Why Does It All Seem To Go Downhill At Once?
Moms View Message Board: Parenting Children with Special Needs: Why Does It All Seem To Go Downhill At Once?
Both my grandsons have had bad weeks at school. The first grader had been doing quite well for several weeks. Then Monday and Tuesday of this week he brought home bad reports from school regarding such issues as talking back to his teacher and refusing to follow instructions. All of this came to a head today when he got into a shoving match with another boy and then was unable to calm down when the teacher broke them up. He had to be taken to the office yelling and trying to break loose from the teacher. His behavior became even more unmanageable in the assistant principal's office and he was suspended from school until Monday. I find it rather ironic that he had been doing so well recently and that his worsening behavior came the same week that his three year old brother had to miss a day of preschool because of his behavior. I am even more concerned with the three year old than with the seven year old. The three year old continues to be physically aggressive with other students and with teachers and continues to impulsively run off from his teachers on at least a couple of occasions each day. Both boys probably have something along the lines of Pervasive Developmental Disorder, Autism Spectrum, or Aspergers. The situation with the boys is really putting a great deal of stress on our family. We find ourselves becoming very irritable with each other. We feel as if we are doing everything we can to deal effectively with the situation, but nothing we try seems to have any lasting effect. We feel as if the school system is somehow blaming us for the fact that the boys are causing problems. At times we feel a lot of guilt wondering if there was something we could have or should have done to either prevent this from happening or at least lessen the severity. It is very depressing to realize that we are just at the "beginning" of this long journey.
Is the first grader in regular education? I am getting ds tested for aspergers but it takes a while. I don't think he has it because people tell me it would be obvious if he had it.... We will see... I called up my insurance company and they gave me a list of number to call so it would be covered. The local childrens hospital would have done it to. It is a developmental psychologist or just someone who does testing for aspergers. There is something I am trying.... It is sort of social analysis with ds. I analyse all social behavior I see for him. Why is that person doing that. Look at the body language ... what does it say. We do an emotion of the day too. (He probably knows his emotion better than any other kid his age now.) We were analysis jealous the other day. We read social situation books as much as possible... You can also go to the library and tell the librarian you want books on social situations. Bernstein bears arthur little bill joy berry books manners books too how to make friends books for example: to explain what is expected from them and why people react to they if they don't follow the rules of social behavior. You can also buy dvd and videos on manners and social situations. There is also something called odd that you might want to look into I see some kids with that... Oppositional ... something deviant disorder.... My friend is taking her 4 year old child to a social worker weekly for this. Don't feel guilty. They might not have anything like the autism... It is a spectrum but you either test for it or don't.....
I just learned after the odd comes conduct disorder... what ever that is... odd is like hitting and I have no idea what conduct disorder is....
Feona, the first grader is in a regular classroom setting. Their parents want both of the boys kept in a regular classroom setting if at all possible. The first grader went through an array of testing in our county more than three years ago. At that time we were told that he definitely has sensory integrative disorder and more than likely something on the autism spectrum. Aspergers was mentioned also, but they were uncertain because some of his characteristics just did not line up with Aspergers. The preschooler will be four in June, and he has not been tested extensively yet. His mother went to a school meeting about him earlier in the week, and the behavioral therapist feels that he is typical Aspergers. He does seem to fit the criteria much more closely than his brother. The school system is going to do more extensive testing, and in the meantime he will have a one-on-one person for the remainder of this school year. He goes half a day two days a week.
Oppositional Defiant Disorder is what you're looking for. No advice, but lots of hugs. Don't let the outsiders in the school hurt your family. You know you are doing all that can be done. Ame
My oldest son, now 43, has a mild form of Aspergers, and was diagnosed as pre-autistic at about age 3-1/2. He is, we all agree, the nicest person in our family. While he still is somewhat socially inept, he has learned over time how to get along with people and has lots of casual friends and some very good friends. He is extremely bright, and as a teen was often frustrated with people who couldn't keep up with him, but over the years has learned kindness. He was in special ed until 9th grade and then transferred to Central High School, then THE academic public high school for boys in Philadelphia. He went to Drexel University for 3-1/2 years, but dropped out. He has worked full time since he left Drexel, and now also has ongoing consulting work from a website he maintains which focuses on lighting. He has never been "in trouble", pays his bills, and saves money for retirement. Joan, I don't know why your grandsons' parents want the boys in a "regular" classroom setting if at all possible, but am guessing it has something to do with the stigma of being different. But if the regular classroom isn't meeting their educational and psychological needs, then other options need to be looked at, and I am hoping there are more options than just regular classroom vs. special classroom. I am wondering if one boy's behavior feeds into the other. I am also wondering if the parents are noticeably more worried about and involved with the younger boy because of his behavior problems, and the older boy sees this as a way of getting back some attention. Yes, you are at the beginning of a long journey. No, there is nothing you could have done differently, other than to not have these boys born. This kind of problem is inborn, I'm afraid. And I can tell you that I have one child who was diagnosed as pre-autistic, the second child had absolutely no problems other than driving me crazy as a teenager, and the third child had no learning disabilities but has serious problems with depression (which not only runs, but gallops in my family and in my ex's family). I can't imagine anything I could have done to change any of this, and I will bet that there is nothing anyone in your family can think of that you could have done differently other than early intervention, which you have done and are doing. Denial, of course, doesn't help, but that doesn't seem to be an issue. All of you should stop beating yourselves up about this. It doesn't help, it does hurt (as you note) and it may well get in the way of doing things and being what will be helpful to these young men and their parents.
He might not have aspergers.... That is why I am getting ds tested. People guess at this stuff too much. I would rather just know... yes or no. You can also get him tested and keep the results to yourself. It is actually against ny law for someone who isn't qualified to guess a person has aspergers. He has to be tested by a person who does these test all the time. No use guessing. Actually it makes me mad that people guess someone is aspergers.. Hello he either has it or not. This isn't a guess. I am looking forward to telling people... No he doesn't have aspergers... We had him tested. Go torture some other parent. I will say under my breath. You can have some characteristics or symptoms of aspergers or autism or ppd and not have aspergers or autism or ppd. They also used to guess he had ppd which he doesn't have because we had him tested for that.... Just makes me mad... .
The reason they don't want him in special ed is because sometimes the special ed classes the kids are low functioning. They might be still learning their abcs in first grade. Their child might already be reading and doing 2nd grade math. Also in regular ed you have better models. However sometimes the school does put kids in special ed for conduct disorders. Someone suggested the waldorf school for example for a child who is brite who need to try a different environment.
My friend had to switch her son to special ed due to conduct disorder and melt downs you are mentioning... Hugs... But I think they were constant melt downs. He is doing better now... Now she want him integrated for a few hours a day into a regular class and the distict isn't interested in integrating their speical ed students into regular class. Which is against the law. Least restrict environment is the law. What does he need to stay in the least restrictive environment? That is what they should give him... Full time aid... maybe... or something....
But I don't think that the school can force a child into special ed against the parents wishes.
My friend got a play group once a week for odd issues with her son at the school.
Also you can't usually tell if someone has aspergers at three years old... Someone said the average age was 7 years old...
Ginny, I am wondering what characteristics your son exhibited when he was the age of my two gs's, ages three and seven. From what I have read today and in the past about your son, he seems similar in some ways to our seven year old gs. The boy has an i.q. of at least 145 and academically is ahead of all the other children in his class. He already has tested out of fourth grade in reading. Earlier on there was a discussion about his skipping a grade, but even then he would have been further along than his classmates. His parents didn't want him to skip a grade because socially he is behind as it is. If he didn't have the behavioral and social problems he has, skipping a grade might have made more sense. His high i.q. and academic functioning is one of the reasons his parents don't want him in a special ed. class. There is no one close to him academically in the class setting in which he would be placed. Also his parents worry about his modeling some of the behaviors of the other kids as he wouldn't have the opportunity to be around children whose behaviors were more appropriate. Our special ed. classrooms sound very similar to Feona's description of what they are like in her school district. At this point the three year old doesn't appear as if he will be academically gifted. Hopefully we will get some better idea of his functioning after his testing is completed. He definitely has some issues that his brother has never had. He appears to be of average intelligence to me in some ways, but I have some real concerns regarding his ability to understand language and to express himself. Questions and instructions frequently must be re-worded for him.
Joan, email me at klipvm at rcn. com, so we can discuss this privately. I don't like to put too much about my son on the board as the internet is not (as we know to our sometimes frustration) a private place.
First lets get some terminology strait! A pervasive development disorder, simply means that a child is not developing at a normal rate in mostly social and sensory skills. It is am umbrella term, like he has a rash. Okay, so what type of PDD could he have (what type of rash, is it viral, it is chicken pox, it is a nonspecified rash?) The autistic spectrum falls under this umbrella, currently aspergers is on one end of this spectrum. What a spectrum disorder means is there are huge variances, like just how many colors of blue are there? There are really not two children with autism or aspergers alike. What this means is there is a list to officially diagnose this. Techincally it does take a psychiatrist to diagnose. But read the list, it is pretty straight forward. http://www.autism-biomed.org/dsm-iv.htm this link gives the diagnosing criteria. If you have aspergers you have PDD they cannot be seperated, just like if you have chicken pox, you have a rash. However you can have some autistic tendancies or a lower pervasive development and not have a diangosis. This means you have some things that put you in that catagory (sensory issues) but not enough to qualitfy for a diagnosis. Kids can "outgrow" this. That doesn't mean they weren't ever PDD, it means that they have great coping skills, although techincally they still have those symptoms they do not hinder their life. For example my dad probably would have been diagnosed pdd growing up, to this day he really isn't very social, he would rather not look you in the eye, but he bookwise knows these things are important and makes a huge effort. But when we chat he doesn't give me eye contact. This is a man who is a retired colonel, and a retired supt of schools. He obviously overcame this. So what to do about your grandsons. First you have to accept it. Maybe try to join a support group. And then make a plan to fix it! Maybe it will work, maybe it won't, but you can't give up. Feona offers some great ideas on social stuff. But also remember to cut a little slack because this isn't easy for him. When my little guy was preschool knew he was different, he was my youngest, it was obvious to us, not to strangers though. BUT we also didn't think the pdd fit him. He does have some tendancies, but instead of 6 criteria he has two or 3. He still isn't normal, he is quirky, in a cute way some days. At a preschool level he was borderline aggressive. What I had to keep in mind is why is he aggressive, was he mean? Was it more accidental? That goes alot into whether it is ODD or something else. My son gets rough, he usually starts out hugging, then ends up in a choke hold with someone. His intent was not to hurt, but to show affection. Now either way this is NOT okay behavior, but it clearly shows it is ODD, but not knowing his limits (sensory issues we think). This can be a long road, but it can also be a great adventure, you will learn more about children than you will ever hope to. My son has shown me things that I never saw with my other two. His view on the world is so different. Sometimes it is harsh (we had a pe coach die, his assessment when asked if he understood what this meant, was "yes, new coach".) My child is not diagosed, we get no services, when he was 4 he qualified, but tested out by years end. He obviously isn't as severe as others. But he definetly has some tendancies. I disagree with Feona that you would know. I think you do know when your child is different, when they need more help that others their age. It is hard to say they are different enough to need a diagnoses, but deep down, having two typically developing children, the amount of worry that goes on about school and placement is not normal and you do know that something is off.
Thanks, Kaye. The information you provided is helpful. Thanks to you too, Ginny. I'm busy this afternoon but will email you when I have more time. I appreciate everyone's responses.
Joan, I've read your post, and most of the responses. I don't have much time right now, but I'll post again later. I just wanted to offer hugs, because I know you've struggled with this so much.
Kaye, good post, good information, good advice. Joan, whenever you feel up to it - your schedule, not mine.
I actually don't think anyone needs a diagnosis. What I like about getting a private testing is it is the parents information. You can share it or not. But if someone says oh he has what every you can cut them off and say.. No we had him tested and he doesn't have that. Or you just keep quiet.
http://www.autism-pdd.net/DSM4.html Thanks for that web site. All I could find before was asperger checklist for adults which isn't useful at all for a five year old. That website is really very clear. I think I finally understand what aspergers is. From that then ds doesn't have aspergers just a social delay. He just has one of the social criteria, which is he isn't up to his classmates with his social skills. But that is what I mean by people assuming they know what something is and labeling people. Asperger's disorder (sometimes also called Asperger syndrome): this diagnosis refers to children who have PDD as described above (severe difficulty in social interaction and verbal and nonverbal communication, have a narrow range of interests and repetitive behaviors) There are alot of criteria to it so it would be hard to fit in that diagnosis.
Feona, I disagree. Every child who has learning disabilities needs to be properly diagnosed. Whether it is done through the school system or privately is the parent's choice, of course. The advantage to private diagnosis is, as you say, that it won't be in the school records. The advantage to having it done through the school is that because it is on record, you can demand the appropriate kinds of assistance for your child and, with the federal mandates, you are absolutely entitled to get it. Which doesn't mean there won't be a battle often, because the assistance is usually costly in terms of school budgets. I have seen reports of more than one lawsuit about just that issue in my area - mostly the parents won and the school district had to provide the appropriate assistance.
I agree with Ginny. A diagnosis means HELP. Feona what your son gets for help is just unheard of in texas. You are really fortunate. The only way to get a shadow teacher here is by lawsuit and they certainly wouldn't do it in preschool. In our preschool program now there are 2 teachers and 6-7 very autistic, nonverbal kids. They would all benefit from one on one, but they don't get much. We do have a school age child that gets a shadow for half of her day, she is completly blind and needs quite a bit of help, again only half a day of help. By kindergarten age the schools here require a diagnosis to continue with services. The school does not diagnosis a condition or a syndrome, but a need or a delay. If speech is delayed you get speech x amount. By kinder age you must qualify in two areas, (speech is different) but you cannot get OT if you don't also fall in another catagory. What an official diagnosis does is it lets you qualify for help under "other medical condition" or you can 504 which gets you an IEP. It is very hard to not be in denial that something may be wrong. I know I read and dissected that list many times. For me the biggest red flags are just spending time with others his age. In preschool (typical, not sp ed) there was not another child like him. He didn't talk to his teachers, he didn't look at them. He wouldn't sit in circle, when he painted he was just very very intense. He has come a long way, BUT he is still different. He makes noise nonstop, usually talking about something, but sometimes singing and humming. He has unusual interest in the creative arts. His lifes desire right now is to go see phantom of the opera, that is what he was for halloween and listens to the cd at least weekly. He is very very passionate. We went shoe shopping, he really needed the exact same brand of shoes he had on. Now two years ago if we couldn't find them he would have melted down, this year he looked for himself, analyzed what it was he liked and found a very similar shoe. I have two other kids, I know these behaviors are not normal. Are they bad? Not really, they have their moments. But I worry about him more, I worry that his teacher won't like him and will be mean, that he will quit working for her, etc. These are my signs that he doesn't fit in the box. He isn't dx, but he is defintely has some tendancies.
Well all I can say is that the school district definitely got their moneys worth out of what they spent. I almost fell off my chair when the speech teacher said ds was above average in speech - understanding speech and expression and articulation. He still have the social speech delay - called pragmatics... Okay so at least we know to focus on the social analysis and emotional area now. It is like I know what area we have to work on so that at least is a relief. The speech delay was such a horror because you didn't know what he could understand. Now I can just assume he understands everything we say. It is such a relief. I still might explain things two or three ways if it is a new concept. The special education shadow helped ds so much. He learned so much about controling himself this year. Pulling himself together and not letting his emotions rule him (like a melt down). I do the same thing with ds shoes. I cut to the chase and tell them this is what he wore last year do you have the same style? We have three stride rites near here and I usually have to visit two of them to buy him one pair of sneakers. But I am that way too. I buy six of the same sneakers if they fit.(I should buy more) Because if I don't, I pay with my knees and back hurting for six months until I find a pair that fits right.
Joan- I would highly encourage you to consider getting a MEDICAL diagnosis for your gs's. There is only so much that a school can do for a medical issue. I know. BTDT! Asperger's is extremely difficult to diagnose. It requires a team of people. Some of those people are teachers/school officials. Another part is the medical community. Early intervention is key as well. THe faster you get an accurate dx, the faster you can know what to do to help. As far as being overwhelmed, try to take it one day at a time. I know that is hard to do, but focusing on that just makes it a little easier. You can email me too if you are interested in more specifics: dougandlauramain@msn.com
I just wanted to say I was praying for you and your family. Its obvious how much you care about these boys. My nephew is autistic and my sister is a single parent. She gets a lot of help from my parents. She actually lives with them right now. I see how it effects them and it is hard for the whole family. I agree with what someone else said. Getting an official diagnosis is the first step. There is a lot more you can do if you and the school know all they are dealing with.
I really appreciate all of you for your responses and support. I love this board!
Joan, I know how hard it is to know "something" is wrong but not know what it is or what you can do about it. Do either of your grandsons have formal diagnoses of anything on the autism spectrum? My ds does have an autism dx and he's gotten a ton of services, one-on-one therapy 40 hours/week until he was ready for school. He then had a shadow aide everyday at a typical preschool plus supplementary therapy for the rest of the day and now he has a shadow aide at a typical kindergarten with additional therapy in the afternoons and on Saturdays. He could be receiving speech therapy and OT if his therapy program wasn't helping enough. The regional center also offers free counseling for family and provides respite care for the children so the family can get a break. I know that if one of my kids is acting up (disabled or typical), it seems to set off a chain reaction with the others. And I know that they tend to act up more, when my dh and I are feeling tense or stressed. Yes, you are at the beginning of a long journey, but it can get better, especially if you can find some services that will help them with the behavior issues. I remember not being able to see the light at the end of the tunnel when my ds was first dxed. Now I can't imagine how much trouble we would have, if we didn't have the help we do. Lots of hugs, Joan! It's such a tough thing to deal with.
Joan, you said their parents want them kept in a regular classroom if at all possible, but maybe that's not the right choice right now. Of course, I won't pretend to know what is right or wrong for anyone's child, but I get the feeling from your post that it's causing more problems than not. Just a thought. Either way, many hugs to your family, because I cannot imagine the stress this is causing. I hope things even out, and the boys do better this coming week.
I spoke at length this afternoon with my dil regarding the boys and what has been done thus far in regard to diagnoses. The older boy underwent an evaluation over three years ago by the Developmental Evaluation Center in our county. At that time he was seen by a variety of disciplines including among others a psychologist, an occupational therapist, and a speech therapist. He was officially diagnosed as Autism Spectrum Disorder. Someone on the team felt that Aspergers might be a possibility, but others felt that it was not. Before the team settled on Autism Spectrum Disorder, they considered a variety of diagnoses including Bipolar Disorder. His maternal grandfather is Bipolar. The school system is in the process of scheduling a full evaluation for the younger boy. He did receive a speech evaluation at the beginning of the school year and is getting speech therapy twice a week at school. We are hopeful that the one-on-one aide will be in place beginning this coming week.
Joan I can certainly understand your frustration! However, I am willing to bet that the "Developmental Evaluation Center" is part of the public school system, right? And whether it is or isn't an OT or SLP can't diagnose autism or bipolar. I have my questions as to whether a school (versus a clinical) psychologist could make those distinctions. As an SLP I can tell with close to 100% accuracy when a child has an autism spectrum disorder, but I can't diagnose it because it is out of my scope of practice and would be unethical. In those situations I tell the parents that I suspect ASD and why and then I refer them to a psychologist or neurologist; usually the latter. I wouldn't think that bipolar couldn't be dx'd without bloodwork, so I would think a psychiatrist would have to make that call. Also, ASD is not a "consensus" dx. True, there is no bloodtest, MRI, standardized test, etc. that says "yes! this child has ASD," but there is specific DSM-IV criteria that are quite clear-cut. He either has the symptoms or doesn't and if he has enough of them then he is on the spectrum. I would agree that Asperger's is a diagnosis that is made a bit later because one has to judge if the social issues are related to maturity or something else. Basically, Asperger's is autism without the significant language problem--the behavioral, cognitive, and particularly social skill problems still exist. I would highly recommend finding a neurodevelopmental pediatrician to evaluate both boys. I hope you get some answers and some peace soon. (((Joan)))
Pam, the Developmental Evaluation Center isn't part of the school system per se but is a state funded program whose main purpose as I understand it is early intervention. My dil says that a psychiatrist was also on the team and that the psychologist was a clinical psychologist. I think that the team is reluctant to give a "firm" diagnosis when the child is only three at the time of the testing, but they have to give some kind of diagnosis so that the child will qualify for the needed services. The DEC paperwork list Autism Spectrum Disorder with other diagnoses as having been considered and perhaps being looked at again at a later date. I believe he is listed as Special Needs--Other Health Impaired on his school paperwork.
It sounds like it's time for another evaluation. THat was a long time ago. It sounds like he has an EIP (if he's listed as Other Health Impaired).
That is what john is listed as special need other health impaired. I was like... what ever... I know you have to put something down...for him to get his services... When you don't fit into any category. Doesn't sound like the psychologist gave him any tests... But maybe I am wrong.. It takes like a hour and a half to give the test. (If you rush the test) Ask the mom questions(like a questionaire) ... ect.. iq test too. They check his eye contact. John had one of those test when he was two years old. All they were looking for was pdd or autism. A developmental psychologist gave the test to him... Not just any psychologist gives these tests... You have to have the special training to give the test. We are doing the testing again through my mental health insurance. Going back on June 1..
Feona, it took the entire morning for him to be observed, tested, and evaluated by members of the team. Then in the afternoon his parents went in to hear the results and answer any additional questions that the team had. His parents had filled out a questionnaire a few weeks earlier and mailed it to the Center. However, I do think it would be a good idea to have him evaluated again as he was three when the testing was done and is seven now.
Joan- It is extensive testing and it should be. Four years is a long time in between though. Especially if they weren't sure then and there are still concerns now. It's not fun, but a necessary evil if you KWIM....
It is a rigorous testing process. It is done annually here, after a diagnosis is reached. I would really suggest having this done again. It may help clarify some of the trouble and a firm diagnosis really helps clear a path through such an unknown area. Joan, I hope you are able to remember that you are doing everything in your power to help your dgs and that your family is doing a great job, even if the results are the perfect outcome.
The occupational had me do a questionaire. But that wasn't a developmental evaluation just a questionaire relating to ot issues.
We did a questionaire through our psych also, twice actually. As far as OT though our testing was much more hands on.
We also had a questionaire for the OT, but that was for Sensory Integration. Fine Motor was evaluated hands on. Ame
Right the questionaire was on sensory integration.
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