Parenting an Asperger's child

By Trials and Tribulations Tuesday, September 30, 2008

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A year and a half later, I am home schooling him. The teacher, this paragon of sympathy and understanding of an 8 year old with issues, retired at the end of year. We tried to put him back in at the beginning of this year, but he was not quite ready. The principal and the guidance counselor, along with the Office for Exceptional Children at the county school board, are working with me to get him back in school in January.

I know I made many mistakes. What would I do different? I would have insisted more on a referral to a child psychiatrist sooner. In defense, I think that I kept hoping that the peds were right, and that he just needed to mature. Also, I would have followed up more closely when his teacher kept telling me that she was having no problems at all out of him. Again, I guess I was so happy to finally have a trouble free school year that I wanted to believe that he had finally got it under control. I have found a wonderful book that has been a tremendous help in teaching him coping skills. It is called "Parenting Your Asperger Child," by Alan Sohn, Ed. D., and Cathy Grayson, M.A. Feel free to email me if you have any tips, or if you think I might be able to help you. My email is treysma2001@yahoo.com. Put Asperger's in the subject line so I won't spam it!

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Eileen Bailey, Health Guide

9/30/08 6:48pm

Thank you so much for sharing your story with us. What a wonderful parent you are, don't ever let anyone tell you differently. You have stuck with it and have been there for your son. You are working to help him succeed and have worked with teachers and doctors to find out what was different and what you could do to help. And you are willing to learn and find out more, all to provide your son with the best possible chance of succeeding in this world. You have persistance and your love for your son is apparent from your story.

Keep up the good work, thanks for sharing and if you have a chance, read some of the other stories and posts from other readers and share what you have learned. I am sure others could benefit from your experiences.

Eileen

Trials and Tribulations

10/ 1/08 9:59pm

Thank you so much! I wiped the tears away as I typed this reply--so many people fail to understand how hard it is, and even more fail to realize you far a kind word and a simple pat on the back goes. I deal daily (mostly from my hard-nosed "spare the rod and spoil the child" father) with criticism, mostly that my child is just spoiled and needs discipline--the same attitude that his third grade teacher used to drive him to a psych ward! Again, thank you, and God bless.

Stephania

Eileen Bailey, Health Guide

10/10/08 2:22pm

Stephania

You will find you are understood here. Those of us on the site that are parents have, most likely, parented a special needs child. We understand and have been where you are. We have felt the misunderstandings of other people, those, as you said, that believe your child simply needs discipline, even though you know there is more to it than that.

Always remember, as a mother, you know what your child needs. If you are not there to advocate for him, then no one will.

Although it is hard some days just to make it through, don't give up.

Keep us posted, share your stories (good and bad) we can work through the ups and downs.

Eileen

Lara McFarland

2/ 9/09 9:34pm

I agree with the two of you whole heartedly. I currently have a 5 year old son who for the last year (since he was 4) has been diagnosed as having adhd. It was not until today that I thought it could be something else. We too have tried diffferent medications. Adderal CR first 10 mg and he had severe appetite loss and sleeplessness. Most recently Biphenton up to 20 mg. He has been aggressive at school and makes noises all the time when told not to and distracts his class. My son Connor is our only son. It really has been hard for the past 3-4 years always hearing about his disruptiveness, distructive and aggressive ways. It is also hard not to think that you are a crappy parent. Fortunetly I have a terrific husband who constantly tells me atleast we are in this together and that is true. Many tears have been shed and I am truly hoping for some more progressive help now. My son has not been diagnosed with Aspegers yet but I do believe that this is more the answer than the adhd. Thanks again for your great article as it has helped me to check out other possibilities.

Trials and Tribulations

2/12/09 4:22am

I have had a few frustrating weeks, and I really feel like getting my soapbox out and venting a little about the well-meaning and not-so well meaning people who feel the need to offer advice on how to handle my very special child.

Stop telling me that I just need to "bust his butt" when he becomes upset and stomps and kicks, and I will refrain from telling you that you just need to get your deaf child some hearing aids and he will be "normal."

Stop asking me what I did wrong when I was pregnant, or what happened to him when he was a baby that made him that way, and I will refrain from telling you that your child has diabetes because you gave him too much candy and soda pop when he was small.

Stop telling me that I baby my son too much because I constantly reassure him that he is loved, and I will refrain from telling you that your child doesn't respect you because you put your own needs and the needs of your boyfriend/husband/SELF over the needs of your child.

There are so many adages that apply to these unsolicited advisements. When you have walked a mile in my shoes . . . . If you live in a glass house . . . . . . But my favorite has to be this: Opinions are like buttholes--everyone has one. And no one wants to hear either one of them!

I really want to thank the people who have responded to my story. To hear from so many people who have walked a mile in my shoes, and whose opinions are valued because of that mileage, has been both encouraging and empathetic. Thank you to each of you who have responded, and thank you to each of you who have read my story and sent up a little prayer for me and mine. I would like to encourage anyone who wishes to drop me an email and share your story. Or, if you have any ideas that might help, I do welcome advice from those who truly understand my situation. To those of you who are going through similar problems, my prayers are with you!

Stephania

Trials and Tribulations

2/16/09 12:39am

I really wanted to apologize for that last posting! I returned to the site and re-read it, and realized that I may have come across with the wrong message.

Over the last few weeks, I have had six different people offer me their own advice about what I am doing wrong with Ryan, and how they could do such a better job. I just need to take their advice, and all of Ryan's problems will go away! I like to think that these people are well intentioned, and lack the knowledge to offer the advice that they are so convinced I need to hear! I think the final straw for me came when I was in the local grocery store and I overheard a woman comment to her husband that it was a shame that people didn't discipline their children. This comment was in response to Ryan crying for a snack cake that lists red dye in the ingredients, and we are trying to eliminate the red dye from his diet (it does seem to be making a difference in his irritability). I patiently explained to Ryan the reason that he couldn't have the cake, and offered an alternative that didn't have the dye. The woman in the store had stood behind me and listened to the whole explanation, witnessing him calming down once matters were explained to him. Asperger's children (at least mine, anyway) seem to respond more positively if they have things explained to them. They can't understand many things that are obvious to the rest of us, and this lack of understanding leads to a lot of frustration. Said frustration then leads to tantrums, irritability, and the dreaded "fits." I have found that Ryan calms down and handles changes in routine and being denied things he wants much better if I explain the whys and hows of things. The lady in the store made sure that both Ryan and I heard her when she told her husband that all she had to do with her kids was tell them "No."

We Asperger's parents may seem to have it rougher to the parents of "normal" kids. But let me tell you something--I wouldn't take 100 "normal" kids for my funny, loving, brilliant, and oh so special little Asperger's boy! My grandmother--who raised a mentally retarded (as it was known back then) son with incredible devotion in an age when many such children were institutionalized because different was bad--always told me that God chose parents that He knew could handle special kids. He gave these parents His most special angels, disguised as Down's syndrome children, children in wheelchairs, and, yes, autistic and Aspereger's kids. These kids are God's special children, and we parents have been given a special gift from God in each of our special kids.

God Bless! I really loved hearing from all the parents who were dealing with their own special angel. E-mail me at treysma2001@yahoo.com, and put "asperger's" in the subject line so I won't spam the e-mail. Take care!

Stephania

trials and tribulations

6/10/09 11:19pm

Hi All!

First, I want to thank everyone who took the time to email me. I really enjoy hearing from other families that can relate to the drama that is my everyday life!

Ryan returned to regular school in January, with a full time aide. It was pretty bumpy at first, but once he got into the groove of things (in other words, once he realized he had to follow the rules and do his work!!), he did pretty well. But things kept getting worse and worse at home. His fits got so bad that his therapist and I decided that he

needed to be hospitalized for some intense therapy. He spent two and a half weeks at

Rivendell, a really nice facility in Bowling Green, and I have to say I am really pleased

with the treatment he received. They weaned him off the Risperdal and the Attarax,

lowered the Depakote from 1000 mg a day to 750, and increased his Adderall XR from 30 mg to 40 mg a day. His meds hadn't been changed in over a year--since he got out of the last hospital, actually--and I have to say I see a great improvement in his

behavior. I am not sure how much of it is the meds actually working the way they are

supposed to, and how much of it is control on his part. I hope that he has actually learned how to cope with things, and is using the things they taught him in therapy to

deal with everyday life.

Trey is, well, Trey is 13. Need I say more? Actually, Trey is wonderful. He has really been great helping me as I deal with Ryan's problems. I have made a conscious effort

to make sure that Trey doesn't get pushed aside with all the attention Ryan demands.

I believe that Trey will do just fine!!

Please email me if you would like to talk about your ADHD or Asperger's Angel. I love

hearing from you! And thanks for listening to me!

Stephania

Kristin

9/ 1/10 2:26pm

Hi there, I have a 6 year old, Connor who has just been diagnosed with ADHD. His doctor has put him on Biphenton. It has been a really long road getting here though. I have always said that he wasn't like all the rest of kids when it came to behaviour, agressiveness, social behaviour and not being able to ever stop! In kindergarten last year, he was considered a class bully, not making any friends. He eventually got a EA in the classroom with him, which I think helped a bit. He had a fantastic kindergarten teacher, that was always open to trying new things with him and working with us. When his report card came home at the end of the year it said that he didn't even meet kindergarten standards..and that as a parent was heart breaking! We have been on the wait list to get into the child mental health unit here in Victoria, Bc for the last 6 months and when I called this last week they said we are looking at at least another 2 months (how frustrating, when all you want is help for you child!) It has been a long road with lots of tears along the way. We also have a 8 year old, Braydon who is a very bright intelligent boy. He is getting better with trying to help his little brother, but it is hard for him at times beacuse it is constant, we try to talk to him about what is going on with his little brother and think that has helped him understand it a bit better. It is so nice as a parent to know that these talk groups are open to parents with kids with a diagnosis. Thank you to everyone for sharing their stories and comments that I read, they have given me hope that the meds will hopefully work for Connor as he is starting grade 1 next week, let's hope he has a better year and makes some friends, and can sit back and relax a bit...lol!

Parenting an Asperger's child

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