge aquisition.

I would be very very careful with any stimulent drug with an AS child. It frequently does not help, and does more harm then good.

One thing that may help is Strattera if he has attention problems or anxiety issues. Although they need to be a certain body weight and age before they can start. It is Not a stimulent, and therefore reacts differently in their bodies. I don't know what I would do with my son if it where not for the strattera.

Is it possible for the school to get a one one one support worker for him right now? To help set clear bounderies with what is exceptable socially? This would really help, basically as behavior intervention, teaching him what is and is not appropreate social interaction.

Anyway, I'll roll this over in my head today, and maybe back later...

Earthcalling,

yes it has taken a huge toll. It has been very hard but very freeing as well to go through this "split" I have to admit I am very gun shy now with church stuff, but I miss my friends. Our closest friends moved away last summer and now my sister who I am very close to is moving away with her family this summer so her husband can go to grad school.

Yes, I am not happy about med stuff, I've always been a bit paranoid about meds in general myself. We will not keep using it if I don't see any improvement.

Our schooling situation has been wierd because our school is very small, has a very high staff turnover and no money to work with. The special ed coordinator we first worked with is gone now and they really didn't get a replacement, someone is just filling in for now. The elementary prinicipal and superintendent are leaving this summer who knows what it will be like next year!? I have talked with one of the teachers who Cris might get for next year and she is planning to be there, I really like her and I think if I can work it out with the school to have Cris placed in her class then I thought I would try to spend some time with her education her about asperger's and about Cris' history.

Homeschooling had been in the back of my mind, but really the things I worry about are not academics so much as peer interaction and how to relate to others which if I kept him at home he would not be around others as much. It is hard to know what to do. He loves learning new stuff, but he hates getting in trouble all the time. This school has very strange disciplinary measures that try to fit everyone into the same mold. It just doesn't work. Kids are all so different. I have tried to get help, but people don't return my calls, or don't get back to me. I have had to be a bit pushy to get what we have accomplished so far. I am not very good with this, niether my husband or I are very confrontational people. I'm learning though.

We do not have an IEP, what do you think about them? Right now we are just trying to work with individual teachers and have asked about limiting some homework. I ended up writing a note to the principal to ask that they try to come up with more positive reinforcement for Cris, because he was becoming very discouraged with all the negative reprimands and beginning to think of himself as a "bad" person. I was so saddened by this! He is a wonderful kid, fairly compassionate, very honest, and wants to do the right thing, but doesn't know how. He is very literal and ends up saying things that come across as rude sometimes and he tends to argue a lot, things just don't make sense to him a lot of the time. Things we take for granted should make sense to others.


"Is it possible for the school to get a one one one support worker for him right now? To help set clear bounderies with what is exceptable socially? This would really help, basically as behavior intervention, teaching him what is and is not appropreate social interaction."

This would be wonderful! I asked for some help with social stories and all they did was send some examples home to me to try to figure out on my own and then try to talk the teacher into using them. It was a bit discouraging. Aren't there teachers that go to school to learn how to help kids with this kind of stuff?

You NEED an IEP. And if they won't return phonecalls, write letters. These have to be filed and cannot be ignored as easily. They are "proof" you are contacting about an issue.

someone stateside I am sure will be along to advise you on "how" to get attention with the No child left behind stuff and "free and appropreate education".

One thing you may have to do is Educate them on what your son needs. I have a stack of papers enough to fill a 4 inch binder at school. You need to be carbon copying everything to the principle and special ed. If the teachers are not working with you, you NEED to escalate. I had the same problem with bullying.

You may need to "educate" them on AS and how it effects your child, how your child thinks. I am going to PM you copies of three letters I recently sent to my sons school teachers doing this, DEMANDING how they handle his emotional development. My issues I am sure are different, but the theory is the same. They don't understand him, and they have to be taught what you expect from them.

I could write a lot more, but I need to go now, I'll pm you later. In the meantime, it may be better to start a separate thread about Chris, as this thread seems to have been "hijacked!"

This way you can keep all your struggle and advice in one section.

There is such a thing as "negative social interaction". Good constructive socialization is important. Negative socialization is not going to do your son any good, it can cause him to "act out more" and it damaging to the ones self image.

With my son, by pulling him out, we where able to provide one on one social support, and control the type os socialization he was recieving. Many young aspies just can't put up with hours and hours of socialization, they need it in smaller doses. More is not always a good thing.

We would go out with small groups of homeschoolers in the area. I was able to catch his behaviors and correct them on the spot. We could follow up later too, reviewing what we "learned" from the day out socially. "so, why did Bob get mad at you? .... "Because I took his toy". What should you have done instead?" "ask if I can play with him ... find something else to do .... keep my hands to myself...."

We joined a cub pack. My husband became a cub co leader to help coach and mentor him. He also helped keep the bullying at bay. (I did beavers on a separate night, and we usually had another obligation due to it every week, so it was three nights a week, (exhausting)). Still, it really helped. My son could see in the 1 and a 1/2 hour meet, how his behavior caused others to react. Recieve coaching on what he should do differently, apply those lessons and over time, see the change in his acceptance!

I also made sure that with his new "friends" our house was the primary hang out house. This way if I could hear him doing something "annoying" or "provoking" that was upsetting a friend, I could pull him out of the room and tell him that his behavior was upsetting his friend, and he needed to stop. He really could not see it on his own.

He also learned to model himself off of adult interactions, and not 6 year old "underpant" discussions primarily. Long term this will help.

Still, as kids grow, the tolerance for differences decreases in middle school. My son has lost a lot (all but two of his friends dispite my running interferance). But, going back to school this year, there is a definate improvement. The other kids don't get along with him because his body language does not match his verbal language, and they know there is something just kind of "off" about him. Not because he is picking on them, or annoying them. We have had problems with bullies. But, not NEARLY what we did before, and I am sure it would be much much much worse if he had remained in school being the negative hostile environment it is. Now, the Vice Principle can come in and Law down the law with these kids, and when he asks "what gives you the right to push him around... what has he done to you?" The answer is "nothing, and I don't have the right". That helps too with getting help and support at school.

So, don't worry about the "quantity" of socialization your son has. Worry about the "quality".

If you do keep him in school, in our area we have "educational assistants" they are not full teachers, usually just have a two year college diploma, but they "help" or "assist" a child depending on their disabilities. These may be social (like our kids) acedemic, (LD's) or physical (physical disability). Some also just help with developmentally delayed kids, assisting them in participating as much they can, and making sure they stay fed and clean while in school (bathroom assistance, diapers if needed).

Maybe 1/2 days would be a good idea right now?

I am going to PM you some letters though I have recently sent to my sons teachers, regarding what he needs to help them better understand him. It has taken 6 months of writting letters and meetings, but they are finally "listening" to me! I suggest a moderate shade of pink or blue or green paper. This way, when the school teachers / admins see your letters, they will know it is "you again". It sets an urgency subconsiously too. (Just make sure it does not interfere with readability) As the stack of coloured papers mounts, they will be willing to do anything to "make it stop"!

Wow, Earthcalling, thanks so much!! ! Just talking with someone who understands is helping me very much. Thank you! For now I will read your letters and PM you or start a new thread. We are visiting relatives this weekend, so maybe I will visit more with you or others next week. Thanks soooo much! Sorry about the highjacking! I'm not very good with this forum stuff or computers in general!

I don't think that Corzars will mind! It seems people around here are pretty relaxed about forum "ethics", I just think having your own thread will get you a place all your own dedicated to your family and son only!

Yes, I'm an adult. I have 2 teenagers: one with AS and one with PDD-NOS (NVLD). My father probably had AS and his side of the family had many brilliant, introverted people on the tree.

The thing that helped me most was being allowed my alone time with my interests, not being pushed into groups. I had only two friends growng up and I really didn't want any more. I got all the socialization I wanted with just two. I was never forced into organized sports or any other group and I would have resented it. I don't think my parents could have made me to do it.

The fact that my aspie father was a binge alcoholic made my life much harder. I grew up insecure and had terrible nightmares until I was about 30. I hated school, even though I was in the gifted class in elementary school, because I didn't understand the other kids or the teachers. I was particularly frightened of the teachers as the used corporeal punishment. I was very, very quiet in school and not bullied so much because I was bright and attractive.

I couldn't handle high school and simply stopped going to school in the 10th grade. Later, I went to university and got a degree. I enjoyed college much more than high school. I think I would have been happier home schooled. My IQ was tested at the far range of the scale when I was 6, in the 140s. School bored me to tears.

No one knew anything about AS back then and since it ran in my father's famly, my family didn't see me as particularly strange. I'm sure the other kids in school did, but I never realized it until about the 5th grade. I was always an avaraious reader and appreciated my mother taking me to the library. I still read about 10 books per week.

Hello. This is the first time I've read this thread, and it's truly inspirational!

EarthCalling, you are a warrior woman - good on you!

Here is the story of my Daniel (AKA UbbyUbbyUbby).

Daniel was a big bouncey baby at 8 pounds 13. However, his growth was slow and by 6 months old he had not gained much weight.

He was a very allergic baby with severe eczma. He was gluten and lactose intolerant and would start wheezing if he was inadvertently fed food containing them.

His skin was super sensitive and his eczma would be aggravated ++ with washing detergants, sitting on grass etc. I had to wash all his clothes in soap flakes and couldn't use shampoo or soap on him.

I found a photo of him at 6 months old recently and he looks dreadful! Underweight, eczma and big dark shadows under his eyes.

However, he seemed to grow out of all his allergies by 18 months and seemed to develop normally. He was a big slow with his gross motor milestones - walked at 18 months, couldn't jump until about 2.5 etc

He was at daycare from 15 months 2/week while I worked part-time. No problems until I moved him to a community kindy at aged 3.5.

The kindy teacher was a real b*tch. With the wisdom of hindsight, I wish I had pulled him out of that kindy. This kindy teacher would scathingly tell me about his emotional immaturity and how he didn't play with the other children.

Preschool was better. He had a lovely preschool teacher. He played by himself all the time, but we just figured he was 'a bit of a loner' like his Dad.

Grade 1 was another story. He completely regressed after 2 weeks - baby talk, forgetting how to dress himself, crying/screaming all the time. We knew he was smart but his school work was not reflecting this.

It took 9 months of school before he could dress himself for school. He was having up to 6 meltdowns per day at school.

We were so lucky with the grade 1 teacher we had. She has an aspie son herself. 3 months into the school year she told me she thought he has asperger's. I didn't know what it was. It took another 9 months of repeated assessments to get a diagnosis.

I've sacked the first paediatrician - she just wanted to stick Daniel straight onto Zoloft. She didn't talk about social skills classes etc.

We've gone to Tony Attwood's clinic and have been given great help by his staff. I must admit when I see Tony Attwood walking through the clinic my heart rates goes up and it's like seeing a rock star! I've managed to restrain myself and not ask for an autograph!

I must admit I've cried quite a bit - not because I want Daniel to be N.T. - I've cried at all his anxiety and distress - don't want to see him go through that.

WP has been a lifesaver for me and the kids. I haven't cried since I've discovered WP!

I feel like we're in a good place now. We have a great Special Ed teacher, a great psychologist and I've got a lot of books/resources now.

I feel confident now to hassle the teachers.

Thanks
Smelena

Good for you and Daniel!

I am in the process of getting my sons school, who does not understand AS at all, and wants to rigidly hold onto the cirriculum for dear life, to understand and appropreately accomidate him.

It is not an easy task. All they seem to be capable of doing is moving the instruction and assignments "down a grade level" (which I have stopped except where absolutely nessisary). What the did not "get" was that unless they change the way they teach him, he will continue to struggle. It does not matter what "level" the work it! grr.

So far, they have a 3 inch binder FULL of my papers and letters. I don't communicate well verbally, I cannot "explain somthing" in the give and take of conversation. I need to write it down! (As a child though, I could not write, and talking to me from a young age, I always have seemed more mature then I am, or more educated then I am). So people don't UNDERSTAND that I can't verbally communicate very well especially with upsetting matters. (What do you mean, you talk very well. YOu are very "articulate".! BAH!)

It is kind of funny actually, I can't communicate my ideas verbally, because I just can't convert them into words in real time. Yet I struggle to write them down, because of poor spelling and phonetic awareness! *sigh* Life as a learning disabled aspie. Not easy!

If you want, I can PM a few of my more forceful letters to the school recently.

Wow! what you miss when you're gone for a couple of weeks. Well let me get to work on my typically keen and astute replies. Be back in a few.

Having come from a strong religious background I can understand how all encompassing such an event can be in a person's life. As what I hope is an encouraging aside I want to assure you that not attending a church regularly does not have to mean that you lose your faith. Continue to practice the teachings of your God and to deal with others as you believe He would want you to do. We stopped going to our place of worship when Z was requested not to return until he could be a better testimony for the Lord. I honestly believe that is what all of the parents here are struggling so hard to attain for their children, understannding and fair and proper treatment by their fellow humans. After all Christ summed it up by saying A new commandment I give unto you, that you love one another as you love yourselves. Sounds like you are doing fine on those lines, keep it up.



Do not be surprised by educators who are not familiar with Aspergers, They are far more numerous than you may think. We live in The Richmond, Va area and have been fighting with the school system here for 5 years to get the appropriate help for Z. As we procede through Middle and High schools I know there will be more obstacles to overcome. My hope is that as we win victories for our children others who will follow may find their journey a little easier. Am I too much of a dreamer?



Once again I echo your thoughts. This is a great group of friends and I feel very fortunate to have found them. Thank you for sharing with us, I look forward to hearing more from you.

P. S. I tried to get thi "quote thing right three times. Y"all just have to take it the way it is.