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Old 10-04-2005, 05:57 PM   #1
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Just Don't Know

Hello everyone. It's me again complaining again. Sorry! But I don't have Kemp in a autistic class at school cause he is so high functioning that I felt Spec.Ed would do just fine and sure enough it is doing just fine. Let me explain... when Kemp was born I felt right away something wasn't "right" w/him and I haven't had that feeling w/the other babies so when he was dx in June of this year it was bitter sweet cause at least I had answers to ? I had had for two in a half years. So that being said the school asked me if they could do testing on him "their" own autistic testing I didn't care so I said yes. Well they just called today and said that they didn't find him autistic but that he scored very low. First of all what does that mean!!! And now I am left to feel like maybe he was missed dx??? He does do SO well at school that I guess I could see were they might think he isn't. But he doesn't act like how he acts at school at home! I just wish in a wierd way that I would have just said no to the testing! I was talking w/ one of the people who conducted the testing and I said we cause of Kemp have been kicked out of resturants hair salons grocery stores. This isn't typical behavior! She agreed and said that yes alot of what my husband and I told her does sound like autism. I guess what I want to know does or has anybody been through this? One of my cousins wasn't dx till he was 17 yrs old and that was just last yr! Maybe Kemp is like that? The dr. did say that Kemp is very mild, but does have alot of the sensory problems and agresion problem but he hand flaps and tenses his hand and only eats curtain foods bangs his head does like loud nioses, I just don't know!!! I feel like I bring the worse out in him! If he acts so good for other people why not me??? I should probably add the I do have him on Risperdal 0.5 once at night. He is three and weight is 29lbs. He is like a "new" boy on the meds. he still seems autistic to me and my hubby. Any feed back is apprecaited alot!! Sorry for rambling!

 
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Old 10-04-2005, 09:07 PM   #2
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Re: Just Don't Know

KempsMom,

I know exactly how you feel. My son just turned 4 years old and we have had the diagnosis since he was 2 1/2. We had him diagnosed from an accredited university with the some of the top in the field. Now every new professional, including the school he is in tells me there is no way he has autism. He has major sensory issues and is borderline obessive. We have tantrums when we go to the store, shopping malls, restarants, etc. I don't want to leave the house when I am with him. He is completly different when he is at school. I don't know if it is because there is routine there or what but it is so frustrating. I too don't have him in the autism classroom, just special ed. We get this diagnosis and try to cope with it and BAMM just as we are starting to accept this fact, someone says oh he isn't autistic. Then our sensors go up and start questioning it again. All I can say is go with your gut. Also the things you are doing are working and you would do them even if you didn't have the dianosis. The diagnosis doesn't matter. It is just there to make us feel like we have a handle on what is causing this nightmare.

 
Old 10-05-2005, 05:04 AM   #3
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Re: Just Don't Know

As a teacher, parent, and grandparent, the behavior thing, while frustrating, makes sense to me. On some level, our kids KNOW that we, their parents and grandparents, will love them regardless of how they behave. They don't know that about the others with whom they interact, so they are able to "keep it together" around them. Because of all of the effort it takes to do so, when they get home, we get what they were holding back all day. In a strange way, it is a compliment...they KNOW that we love them, and that we will accept them at their worst.

Again, seeing things from both the school and parent side, I strongly encourage you to advocate for your child, based on what YOU know to be true about your child. The educational system can be very overwhelmed with all sorts of issues, from budget woes to understaffing. I know it must feel like you are the ONLY ONE who is working in your child's best interest...I was there with my son, even though I was a part of the system that I was "fighting".

Hope that helps. Best of luck!

 
Old 10-05-2005, 06:31 AM   #4
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Re: Just Don't Know

I agree completely with Curious Nana. My daughter says this everyday "Drew is great for everyone but me". He will try different foods, behave well at school,no tantrums for anyone else but Mom. Go with your gut instinct,your Mom instinct it rarely fails us. Drew stays with me when Mom goes to the store or out to eat. Other people can take him just not Mom. Its always a disaster if she tries. She loves him so much and she has a wonderful relationship with this boy but she is still Mom and he knows he can act up all he needs to and she will still love him. He is not quite sure about anyone else. Well, maybe Gram. He has my number.
Good Luck

 
Old 10-05-2005, 10:52 AM   #5
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Re: Just Don't Know

Thanks for all the replies ladies!! As usaul I felt after reading the replies I was not alone!, Not making this up! Sometimes I feel like they think I'm making this up. But I'm not!!! I'm not the only one who feels that something isn't "right" w/Kemp my whole family feels and agrees w/me! Well thank you ladies so much! Any more advice or just stories are very much appreciated!

Kris

 
Old 10-07-2005, 05:54 AM   #6
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Re: Just Don't Know

Just wanted to keep everyone up to date on this thread. Yesterday Kemp's teacher told me that he isn't autistic (again) and that he is just manipulating me! I was so mad that I just left the school w/out saying anything back other then I don't think so. I went home and called my two sisters and family friend my grandma dad and so on and asked people if this was the case and a couple of them said yes he does manipulate but no more then the average kid though and didn't feel that that is Kemp's "problem". I was so upset that I went and picked him up early! My mom thinks I should find him another school that the teacher and I are on the same page and agree about Kemp! But I hate to pull Kemp from this school although it is true, are we going to go through the whole school yr not agreeing! I know Kemp is very funcationing atistic child and they see what I don't Kemp is diffirent at home! and they see him on his med now so..... Well thank you all for your time and thoughts.

Have a good day!
Kris

 
Old 10-07-2005, 08:22 AM   #7
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Re: Just Don't Know

Your Kemps Mom,how do you feel about him? What does your instincts tell you about him? Don't listen to just one teacher and let her upset you with her opinion of your son. Is she a Dr.? No! She might think she is helping, I'm sure she does. Go with what you know to be true. When you are a young mother and not quite sure of yourself with children with special needs, you can let just one person upset you. Don't do this to yourself. I use to be exactly like this. I am speaking from experience. Everyone tries to help but ultimately its you who will decide what is best for your son.
Stay strong Mom don't let them get to you.

 
Old 10-07-2005, 09:58 AM   #8
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Re: Just Don't Know

Dear KempsMom,

People say the same thing about my son all the time. He's an extremely high functioning 9-year-old. He posessed almost all of the worst symptoms of Autism.

Regarding the teacher, very politely(not condecending) ask her if she's ever had first hand experience with autism. If she says yes, then you say "then you know that when you move/change/alter an autistic child's schedule and/or surroundings, often they can become overwhelmed and climb deep inside of themselves, and can become very quiet and pliable." If she says she hasn't had experience, GIVE THE SAME ANSWER, with one exception...say "then I need to let you know that when an autistic child is overwhelmed..."

My son did the same thing at first. I'd get furious with the doc's cause they didn't want to take my word regarding his symptoms until....

He became so violent, I brought him to be diagnosed AGAIN immediately, during the tantrum, at age 2. He kicked me, punched me, pinched me, slapped me across the face, then wedged himself behind me, pushed his feet against my back AND PUSHED ME OUT OF MY CHAIR, right in front of the psychologist! I was so glad he "acted up" as the doctor saw that I wasn't misinterpreting him. If he hadn't done that, I probably wouldn't have gotten a diagnosis until it was too late, as he NEVER acted up at a counselors cause he would get DISORIENTED. He would become so overwhelmed by the CHANGE in environment, HE'D COMPLETELY CLAM UP. It was frustrating to say the very least.

That's why now, many therapists want to evaluate a potential autistic child IN THEIR HOME. Because often these kids don't act in their "normal" capactiy when removed from their familiar environment. Sometimes, when too disoriented, they rage like my son did. But how are we, as parents of autistic children, supposed to gauge that? When will they rage, and when won't they? By the way, ADD and ADHD kids do the same thing. Very hyperactive and ridiculous at home, but will be fine FOR OTHERS! SHEESH!

Also, many civilians I've talked to regarding autistic children, seem to be under the misconception that they are stupid or something. It's really the exact opposite. Most parents of autistic children can see a remarkable intelligence that they don't know how to tap into. The world will overwhelm the child and they can't process it all. What little they do process is answered with a highly over-emotional response. They are very intelligent and usually creative, ON THEIR LEVEL. Wheels spinning, balancing toys, grunting/groaning, keeps their world on a simple level that they can understand. Often, that's what they revert back to; quiet behavior when overwhelmed - simplicity and withdrawl.

There's lots of programs that can help. Early diagnosis and intervention is key, so go for it. Do what you think feels right for your unique child. Just because one person says something is bad, doesn't make it so. Just because one person tries one technique, and it doesn't work with your son FOR THEM, doesn't mean you'll have the same result if you try it. I've found, whoever an autistic child decides to bond to is usually the one they learn best from. So if he's emotional bonded to you, do whatever YOU have to to "wake him up." Try to always remain a calm pillar of strength when dealing with your son. There's still too much to Autism that is speculative. No one as yet, can give difinitive answers on much. So however you can provoke response, speech, or interraction with your son, DO IT. Whatever makes him "light-up" DO IT. Get on the floor with him and let him know you want to be part of HIS WORLD. It seems, the more we try to FORCE the autistic child(in studies) to behave, the more they seem to withdraw. If he's affectionate with you, that's a really good thing, as my son was almost NEVER affectionate with anyone. If you tried to hug him, he'd kick you.

Enjoy the hugs thoroughly, and enjoy your son, he sounds wonderful! DON'T let the "experts" get you down. If you don't like what they say to you, FIND ANOTHER EXPERT! If you feel your given ridiculously bad advice say "but there really are few difinitive answers on what the best treatment for Autism is." They may stutter a little, but any "expert" should know that statement is true and not disputable. There's still so much we DON'T KNOW. They're learning more and more, but it still isn't enough for a solid treatment.

If you feel you're being disrespected, don't tolerate it, BUT, always try to remain calm and positive, as any negativity will be absorbed by your autistic child. They're far more in tune to our emotions than most think they are. I've also found, as soon as any "official" person thinks you're being confrontational, you'll get no help from them. The schools/therapists/officials seem to have adopted a zero-tolerance for any angry parent. So if you seem aggressive to them at all, they'll turn their backs on you. Well, they did it to me. Every professional acted like they knew everything about autism, but had little good advice. I guess the "pro's" have to act like that, otherwise we wouldn't listen to them.

Enjoy your child today, with all his faults, quirks and issues. Please, when searching for answers, don't get so caught up in treatment, that you forget to love & understand him A LOT. It's easy to do in the autistic maze of flimsy answers. Do your homework, think of all the rejections you can get from the school re. your son's autism, and have comebacks for all of it. Educate yourself so the "system" can't bully you, but beware. When the "system" thinks you know more than them, it makes them feel inept. Officials don't like to be humiliated from lack-of-knowledge, so try not to sound too cavalier. Keep a stiff upper lip, don't give up, and try to keep smiling and laughing. I know it's tough, but the more positive you are, the better off your autistic child will be.

Good luck...C

Last edited by cg444; 10-07-2005 at 10:07 AM.

 
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