newbie

[jasz1971]

Hi! I am new to the group and wanted to introduce myself. My name is Amy and I am really excited to have found this group. I have three children Julia 8 years old, Sam 7 years old and Ava three years old. I'm joining this group for support with my son Sam who has had a difficult tempermant since infancy and was diagnosed with Disruptive Behavioral disorder not otherwise specified. My daughter Julia has an anxiety disorder called Selective Mutism and is in treatment (and making good progress!). We are currently in the process of changing psychologists for Sam in hopes for a more accurate diagnosis and more effective treatment plan. He has had a very rough couple of months and were hanging on until we can get in to our new psychologist. We have also set up an appointment for a developmental evaluation but couldn't get in until mid June. We are concerned that he may either be bipolar or possibly very mild Pervasive Developmental Disorder (PDD). He has a very rigid thinking style, difficulties with sensory processing (especially auditory), exposive, limited interests, anxious, shy, and poor independent play skills. He is also very smart, creative, sociable, and on track developmentally for the most part. He currently receives PT for coordiantion issues and Speech Language Pathologist (SLP) for articulation. In preschool he received Special Education services due to social skills/anxiety and Occupational Therapist (OT) for visual motor and sensory processing. One of the biggest issues that I struggle with is that he is very very well behaved at school (however he does look somewhat anxious). It just seems like if a child had such a serious condition as bipolar of autism, it would be seen across all settings. Do any of you have children that only have behavioral difficulties in the home?

 

[house of cards]

Hi, and welcome to the group. Major use to be difficult at home but ok at school, now he shows his moods everywhere but he is improving. I see anxiety as a trigger for most of Majors problems, it is funny how a kid can scream how much he doesn't care about school while he is upset over not understanding something that they are doing. The fact is, Major cares a great deal about school, so much so, he can't handle anything going wrong.

L is almost an angel in school, yet she also has anxiety, She would NEVER tantrum at school...she just shuts down. When she doesn't get something, she will not ask for help, she doesn't even participate when the teacher explains it. She just watches silently. At home she doesn't tantrum but she will complain and find excuses for why she can't do anything asked of her, often because of anxiety and poor problem solving skills.

I think anxiety can show in a number of different ways. Maybe it is his anxiety at school which keeps him from acting out but at home he isn't as anxious and he knows he can survive an explosion and still be loved.

 

[BusynMember]

I think you're on the right track. He does sound like he could have Aspergers--not sure how mild Aspie he is--Aspies have issues (I live with a kid who is on the high functioning Autism Spectrum Disorders (ASD) spectrum). It doesn't sound like bipolar to me--I had it, and had it as a child. Aspies often do very well in school because most are smart. Their issues are social skills and "not getting" life or societal rules. My son always did well at school too. He has never caused any behavioral problems at school. Beware: Often Aspies are misdiagnosed as having bipolar. Be very sure what you're dealing with. See a top rated specialist. If you don't, you may have what we had--a child on the Autism Spectrum Disorders (ASD) spectrum taking unnecessary, heavy duty bipolar medications, and not getting interventions for the Autism Spectrum Disorders (ASD). He was misdiagnosed. It is not rare. Many psychiatrists do not know much about neurological differences so they call Aspergers bipolar. I'm not sure WHAT your son has, but I just want you to be aware of the problems in diagnosing. That's why I'd take a child like your son to a neuropsychologist for diagnosing, not a Psychiatrist and definitely not a plain therapist or the school district. Yes, I'm wordy...lol.

If he is, I'd consider testing your daughter for spectrum disorders too because it runs in families and she obviously has had trouble speaking, which is a Pervasive Developmental Disorder (PDD) red flag. The kids DO improve with interventions, but they remain troubled with interacting with others and making conversation and abstract speech. I recommend a neuropsychologist for her too, if she hasn't seen one.
Good to have you here. Welcome to the board.

 

['Chelle]

Hi Amy With my son, the behaviors were worse at school. He did have some at home, but they were mild compared to how they were at school. And once he started school, the worst behaviors at home were usually school related (i.e. homework battles). For my difficult child, I think school was just too much out of his comfort zone and he didn't have any clue how to adapt or even articulate what the problem was. Perhaps for your son, he holds it together at school, and home is where he feels safest in letting all the anxiety etc. go.

I had to look up Disruptive Behavioral disorder, which I read is ADHD/ODD/CD, because to me is just sounded like they were saying 'your child behaves badly'. It's good that you have further evaluations set up. If you're not 100% sure the diagnosis you have is right, second opinions can only help. My son is high functioning Pervasive Developmental Disorder (PDD), and how you described your son could be describing mine especially when he was 7 and undiagnosed. If your son is on the autism spectrum the earlier he is diagnosis'd, the better the outcome can be. Our son wasn't diagnosis'd until he was 11, and he struggled until then and I despaired of him getting through grade 8. After the right diagnosis, we were able to give him the necessary therapies, medications (for anxieties/Obsessive Compulsive Disorder (OCD), for 2 years and now medication free), and accomodations at school. He just finished first semester of grade 10 and for the first year ever I have not yet had to go to school for "meetings". Hope we can get through the 2nd semester without for a record LOL. Waiting for those appointments are a pain, but hang in there. Hope you find a good psychologist soon who can help you with therapies.

My daughter goes to school with a girl with a form of selective mutism. She's on my daughter's list in her note book of top best friends, I just noticed yesterday. This girl will talk to kids she knows, her family members, a few other adults who are as well known as family members, but no one else. I've heard her talk to my daughter, and she can speak well. I'm glad your daughter is doing well.

You may want to check out the FAQ/Board Help forum on the site. It'll let you know how to do a signature like other members have at the bottom, if you'd like to do one. It helps remind people of your family etc. when reading your posts. There are also reading suggestions, explanation of some of the abbreviations people use on the site, that kind of thing.

Welcome to the site, you can find wonderful advice, and just an ear to vent to when you need one.

 

[Nancy423]

Hi and welcome!!! My difficult child has anxiety as well. When younger, she was very aggressive and had tantrums quite often at home, but would be pretty even keeled at school. then the older she got, she started "shutting down" in school when she got frustrated etc. I've seen other people post that many difficult child's have issues either at school or at home but not both. Some difficult child's come home and break down after keeping it together all day...

Just remember that YOU are the expert on your children. The professionals aren't around 24/7 and can only make infomred guesses based on what info we give them. I found the parent report to be a fantastic tool. It helps to keep everything in one place (I've found my info is blurring all together after 10 years, so this was nice for me too!)

good luck with- the new psychiatrist!

 

[jasz1971]

Thanks for all the understanding replies. S is anxious at school and very shy so I think that is most likely why he can hold it together there. Also, school is structured and he knows exactly what he needs to do and he does best when he is busy. He is very eager to please his teachers and would be very upset if he handed in an incorrect assignment or was reprimanded. I will check out the parent report and the FAQ board. Does anyone know the difference between and developmental psychologist and a neuro psychologist. S is scheduled for an appointment with a developmental pyschologist? Thanks, Amy

 

[Marguerite]

Hi Amy. Welcome to the gang.

Some things to take on board -

1) When you can, do a sig for yourself. That way you don't have to tell us all your details every time you post, because the summary will follow you.

2) Avoid using real names, for the sake of maintaining privacy. You may feel you don't need to worry at this stage, but at some point you may be grateful that you can vent here without someone tracking you to this site and watching everything you say. For example, I have had teachers locally, get copies of any articles I wrote, and circulate those around the local school. In one case what I wreote was critical of the local school and this came back to bite me (even though I hadn't named the school in any way). As a result, I don't trust those same teachers to not occasionally do a search on my real name, just to see if they can find anything they can "share around" and muddy my reputation a bit more. naturally, when I've needed to vent about these people, or to use my family on this website to plot to get around some large obstacles these teachers put in my way, I didn't want them knowing what I was about to drop on them. So I value my secret identity. I'll occasionally expose myself a bit, to share some local photos with people, but in general nobody from my home town can track me to here. I can only be tracked from here, to my home town.

Now, to your kids - from my understanding, there is a possible link between selective mutism and Pervasive Developmental Disorder (PDD). And where Pervasive Developmental Disorder (PDD) is in one family member, it raises the chances a lot higher, of other family members also having Pervasive Developmental Disorder (PDD) traits.

A kid with autism or Asperger's may do really well in a school environment because it is predictable, it is consistent, it is safe, it is organised. Where the child is able to adapt and manipulate the environment to suit his own needs for control, he will seem to blend in.

difficult child 1 was like this - his teacher in Kindergarten had no trouble with him at all, he was quiet, he was well-behaved, he was in fact a bit clingy. He WAS nervous of animals (would panic if he saw a kitten and was afraid it could come near him). His teacher would let him sit almost on her feet when she was reading to the class.
His next teacher was the opposite - a bundle of nerves who made everyone else nervous just to be in the same room. difficult child 1 drove her nuts. Now, I had been concerned about difficult child 1 for several years but kept getting told, "He's fine. Boys are different, that's all." But he wasn't fine.

A few years later, difficult child 1's diagnosis was ADHD and we changed schools. The old school - yes, he was considered to be well-behaved, but he wasn't learning anything. At the new school, they loved him to bits. The teachers liked him, the other kids liked him. He was popular, although a bit geeky. His best friend was the principal's son (also geeky). That school had no homework (except an occasional assignment, to be done over several weekends - he could manage that, with help). He presented to us as mainly a kid who was lost in the clouds, who was afraid in certain situations but who was otherwise gentle, loving and vague. However, as he came off his medications (or if he missed them) he could be dangerously violent.

When difficult child 1 was 13-14 he was diagnosed as Asperger's. By this stage he was in high school (it starts in Australia at about 11-12) and struggling more and more. Home was when we saw most of the problems, because he would be tired, medications would be wearing off and at home he could relax and be himself, while at school he poured all his effort into trying to seem "normal".

difficult child 3 explained this very well when he was 6 years old. We'd spent the previous 6 months finally explaining to him about his diagnosis, and one day he turned to me and said, "You know - I'm getting very good at pretending to be normal."

With Pervasive Developmental Disorder (PDD), the smarter the kid, the better thay can adapt (or "pretend to be normal"). Some people describe this as "being cured" but to call this a cure is to deny the constant effort that person must be putting in, to maintain that semblance of normality. (very much to their individual credit)

Autism is for life. However, it is possible for them to adapt to the point of blending in as normal. But it does take a toll on them and this needs to be recognised and taken into accout, or a sudden change can trigger some nasty surprises, stress-wise.

My kids now view autism as an important, positive part of their being, their identity. difficult child 3 met his speech therapist's highly intelligent young daughter and said, "Is she autistic?"
The speech therapist was a bit taken aback. "No, she's not. Why on earth woud you think that?"
"Well," difficult child 3 explained, "It's just that she is so very, very smart. I thought she must be autistic, like me."

Ironically, the young girl was being told (with our permission) of difficult child 3's diagnosis. She had difficulty understanding that autism is a disorder, because to her observation, difficult child 3 is so extremely functional. And very, very smart.

Some more suggestions for you -

1) Get your hands on a copy of "The explosive Child" by Ross Greene. As a new member has just reminded us, your child doens't have to be explosive, to benefit from this book. Her child is what she calls "implosive" and is therefore just as needy for this kind of different approach.

2) Have a look at www.childbrain.com. Good info. Also, they have a Pervasive Developmental Disorder (PDD) questionnaire you can do (not officially diagnostic, but still very useful). Run the questions on your children and see how the score pans out. You can print it out and take a copy to the doctor, to give them an idea of the areas that concern you.

The more I find out about Pervasive Developmental Disorder (PDD), the more I observe my own kids, the more I realise that there are more strange things in heaven and earth, Horatio...

Marg

 

[jasz1971]

Just a little more background on us. I'm a special education teacher and have worked with many children on the Autism spectrum. I have always recognized that S has had some red flags for autism but always have thought that he is too socially appropriate to fit the diagnosis. His previous psychologist thought the same thing. I recently did complete the childbrain questionaire and he scored just slightly below the possible mild Pervasive Developmental Disorder (PDD) range. We have the Explosive child book ( this approach was recommended by S's previous Pyschologist) and have been attempting to use the CPS approach-- it works sometimes but he is often too explosive to collaborate on problems even was using proactive plan b. I think it is a really good approach though! On to my daughter, I'm really comfortable with her diagnosis of selective mutism, she does not fit the Pervasive Developmental Disorder (PDD) profile at all. I had selective mutism as a child (undiagnosed though) and she fits the profile exactly. We have a great psychologist that we are working with and she is making steady progress. I do have a brother that is diagnosed Bipolar and a sister that I think may be Bipolar but is undiagnosed. (that is why I started looking into the early signs of Bipolar in children) Thanks again for all your input.

 

[TerryJ2]

Hi AmyJasz, nice to meet you.

Wow, are your kids lucky to have a Special Education teacher for a mom!

Just on the face of it, I would also say your son is in the Aspie range ... although he could have both, since you have bipolar dxes in the family. It's something you may not know for many yrs.
In the meantime, the fact that you are having testing done, and you have read The Explosive Child and put it to work for you, is excellent. You are way ahead of most newcomers here! Bravo.
Frankly, I can't help but wonder if the fact that your son's Pervasive Developmental Disorder (PDD) questionnaire wasn't as clear-cut as it could have been, is because you have done all the right interventions so far. I mean, if your son were at my house, he could have tested way below. (I'm not a completely bad mom, I just didn't know that much about child devpmnt until recently. Sigh.)

My son is "Aspie lite." He can be very socially appropriate, but only to a point. He never, ever meets anyone on his own. If he has to do it on his own, he has a fit. He will argue and literally brace his feet and legs like a stubborn donkey. But if I introduce them, or if he meets them in school, they can be best buddies. Yes, that is anxiety. But is anxiety the CAUSE, period, or is it the effect of Asperger's?

I notice that when they do the huddle and cheer at the end of his baseball games, he does what he is supposed to do, then immediately backs out of the huddle and stands about 3 - 6 ft away. This, after he earned the Game Ball 3X in a row, and his friends wanted him to have it! He can fake his way through.

I won't even begin to tell you how he has buffaloed his teachers and me over the yrs. That's where the psychoeducational testing came in handy, because it presented a true picture of his abilities and weaknesses.

One caveat: never assume that just becasue Book XYZ says "This is bipolar," and BookABC says, "This is Asperger's," that if your child does not have ALL the signs, he is not one or the other. Those are guidelines. They often state the most obvious cases. Also, and most importantly, these are spectrum disorders. That means you can be high functioning, low functioning, somewhere in the middle, or have SOME of the signs but not all.

It's also possible that he has something that we don't have a name for yet. (I often think that some dr will invent and name a disorder specific to my son, because he just doesn't fit everything. )

Also, the fact that you know what bipolar looks like in an adult doesn't mean it's the same in a child... Unless you have very clear, specific memories of your siblings when they were 7.

by the way, how did you get through your mutism? Were you tutored? (Doubtful, since you said you were undiagnosed) Or did you just muddle through? Do you recall anything specific in your development that helped you through it, a thought process or physical exercise, that you could teach your kids? I'm glad you like your psychologist and that your daughter is doing so well.

Like I said, you are way ahead of the game.

 

[jasz1971]

As far as my selective mutism, I "muddled through" as you put it. I hated school and had a very, very hard time (I slowly started talking more and more as time went on). There was no awareness of Selective Mutism at that time and still today many doctors and psychologists are not familiar with this condition. Things started to get easier for me once I started college. I still have social anxiety. I function well and cover it up but still struggle at times. Very rarely the selective mutism comes back when I'm extremely scared or upset. For example, I had a procedure done at my doctor's office last year and became so anxious that I couldn't talk for about 20 min. The doctor had no idea what was wrong with me. It was so embarassing! Like I said this is something that rarely happens. I'm hoping that since my daughter is in treatment life will be easier for her.

 

[Marguerite]

It's a pity you had to go through this yourself, but at least it gives you good insight into your own child.

With the occasional times of extreme stress bringing a short-term relapse, would it help to carry a card? Or would it be too difficult to produce a card to explain?

Are there alternative forms of communication that can take the pressure off? Or is a certain amount of pressure needed, to provide gentle pressure to take up verbal communication again?

I hope you're writing a book (or planning to). There needs to be a great deal more understanding on this issue.

With your son scoring right on the border of Pervasive Developmental Disorder (PDD) - it really is tricky when we have a kid who seems social. I do think there is a lot more scope for better understanding of kids in this region; kids who are struggling in various ways but who don't meet any specific diagnostic criteria. That can shift with time, by the way. easy child 2/difficult child 2 as a toddler, seemed to be socially precocious, academically brilliant, an ideal candidate for acceleration into school (which we did). She did well for the first few years then seemed to hit a social brick wall. At the time she seemed to be "dumbing down" to try to be popular, because she had been getting teased for being so smart. We told her she had achoice - to be popular with the social kids (who wanted her to change to be more like them) or to choose to achieve to the best of her abilities, but risk being lonely for a while at school. But inthe long term, where would her school friends be, when she was an adult trying to hold down a job? Short-term popularity really wasn't all it wascracked up to be.
At about this time we began to notice 'oddness' to some of her behaviours, the Obsessive Compulsive Disorder (OCD) tendencies were starting to become apparent. She deliberately defied her teachers several times and lay with her head on the floor during dance class instead of getting up and dancing with the others. She later tried to explain (with difficulty) that she was feeling the vibrations of the dancers' feet and trying to correlate it with the rhythm of the music. It just didn't go down too well at a final dress rehearsal!
She was always very outgoing, would walk up to a total stranger and welcome them to whatever event was on and begin to ask questions about them as if drawing them out. She was meticulous about rules being followed and also about remembering what a teacher had said. For example at music camp a teacher who didn't know her had said to the class, "Please remind me, we need to put in some time on our workbooks before the end of this session," but when later the same teacher tried to end the session without reference to the workbooks and easy child 2/difficult child 2 tried to remind her, ("Miss! You said we needed to put in some time on our workbooks, you asked us to remind you,") the teacher turned to her with a withering glare and said, "Who are you?"
Repeated incidents like this totally crushed her for days; she came home from a week of camp still in tears over this incident. I had to hear about it from her music teacher who thankfully had been there to witness it.

It is very subtle sometimes. INterestingly I think what has happend to easy child 2/difficult child 2 as she has gotten older, is that instead of adapting and blending in more to the NT people in the world, she is increasingly embracing weirdness and "letting herself go" when it comes to adaptation. "I am what I am so get used to it," seems to be her new mantra. She is still extremely sensitive and can get very shrill when she feels she's not getting a fair go. As husband says, "One day she will make someone a wonderful fishwife." What is more of a worry, is she wants to be a teacher - I really worry about how she will cope.

Marg

 

[TerryJ2]

she's not getting a fair go. As husband says, "One day she will make someone a wonderful fishwife."

OMG, Marg, that's funny!

AmyJasz, I am so sorry you had to figure it all out for yourself ... and sorry that your daughter has it, but it's wonderful that you can recognize it and get her therapy. Sort of a silver lining.

 

[crazymama30]

Just wanted to pop in and say welcome. My son actually can vary, some times he is great at home and awful at school, and then it flip flops. You are on the right track to get further evaluations. This was about the age that we started getting my difficult child evaluated, but like your son he had issues all along. Part of it for me was realizing that it was not just a "boy thing". I read many books, and still do. For me it helps to learn, to read.


Hugs, and I am glad you found us but sorry you had to.