Wednesday, May 30, 2012

Parenting an Asperger's child

By Trials and Tribulations Tuesday, September 30, 2008

I have two sons, aged 13 and 9.  My eldest was diagnosed with ADHD at the age of five, began taking Concerta, and responded wonderfully.  Then at the age of 10, he was diagnosed with bipolar disorder.  Again, he responded wonderfully to the medication (Lamictal and Rimeron).  My youngest is a totally different story.  At the age of three, drs said ADHD--then we began playing musical medicine.  In Head Start, he had trouble initiating play with other kids, was aggressive when he felt "backed into a corner," and was subsequently diagnosed with Oppositional Defiant Disorder.  Add to the ADHD meds--Strattera at the time--Risperdal.  Confused, heartbroken, and desperate, I read everything I could get my hands on about children with behavioral problems.  My pleas for further testing and diagnoses from both peds and psychs were brushed aside, and I was repeatedly instructed to "be consistent," "use charts and stickers," "take away his games and television."  In other words, they had done their job by writing the prescriptions, so I must be failing somehow because he wasn't the poster child for successfully treated ADHD that my older child is.  FINALLY, his ped walked into the exam room and witnessed him kicking the wall and grunting because he wasn't home in time to watch Pokemon cartoons.  Her response?  This child is dangerous and out of control!  We need to institutionalize him right away!!  After 4 years of my pleas and arguing for more help, they want to lock him up--let's pour a five-gallon bucket of water on this tea light candle that this mother has been waving in our face for years.  Then we begin the gauntlet of psych wards for children.  The only place that has a bed wants me to bring him down there, drop him off, then not see him or talk to him for two weeks.  He was 7, and had NEVER been away from home for more than a day or two, and had never been away from family.  Okay, let me get this straight.  My child has problems--problems I have been faithfully reporting to you for several years.  Your response has consistently been to keep giving him drugs and figure out what I am doing wrong.  (BTW, I only have Medicaid for my kids, which meant the only way I can get any kind of treatment other than their regular pediatrician is with a referral from said ped.)  When you finally see what I am talking about (and he had of course lost interest in the tantrum within 15 minutes of the doc's insistence of hospitalization), you again refuse to listen to me and steamroll your opinion on me.  You want to rip this insecure child from his one constant--his mom and his brother--and throw him into a group hospital with God knows what other kinds of patients.  Finally, after I refused the bed at the group hospital, they gave me a referral to a child psychiatrist who specialized in tough cases.  I spent ten minutes describing my child's behavior, then the psych spent twenty asking--Does he do this?  Yes.  And this?  Yes . . .  What about this?  Yes!!!  Easy--your son has Asperger's Syndrome.  That day saw the beginning of some real progress.  The tantrums tapered off.  He began sharing games.  He actually had friends at school!!  He would even play the games that his brother wanted to play instead of insisting (rather noisily and destructively) to play HIS games.  Then we started third grade.  On the first day, same as every year before, I went to meet with his teacher and fill her in on how to deal with his idiosyncracies.  She had never even heard of Asperger's, so I brought her several articles that I had found online.  I also let her know techniques that we had found to be successful in handling his anxieties.  Based on her actions later, this teacher apparently decided that this was just a bad kid whose mother was making excuses for him and she proceeded to do more damage than you can even imagine.  Rather than offer him extra work or allow him to read his library book when he finished his work before the other students (a daily occurrence), she let him bring his pokemon cards out in the classroom and play with them.  None of the other students were allowed to, but she "made an exception" for him.  He was told that if he felt like he was going to lose his temper, go out in the hall and look out the window!!  By the first week of November, he was out of school and hospitalized.  My weekly calls were met with glowing reports of his excellent behavior, then I get a call from the principal reporting that several incidents had occurred over the last few weeks.  The final straw included chairs being thrown across the room.  At the hospital, he reported that his teacher "told the other kids not to pay attention to me because I am crazy in the head," that his teacher said he was a bad boy who needed some discipline, that his teacher "told me I needed to chill out or I would end up in jail before I get out of high school." 

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

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

Anonymous
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.

 

Laughing

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

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

Anonymous
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

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!

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By Trials and Tribulations— Last Modified: 10/26/11, First Published: 09/30/08