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Topic : Raising a Special Needs Child

Number of Replies: 715
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Created on : Friday, July 01, 2005, 12:48:15 pm
Author : dataimport
Do you have a child with special needs? Share your advice and support with others raising a challenged child.

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October 13, 2005, 4:51 pm CDT

Thank you

Quote From: sdauback

I hate that your children have, or may have, Asperger's Syndrome, but it is nice to know that other parents out there understand they day-to-day struggle raising a child with a disorder. I am a single/divorced mom and have raised my daughter by myself (with the exception of a very brief interim marriage) for 10 years. 

  

After all the hassle I have had with this school for 5 years over my daughter, I have returned to school to pursue a degree as a School Psychology Specialist with an emphasis in autism/asperger's. If you can't beat them, join them. I can't change them from out here, so I will get on the inside and work from the inside out to bring awareness to at least one school district about this disorder. 

  

Because our children look so normal, many people just assume they are "bad" kids or have behavioral problems when they don't. I just wish someone, somewhere in this country would raise public awareness of this disorder so our children do not suffer so much.  

  

My daughter had such a difficult time last year, even with her teacher, that I pulled her from school the last two weeks and wrote a six page letter to the school principal and assistant principal letting them know that they had egregiously violated my daughter's civil rights (I also named specific teachers' names in the letter who had mistreated my child) and I was calling my state's attorney general, the state Department of Ed. and DHS. I was amazed at how quickly they were calling me, wanting me to come to the school to talk things over and get an IEP in place for my daughter that should have been there in 2003, even with the incorrect diagnosis. There is, of course, background info I haven't listed here. The point is, I let them know in no uncertain terms exactly what they had done and that I was not putting up with it. They had allowed my daughter to be bullied all year, even by the teacher, and then when she got fed up and struck back, they saw her because she wasn't as crafty as her tormentors, who kept their behavior under the radar. As a result, I was called to the school because the assistant principal threatened to expel her. When I found out what had really been happening, that is when I pulled her from school, wrote the letter and called the agencies. 

  

DO NOT LET THEM RUN OVER YOU. Schools will threaten and try their best to intimidate you into doing what they want, and they usually get away with it. Human nature is human nature: Intimidation works for them, so they keep doing it. Find out what your child's rights are (look at IDEA and FAPE and whatever state provisions you may have) and put it in writing to the school that you are not going to be quiet and they are not going to get away with unconscionable violations of your child's rights.  

  

Be careful in choosing your battles, though. If it isn't really worth fussing about, don't. When you become the mother who is at the school every day complaining about something, they will not take you as seriously. It is like the "nagging wife" syndrome and gets you nowhere fast and certainly doesn't help your child. 

  

BTW, check out the OASIS website, if you haven't already. It is a great online support for AS parents specifically and you can pick up some great information from the parents. 

  

Wish all of you the best! 

SD 

Wow I went through similiar situation and somone else said because these kids look like they dont have anything wrong with them they are treated as bad kids.  My husband gave up a good job so we could move where I could be closer to my family and the schools where horrid.  I called to every school district in this area and drilled them with questions on what or how they would handle a child with autism.  And I picked the one that had the best ansewers I am so so so thankful for them everyday.  They are wonderful my kids went from bad to better and now after two years awesome.  They have reached out to me and my children in ways that thank you is not enough.  I would award them the world if I could.  That is awesome advice though  DO NOT LET THEM RUN YOU OVER but do not be a nag.  I wish you the best too Missy
 
October 13, 2005, 6:47 pm CDT

IEP scheduled.

Quote From: boynemamma

I am so sorry for your situation. It is really had raising these kids and to raise them as a step child relationship well I bow to you.  Frist of all I would ask for a new evaluation at his school.  I don't know what kind of costudy you have but I am pretty sure either perant can ask for a new evaluation because it is obvious that what they are doing with him at school is not working.  The school legally has to give him a new evaluation.  Then you can tell them that you are not stopping until they include the OC in his curriculum.  And if the mother moves away I would frist get some legal help there.  There may be a way to keep him in your area.  Please PLease read the perants rights you can get one at any school office.  Also you can usually request a perant advocate.  The school usually doesnt like to make it known they are available but they are.  Have them help navigate your system.   

       I would also look up what is known as play thereapy I have been to seminars where they taught it because it is so expensive to actually have a play therapist.  I had Dr. Richard Solomon He was wonderful he use to have a website I dont know if he does any more.  This has helped my kids more then anything.   

       If I had to hear Oh they will grow out of it one more time I swear I was the one who was going to through the tantrem.  Find a good doctor dont stop till you find one that will help.  Write any time I would be happy to help it gives me encouragement if I can help some one going through this.  I pray for the day when they can give us ansewers to why all these beautiful children have to go through this but I will tell you this the faster you get the right help the better things will get.  It will be night and day difference.  I challenge you to really find out what makes him tick what his limits are and where he can be pushed to do better and where he needs time.  Thank you I will be thinking about you Missy 

  We just got a letter for a IEP.The problem is that they sent it to his ex and her husband.His fathers name isn't even listed.That infuriates me,because he took his divorce documents to the school last year to make sure he was notified of everything concerning his son.This is part of the problem.We do have help from a lawyer now trying to keep her from moving.Now the lawyer will be notifeid that the school isn't following court order that both parents be notified about his education. 

  It is hard enough to get him what he needs,but the school is making it that much harder. 

   Thanks to all of you for your advice and thoughts!!! 

 
October 13, 2005, 11:45 pm CDT

HI ASPIE MOM!

Hi, I've started a diary for Asperger's parents. It's under shared diaries. I'll be writing alot about my own experiences. Swing by if you like.

I am not so sure that homeschooling is the best alternative for either you or your son. Asperger's children need guided social interaction. The best possible resource would be a Therapeutic Day School, however, unless your school district is going to pay for this the tuitions are virtually impossible.

Your son wants very much to be 'normal.' He wants all the things that other kids have: friends, room to move, room to explore on his own. His interests and emotions are intense. He's bright, but his articulation appropriateness isn't on the mark. On top of this, he's impulsive. He can't see the other side because empathy (though he feels deep and genuine emotion) isn't easily the first thing accessed. All of this makes it hard, because his behavior makes it difficult in the presence of a typical classroom. And so you homeschool.

But you can't be the sun, the moon & the stars for your kid. And maybe you're frustrated too, and so the two of you become a toxic combination.

I'd urge to you seek the company of other parents who are going through a similar struggle. You have to know that you're not the only one going through this. They might have ideas of how to work with your public schools, how to get an accurate diagosis, finding a good social skills program, a good psychiatrist and a good psychologist just for you. (Yes, parents need to go through counseling too, because IT'S TOUGH).

An excellent resource for you is http://tonyattwood.com.au. This is Dr. Tony Attwood's site, and he's one of the top researchers in the world on Asperger's.

Yours, Calliegal

 
October 14, 2005, 6:23 am CDT

Need some Advice

Hi everyone my name is Jamie Stevens. My family and I have been going threw alot. I have four kids three girls one boy. My oldest daughter has been going threw a really hard time, her biological father came into her life after 6 1/2 years of not even being around, DHS came into my family's life last year my children ended up in foster care, for some mistakes that me and my husbamd made, but we are making them better now. My oldest daughter was sexually molested by my sister's husband, we took her straight to the center that deals with only children who have threw this kind of tragic situation. She shut down anf would not take about it. We have her in counsling and on medcine cause she is having a hard time dealing with everything in her life, she became very angery and always upset and very aggressive towards everyone. Then on top of everything my mother died and she was really closed to her. My chirlden have been threw so much, I have been very depressed and I am trying to control me. I dont know how to handle my daughter Nicole, she just seem's so lost and distant. Plus on top of everything eles, her biological father let her jump off a deep in diving boared and watch her sink to the bottom of the pool, he did not jump in a save her. she almost died. She is so afaired of him she dont want nothing to do with him. I dont want to lose my daughter to anything, and dont know how I should handle the situation and hand. She is crying out for help I dont know where to start. So if anyone have any questions please helpp me figure out where or how to help her. Thank you.
 
October 14, 2005, 9:05 am CDT

a big hug

Quote From: piglet05

Hi everyone my name is Jamie Stevens. My family and I have been going threw alot. I have four kids three girls one boy. My oldest daughter has been going threw a really hard time, her biological father came into her life after 6 1/2 years of not even being around, DHS came into my family's life last year my children ended up in foster care, for some mistakes that me and my husbamd made, but we are making them better now. My oldest daughter was sexually molested by my sister's husband, we took her straight to the center that deals with only children who have threw this kind of tragic situation. She shut down anf would not take about it. We have her in counsling and on medcine cause she is having a hard time dealing with everything in her life, she became very angery and always upset and very aggressive towards everyone. Then on top of everything my mother died and she was really closed to her. My chirlden have been threw so much, I have been very depressed and I am trying to control me. I dont know how to handle my daughter Nicole, she just seem's so lost and distant. Plus on top of everything eles, her biological father let her jump off a deep in diving boared and watch her sink to the bottom of the pool, he did not jump in a save her. she almost died. She is so afaired of him she dont want nothing to do with him. I dont want to lose my daughter to anything, and dont know how I should handle the situation and hand. She is crying out for help I dont know where to start. So if anyone have any questions please helpp me figure out where or how to help her. Thank you.
I'm really sorry about the sexual molestation. What an enormous betrayal for all of you. Your lives have been shattered, your trust is gone. But worst of all is that you are left with having to shape this very distraught girl while you yourself are confused. It's an enormous responsibility, and I do understand your distress.


I'm glad you have her in counseling and that she's seeing a psychiatrist. You absolutely did the right thing.


Now breathe.


I'd urge you to get counseling for yourself. It's normal to be depressed under extreme circumstances, and it does you no good to have only your daughter in counseling while you wait in the lobby, afraid, scared, trying to be socially acceptable when you feel like screaming!


Keep making your circle bigger. Lots of people can help and will help if only you let them.

 
October 14, 2005, 1:23 pm CDT

Another big hug

Quote From: piglet05

Hi everyone my name is Jamie Stevens. My family and I have been going threw alot. I have four kids three girls one boy. My oldest daughter has been going threw a really hard time, her biological father came into her life after 6 1/2 years of not even being around, DHS came into my family's life last year my children ended up in foster care, for some mistakes that me and my husbamd made, but we are making them better now. My oldest daughter was sexually molested by my sister's husband, we took her straight to the center that deals with only children who have threw this kind of tragic situation. She shut down anf would not take about it. We have her in counsling and on medcine cause she is having a hard time dealing with everything in her life, she became very angery and always upset and very aggressive towards everyone. Then on top of everything my mother died and she was really closed to her. My chirlden have been threw so much, I have been very depressed and I am trying to control me. I dont know how to handle my daughter Nicole, she just seem's so lost and distant. Plus on top of everything eles, her biological father let her jump off a deep in diving boared and watch her sink to the bottom of the pool, he did not jump in a save her. she almost died. She is so afaired of him she dont want nothing to do with him. I dont want to lose my daughter to anything, and dont know how I should handle the situation and hand. She is crying out for help I dont know where to start. So if anyone have any questions please helpp me figure out where or how to help her. Thank you.

I can,t imagine what you are going through.  But  I was sexually abused as a child by a very close family member and again what has helped me the most surrounding myself with healthy people. Even when I did not want want too.  When I was a young teenager it was me against the world every one was out for something of their own( or so I thought) and I trusted no one.  I went to counseling but I was not honest so that did not work so I ran of and got married two weeks after I turned 18.  That did not work either.  I would really suggest that you make sure that even though the truth hurts and that she may believe no one cares about her even though they say they do that you remind her every day every minute no matter what no matter where you will always love her that she is a worthy person.  To open up and talk about the shame the pit of emptiness she feels about loosing a person so close to her.  Keep her in counseling no matter how long it takes she needs to know you will never let go and that there is a future and a good future for her.  Iwould say that maybe you should go to counceling too. A behavior therapist can be a great asset at these times to teach you how to deal with her. God be with you and your family. Missy. 

 
October 14, 2005, 2:55 pm CDT

Shared Diary for Asperger's Parents

Hi Everyone, Just wanted to tell you that I've started a shared diary that parents of, and spouses of those who have Asperger's might find enlightening.


I think if you click on my name: calliegal, you'll be directed there. It's called "My Imperfect son: Asperger's.


All the best, Callie

 
October 14, 2005, 3:12 pm CDT

I don't agree

Quote From: calliegal

Hi, I've started a diary for Asperger's parents. It's under shared diaries. I'll be writing alot about my own experiences. Swing by if you like.

I am not so sure that homeschooling is the best alternative for either you or your son. Asperger's children need guided social interaction. The best possible resource would be a Therapeutic Day School, however, unless your school district is going to pay for this the tuitions are virtually impossible.

Your son wants very much to be 'normal.' He wants all the things that other kids have: friends, room to move, room to explore on his own. His interests and emotions are intense. He's bright, but his articulation appropriateness isn't on the mark. On top of this, he's impulsive. He can't see the other side because empathy (though he feels deep and genuine emotion) isn't easily the first thing accessed. All of this makes it hard, because his behavior makes it difficult in the presence of a typical classroom. And so you homeschool.

But you can't be the sun, the moon & the stars for your kid. And maybe you're frustrated too, and so the two of you become a toxic combination.

I'd urge to you seek the company of other parents who are going through a similar struggle. You have to know that you're not the only one going through this. They might have ideas of how to work with your public schools, how to get an accurate diagosis, finding a good social skills program, a good psychiatrist and a good psychologist just for you. (Yes, parents need to go through counseling too, because IT'S TOUGH).

An excellent resource for you is http://tonyattwood.com.au. This is Dr. Tony Attwood's site, and he's one of the top researchers in the world on Asperger's.

Yours, Calliegal

I think you need to work on your approach a little.  I am not new to this.  I am very educated about it.  (I am educated, period!)  I also know what is best for my child and home schooling is working great for us.  You can't say, across board, that Asperger children should not be homeschooled.  Each person needs to evaluate their situation, what is available and decide what is best for their child and family.  You are not very educated about homeschooling, by the way.  My child is not socially deficit.  Some people seem to think that formal schools are the only way for a social life.  If bullying my child, teaching him obsene things, forcing him to learn in ways that he does not learn so he is beside himself with frustration, we can do w/o that kind of socialization.  We belong to a homeschool group and he is with those kids when we meet as a group, he also has play dates we set up.  Maybe at the time I posted things were different - I know it was a while ago. 

 

 

There is a large group of people who homeschool their Aspie children.  I belong to a Yahoo Group that is full of them.    It is only for people who homeschool their Aspie kids and there are hundreds of members.  And they all seem happy with how it's working for them.  We can teach our children in a way that they are wired.  My son's doctors think it's great that I am homeschooling him, by the way, and they are specialists in Autistic Spectrum children. 

 

 

My son has seen a counselor once a week for the last few years.  She helps him act out different situations and ways that things can be addressed, plus he can talk to her about his feelings.  And I HAVE been seeing the counselor on my own about once a month for quite a while. 

 

 

My son is also taking glyco-nutritional products and I've seen a huge difference since taking these.  He used to be on anti-depression/anxiety medicine and was on Strattera.  He is now free of all pharmaceutical medicine, with his drs. blessing.  He is no longer hyper, rarely impulsive, he is no longer depressed, doesn't get frustrated very easily anymore.  He is no longer obsessive compulsive, he can handle changes, he can follow more than one direction at a time now - he's doing great. 

 

I think you meant to be helpful to me after reading an old post.  However, you came across as having all of the answers and I took offense to that.  I especially have a hard time with anyone telling me that I shouldn't be homeschooling my son.  We've homeschooled for 4 years now and it's the best answer for us. 

 
October 14, 2005, 3:22 pm CDT

Thank you!

Quote From: sdauback

I am sorry you are having so many problems getting your son correctly diagnosed and I completely understand your pain and frustration. The longer your son goes undiagnosed, the more time you lose in getting the intervention he needs, if he is indeed Asperger's. 

  

It is generally not uncommon for an Aspie to have a comorbid, but to have several is highly unlikely. My daughter has AS with comorbid ADHD. HOWEVER, many symptoms of other disorders may present in Asperger's and be misdiagnosed by someone who is unfamiliar with AS. I would suggest your ask your ex to take your son to a neuropsychologist or neuropsychiatrist and ASK whoever it is if they have qualitative experience with autism spectrum disorders. 

  

My daughter has had symptoms since the age of two, followed by a very frustrating 8 years of doctor after doctor after psychologist, all of whom said nothing was wrong with her. Then, 2003 brought several misdiagnoses. It was only in September of this year that she was accurately diagnosed and I am still trying to get interventions in place while doing what I can at home to help her. 

  

If you have any questions about where you might take your son, go to the OASIS website and make a post. One of the girls can get you information on specialists in the state in which your son resides. 

  

I have to go pick my daughter up from school. I will check the board later to see if you have questions. 

You are wonderful!!!  :)  Thank you so much!  I found out that he HAS been diagnosed with Aspergers, along with all the other stuff.   

  

I will definately check out the OASIS site and see what I can get from there.   

  

I'm sure I will have more questions and when I do I will be sure to post them! 

  

Kara 

 
October 14, 2005, 3:30 pm CDT

P.S. on homeschooling our special needs children

Not only are there homeschool groups to help our children not be isolated, but there are homeschool co-ops in many areas.  These are groups that meet for certain classes each week, i.e. Mondays, art, music, PE classes, lunch 

  

My son also plays soccer and basketball through a homeschool group. 

  

Asperger children usually have a special interest that they are near obsessive about.  We can use that interest and go as far as our child wants and expand on it. 

  

Deb 

 
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