Hi - just joined

PersonalEnigma

New Member
Hi everyone. I've been lurking for a couple of days and think that maybe this might be a good place for me to crash for a while. I am a 32-year-old married mother of two. My oldest is a difficult child with various issues. difficult child is 8 years old and has been diagnosed with Autism/Aspergers (not really defined and probably Pervasive Developmental Disorder (PDD)-not otherwise specified would be more accurate), ODD, ADHD, anxiety, sensory issues and CAD (central auditory processing). He is really a great child in so many ways, but he can also be a huge challenge. My youngest is a easy child (or at least so far) and is only 9 weeks old. difficult child adores her and is great with her, so that thankfully isn't as issue. My husband is 34 and works out of town. He stays with his folks near his work (2 hours away) during the week coming home on weekends and Wed nights to take difficult child to Cubs.

I guess compared with what many of you have experienced things are not bad with difficult child, but I am worried that one day things will be much worse. He certanly has become more difficult over the last year. We try really hard to make things work, but poor husband gets very frustrated with difficult child and I sometimes feel like washing my hands of him.

Sometimes difficult child seems so dense... He is unwilling to accept any responsibility for his actions and when he does he turns it to negative self-talk calling himself stupid, or claiming that he has no control over the behaviour. He does the same idiotic things over and over again and doesn't seem to learn from his mistakes. It is exasperating.

Anyways, I am sure that you will hear plenty more from me :smile: I look forward to getting to know everyone.
 

mom23gsfg

New Member
im new here too.and all ready i have found help with many of my questions.ive just got one question for you...i was just wondering do you know if anyone at all at school and ect. has ever called your son stupid?
my ex used to call my children that and so did his peers at school later on when he couldnt do something in class.so he started calling himself stupid when he didnt get something right at first. and wouldnt try even the simplest tasks.
kids can be cruel... and cause alot of stress in other children.
 

PersonalEnigma

New Member
I am sure that he has been called stupid by others. I know at home I do my very best to not let him get called names, but it has slipped out at times (usually in reference to a decision etc) from various sources (my husband, my father, possibly myself - I really don't mean to but am not perfect either). I don't know that the negative self-talk is just from that though - he has always been a perfectionist and very hard on himself when he doesn't get something right (even as a baby).
 

Marguerite

Active Member
It's very stressful when you're parenting an Aspie or autistic kid. You need to change your mind-set if you're going to be able to cope and also to be able to give them a chance to progress.

Several things -

1) Don't compare him to other kids. Some things are much harder for him and he will take a lot longer to reach those milestones. Other things work much more easily for him. Let him value his abilities but not see his slower areas as his 'fault'. Even with the things he can't do - he WILL get there. It just takes a lot longer and a lot more patience.

2) Explain to him what Asperger's is. Don't describe it as a disability, but rather describe it as a different way of brain functioning. People learn in different ways. He needs to find the way that works best for him.

3) He will do better with encouragement, support, positive motivation. He will do badly with punishment, chastising, ridicule and negative reinforcement. He will not cope with sarcasm - it is confusing to those of literal minds.

If you can, get your husband to lurk or post here. It really can help a lot.

A good book - "The Explosive Child" by Ross Greene. Find a library copy if you want to go cautiously. It helped us enormously. It helped us change the way we saw difficult child 3, as well as how we dealt with him. He's now doing a lot better (and so are we). It's not perfect, but it used to be a lot worse.

Marg
 

BusynMember

Well-Known Member
Is he getting supports in school/community that specifically address his Pervasive Developmental Disorder (PDD) issues? I have a son with Pervasive Developmental Disorder (PDD)-not otherwise specified. He was pretty clueless at your son's age and is still clueless by the standards of others his age, BUT HE'S REALLY LEARNING. I can't tell you how much growth he has experienced.
Pervasive Developmental Disorder (PDD)-not otherwise specified is not a behavior problem, it's a neurological problem. The wiring within these people are different and they often DON'T get it. More than behavioral intervention they need life skills, social skills, often Occupational Therapist (OT), PT and Speech (because even if their speech is good, they often don't know how to express themselves or hold a give and take conversation). My son would have been a lost soul if he hadn't had that extra help with almost text book learning how "typical" people think. He is still different, but he's going to live a rich, full life, even if he needs a little support as an adult. I would focus on Autism interventions because that's what Pervasive Developmental Disorder (PDD)-not otherwise specified is (atypical autism). Any child on the Spectrum in my opinion benefits more from interventions than therapy and behavioral mod. They don't have psychiatric problems. They are really different and need to learn things that others pick up just through watching others--and they need it spelled out for them. Did he get Early Intervention in school at three? What is he getting now?
Hey, and welcome to the board :wink:
 

BusynMember

Well-Known Member
Oops. Just noticed you're in Canada. Do they have supports and early interventions for Pervasive Developmental Disorder (PDD)/autism in school there?
 

PersonalEnigma

New Member
Thanks for all of the support guys :smile: It has been a very difficult road here. It will take a while to go through the basics of it, so bear with me.

I remember difficult child having some odd characteristics when he was very little. He would learn a new thing (like rolling, etc) at a very early stage, then after doing it consistantly for 24 hours+ he would "forget" the ability until the tail end of the "normal" range. While I thought this was quite odd no-one else really thought much of it. difficult child was an easy baby and generally had no real difficulties. He was slow to speak, instead speaking in his own personal dialect that was understandable while not using any real words (full intonation, sentence structure etc - just no words). He got speech therapy for a while at about 2 years old. He was slightly below average but still withing "normal" ranges.

I have always felt that difficult child was exceptionally bright, just held back by some kind of difficulty. Unfortunately due to this brightness he would test within the "normal" range. This has made it very diffucult to get support and understanding.

difficult child was very good at home until school started. We knew how to work with him and adjusted our lives to work with his needs. Sure, he would argue sometimes and have difficulties, but we would answer his questions believing he actually wanted to know the answers and feeling that he was generally a great, biddable child.

The only real difficulty I found was at my inlaws. They would let difficult child get away with all kinds of things that I would never let him get away with, countermanding my authority and generally making things worse when he was there. I eventually stopped disciplining him at their place as I felt it was better to not disipline than to have my discipline overridden. (They have since learned the error of their ways, but at the time they were impossible.)

When school started we saw the first real problems. He was non-compliant, showed sensory issues, was physically agressive and generally didn't fit it. When I attended school with him he behaved reasonably well, knowing that I would not let him get away with anything. Unfortunately the teacher had no authority over him and being one of those teachers who believe that all kids are good (even when obvious cliques have formed in the classroom and bullying is evident in front of any involved observer) and who never raises her voice or otherwise shows firm discipline. She did not know what to do with difficult child and he was sent home 1-2 times a week (out of 2-3 days of school).

We went to a parents' educational program held by a mental health organization. I found it very interesting as I discovered that I was using all of the techniques they reccommended on a daily basis with difficult child. In fact it made me realise that perhaps there really was something more serious going on and that difficult child needed support.

My husband really never believed that difficult child had anything wrong with him. Ironically he had all of the exact same difficulties as difficult child as a child, although he was less explosive about it. Even now he really does not recognize the problems, although it is getting more and more evident over time. While husband is a great father I have not had a ton of support from him - he will stand by whatever I decide, but doesn't give me a lot of input.

We decided to work with the children's mental health group a bit more closely with their individualized program. I honestly felt that depression or some other mood disorder was what was affecting difficult child. They did some testing, but instead of seeing what I saw (that difficult child scored lower in some areas because he was being helld back) they only saw that he was ahead in some areas and "normal" in others. They didn't seem to see anything in difficult child's rather unusual behaviour throughout the testing (climbing under the desk, oppositional behaviour, quitting when things seemed difficult, but then doing better if pushed past the temporary block, etc - I observed the whole thing from the other side of a 2 way mirror). Instead they decided that difficult child was too young to be checked further and that the issues came from the family situation (admittedly we were having some difficulties at the time, but difficult child's problems did not start due to our current difficulties...). husband felt that their primary goal was to get us to divorce (not true, but considering that he has many of the same authority issues difficult child has that was his take on things) and we decided not to continue with the organization's support.

We tried half days with difficult child for the rest of JK and into SK. Half-way through SK I suggested that we slowly start extending difficult child's day so that he finishes the year with full days. The teacher looked at me in shock and basically suggested that difficult child was out to get her and that he was deliberately trying to make her life miserable. I promptly pulled difficult child from the school and homeschooled him for the rest of the year. He'd already lost so much confidence and self esteem from this school and this teacher and I wasn't going to put up with it any more.

Unfortunately I am not a good homeschooling candidtate as I am not that organized. For grade 1 I sent difficult child to a private Christian school. This was a great situation for him as they had strong moral codes and really worked hard to support difficult child's needs. He was in a tiny class of 7 kids, 2 grade 1s and 5 grade 2s. He slowly regained some confidence in himself and generally did quite well. All of the teachers loved him (he has a very kind heart and is very giving and forgiving under normal circumstances). He was also quite popular and every kid in the school knew who he was. He still had his problems, but the school was working hard to help him through them.

Up to this point I had not succeeded in finding a Pediatrician for difficult child. I wasn't sure exactly how to go about it and started out with a psychiatrist's examination (I still felt that depression was a large part of the issue, that or some other mood disorder). He was very controlling of the examination and not very cooperative. The psychiatrist basically found him to be a strong-willed child but didn't really find anything specific wrong with him. I don't personally think that she had a chance to really get to know him... The report from the appointment was never sent to my family doctor despite being requested, nor was a copy sent to me (as requested).

Sadly the school difficult child was at for grade 1 closed due to a lack of enrollment. I searched for another option that would work as I would not send him back to the school he was supposed to go to in this area. Fortunately we have the right to ask to move to a different school in the same board (not that they have toaccept us) as long as we provide transportation. I worked very hard to find a new school and finally difficult child was accepted to a nearby school where I have finally gotten the support he needed.

After having difficult child a very short time the principal decided that difficult child needed a full time EA to support him in the classroom. He has frequent melt-downs and doesn't know how to manage his moods. Grades-wise he does reasonably well (not great - but 90% of that is behaviour-related) so the support is more in learning to manage his behaviours. His grade 2 EA was fantastic. Unfortunately he had to get a different EA this year (grade 3). She's also a great lady, but has less experience with difficult child's types of problems.

We did finally get a pediatrician when difficult child was in grade 2. After seeing him for the year she came up with his diagnoses. I really don't feel that they are quite right, but at least with them being made official they guarantee that difficult child has the support he needs at school.

difficult child's autistic tendancies are very mild. I do understand that they make him think and react differently and generally I am quite tolerant. husband is less tolerant, but he tries. I have done a ton of research on autism/aspergers/Pervasive Developmental Disorder (PDD)-not otherwise specified and other related issues (FGF best suits something called semantic-pragmatic disorder, but no-one here recognises that one *sigh*). Right now the ODD tendancies are at their worst that they've been. difficult child will do anything to gain attention and does not really seem to get the difference between positive and negative attention.

It has been especially difficult lately. difficult child is the type that sometimes needs a physical touch or a physical restraint to break into his "world" when he gets carried away by a behaviour. Well, because he is affected with sensory issues he often perceives that contact as something more severe than it really is. One night at a Cub sleepover he would not settle down and was jumping everywhere in his sleeping bag. husband (who attends all Cub events - difficult child's behaviour is such that he needs parental support to be manageable and to have a good time) grabbed him (after multiple attempts to get him to stop verbally) by the back of his pjs. difficult child felt that husband was choking him. Well, on Monday, back at school, difficult child told his EA that his dad choked him... Out came Children's Aid to talk to us about abuse... Fortunately after meeting difficult child in person and talking to his teachers and EA (who really don't feel there is any abuse - they know difficult child, but also are legally obliged to report...) she understood more about difficult child and didn't believe that there was any abuse involved.

Poor husband was terribly upset about all of this. He is terrified of having difficult child taken away. Also he works for the school board and is terrified that even the hint of a child abuse claim could lose him his job. So husband has been a lot less tolerant of difficult child lately. This has been rather stressful for me. I also have been more busy than usual with easy child who is exclusively breastfed and very hands-on.

Anyways, sorry this was so long. If you made it this far I'm impressed :wink: I really do try my best with difficult child and try to take into accounts what he can and can't control. It is just very frustrating as his issues seem to keep getting worse, especially as they have been showing up at home when before they were only a problem at school.
 

Mrs Smith

New Member
Welcome to the club! My difficult child is a quirky mix of many different diagnosis's also and the mood issues are still our biggest problem. With puberty and the increasing pressure to conform each year, we see an increase in unstable behavior at home. Finding the right medicine has definitely helped. So has social skills therapy and an IEP (school accomodations). Sounds like you've got a good understanding already. Keep searching for the help you need. Good luck!
 

Marguerite

Active Member
This could be controversial, but don't think of him as having "mild autistic tendencies but more severe ODD tendencies." Instead, think of it as all autism-related. Although difficult child 3 was never diagnosed with ODD, he probably would meet the criteria. "Explosive Child" helped us a lot, but when we really dig down into it, the ODD-type stuff we see all comes down to the autism and difficult child 3's way of coping with it all.

Home-schooling - there are other options. We have a great system here, where the state education system has an enrolment option that works similar to home schooling except they have teachers on call, over the phone, to talk him through the work. They mark the work which I supervise and post in. The school posts the work to us. It's all designed to work in writing, which suits autistic kids well because most of them are visual learners. Often extreme visual learners.

But that is Australia. However, I believe there are similar systems available as 'on-line education" or similar. We have difficult child 3 enrolled in "Mathletics" which is an online software system geared to our school curriculum. It costs us A$99 a year, which is far less than certain un-named maths education systems being privately promoted. This could at least take care of the mathematics component of his education.

You describe his problems as really beginning when school started - that is a red flag. And the language delay - another red flag. It means that you really need to help him with his written communication, there are some tricks you can use depending on how he presents. But autistic kids are often not very good at composing text, especially fiction.

You also describe problem in-laws plus a husband who was similar - chances are, your in-laws saw nothing out of the ordinary because husband was the same. A lot of these things have a hereditary component. It's quite possible husband is also somewhere on the spectrum - we think my husband is too.

Hang in there, read the book, find your level and be prepared to give home schooling another go. If you do, there is a lot of support and resources to help you set it up with a minimum of fuss to you.

And if you don't - we're still here, all decisions are respected. But I think it will only make the oppositional behaviour worse, for many reasons I won't go into now.

Marg
 
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