I'm a newbie; opinions on books?

[Diabolique]

SRL -- Thank you for the advice, I really appreciate it. Tomorrow I will call the pediatrician and get the paperwork rolling to set Noah up for the full evaluation in October. This group we'll be seeing at the children's hospital does have a good reputation and if they can help me to help my son, it will be worth the wait. That's all I want, for someone to help me to help him. I will also do some checking around about the psychologist that the doctor recommended, but I will plan to schedule for the full evaluation in October regardless. I will also talk to my pediatrician about the speech testing to see what can be done about that.

My copy of The Explosive Child arrived today, as a matter of fact. At the very least, reading another book can't hurt, and if there's ANY chance that I can learn something that MIGHT help, I'll do it. Of the two other books I've read, one of the methods seems too harsh and commando-style to try without the benefit of having a fuller idea of exactly what my son's problems entail. The other book has a lot of ideas I really like that seem like they are benign enough to not hurt, regardless of my son's diagnosis. In fact, the first couple of "steps" in the second book (Your Defiant Child, Russell Barkley) are things that I should do in order to bring some healing to my relationship with my son. Perhaps once I get into The Explosive Child, I will find similar ideas.

 

[SRL]

TEC always seems unnatural at first, but as it started to work and I gained more knowledge about my difficult child's issues I realized that there were things I was doing to actually make it worse for him. We made much more progress taking the low road.

 

[susiestar]

Hi! My difficult child is older, so I don't pop in here as often as I do often other forums. In many ways your posts bring back memories.

Personally, The Explosive Child is far better than the book by Riley. I really think the Riley book may be too harsh for a 3.5 yo child. Just my opiniion, but I KNOW that following similar guidelinesdid FAR more harm to my bond with my difficult child than anything else.

In all things parenting, follow your instincts.

I found much help from Parenting with Love and Logic. For a child your age, and in your special situation, you may need the love and logic book on special needs kids, or you may be able to work best with Love and Logic Magic for Early Childhood.

The Autism society is a great place to start to find the professionals who will help, if that is your diagnosis.

Be prepared for docs/professionals who do not treat aspergers to tell you your child is too verbal, and/or has to many other characteristics that are aspergers but not straight autistic to BE aspergers. There are many Aspie parent support groups.

One of the first things you may be able to get help for is sensory issues. If I had known about these things earlier, I really think my family's history woudl have been radically different.

Get a PRIVATE (non-school based) occupational therapy assessment. They just look for different things.ASK for training on brushing therapy. The book about this (the best one) is "The Out of Sync Child" by Kranowitz. It is about Sensory Integration Disorder. Our private Occupational Therapist (OT) said that she sees sensory issues in most, if not all, children in her practice with autism. The brushing therapy is non-invasive, but is NOT to be done until you have been told it is needed AND you have been shown how. You actually CAN mess up your child's bodily functions if you don't get proper training as some areas are not to be brushed with-o causing problems beyond sensory ones. One of the other books by this author, "The Out of Sync Child Has Fun" may give you ideas into any areas where your child has sensory issues, jsut by which things are fun for your child. Again, DON"T diagnose this by yourself, but make notes to take to the various professionals.

In our FAQ/Board Help section of the CD Board, you will find a thread on Parent Input/multidisciplinary evaluations. The Parent Input is a format for structuring info about your child. A couple of parents here came up with it (and shared!!) so that you can get all the info you want onto paper and into a report to share with the docs. It will help you communicate with all the docs/"experts" you will consult.

The "good" thing about 3 months to get into various experts for evaluations is that it gives you time to get teh report together, read it a week or more later, and include the stuff you forgot. and repeat until you get it to be how you want it. I think including small photos of your child in the master copy of the report (the one you keep and make copies from) in the beginning of each section is very helpful. It makes sure the docs see that it is a CHILD (and WHICH child) they are reading about.

HAs anyone mentioned seeking help from a developmental pediatrician? They are, as I remember it, psychiatrists (MDs) who do extra training/rotations into how children develop. We got the most insight into Aspergers from the dev. pediatrician we saw. The evaluation his office did included the neuropsychologist and other specialists. While this is not common to all dev pediatrician's, it was for ours.

I am glad you found us, welcome and stick around!

Susie

 

[Diabolique]

Susiestar -- Thanks for your reply. I agree, the book by Riley espouses a rather harsh method of getting difficult child's behavior under control. There were a lot of sections, in particular at the beginning of the book where Riley describes the "rules" by which an oppositional child operates, that made sense to me. I found myself thinking, "Wow, that's my kid" over and over again. However, once I got to the section outlining his method for dealing with oppositional and defiant behavior, I found myself thinking, "Hey now, that seems a bit rough." Where Riley's book seems to differ tremendously from others I've read is that Riley seems to be operating under the assumption that much of the oppositional behavior by the difficult child is intentional. At least, that seems to me to be one of the underlying premises of the book -- and hence, the commando-style I'm gonna take you down at all costs approach to addressing ODD. In all honesty, I think that the behaviors my son exhibits are a combo of intentional and unintentional. There are times when I'm 100% sure that difficult child is getting under my skin on purpose (repeatedly doing things he knows I despise, overandoverandover again, regardless of my attempts to curb these behaviors). Other times, he seems to be acting on uncontrollable impulse and just running from one thing to the next to the next like an automaton. Very strange.

I actually *do* like the other book by Barkley (Your Defiant Child...); I'm still in the middle of The Explosive Child. Right now, I'm putting the books down for a few days because I've found that I'm overwhelmed by the amount of information I've been reading and feel like I need to sort it all out.

The more I read about Autism spectrum disorders and Aspie, the less I think Noah fits the profile. The lining up of objects isn't all that frequent, and it always seems to have a purpose. Today, he lined up a bunch of his animals: they were "in line waiting for the school door to open." And, although his speech is quite adult-like, I don't find it to be chunks of memorized speech. I don't know, it seems to me that he just speaks very clearly and with quite a large vocabulary for his age. He may come by being "good" with language naturally: I started speaking very early and in complete sentences, am usually exceptional at any task that is related to language, and am completely fluent in three languages other than English. Languages have always been a "piece of cake" to me, and that may also be the case for difficult child. Who knows? Of course, I am ruling out nothing -- I'm not a doctor! So, he will have the full round of tests in October and we'll see what the results are. I will be stunned if ADHD is not part of the diagnosis because the symptoms really "fit." As far as ODD goes, those behaviors all *really* fit.

I plan to check back in later today to get some feedback on my parents' offer to take difficult child on vacation with them. I think my mom sees that I'm ready to come unglued and is trying to help me get some distance from my child right now. It's been a rough week -- many crying jags on my part, constant battle with difficult child, complete and utter demoralization and loss of confidence in my ability to parent this difficult child. I'm not in the best of shape, to say the least. My parents would like to take my son with them for about a week so that I can have a break and get myself set up with some kind of mental health professional. I am still mulling this idea over. The only thing holding me back from saying "yes" is the fear that difficult child's behavior will ruin my parents' long-awaited and well-deserved vacation. Any thoughts?

Thanks, all! I hope everyone is enjoying the holiday!

 

[barbie]

Let me just say, I'm in Orlando, so Im fairly close, there are very few developmental pediatricians that take insurance between Tampa and Orlando. Even fewer that can get you in any sooner than three months. Try the Early Intervention Program in your county. They do an initial assessment and if your child merits further screening they'll schedule it and it doesnt cost you anything.

With that being said, atleast it sounds as if your pediatrician is "listening". When I moved here from Miami, my son was one month before his third birthday and still wasnt speaking more than two words, he was preemie, and had been evaluated at 15 months and all they could say was he had a 23% adaptive delay, to qualify for services you needed a 30% delay. At his two year well child visit, the pediatrician said he had a speech delay, at his third pediatrician he noticed Eric was "very happy" but also "hyper" hyper circled twice. The pediatrician when we moved here, didnt act as if she was listening or even wanted to help. I broke down in tears in her office and she still would say tell me what she thought was wrong. Looking at her notes she suspected, Pervasive Developmental Disorder (PDD) vs ADHD or both. Onto daycare #5 and Pediatrician #5, After going for my daughters Adderall refill she notices Erics behavior and she sent us to a psychiatrist, at our first visit he looks at me very plainly and says mommy I am 100% sure he has ADHD I am also 80% sure he has something on the spectrum. WHAT? Yes and he is too young to be put on any medications, except clonodine to help him sleep some.

It took me over one and a half years to get that diagnosis, our latest social worker, who came for additional behavior therapy services after her evaluation says he scored off the charts for ADHD, Pervasive Developmental Disorder (PDD)-not otherwise specified and ODD.

If you cant get to a doctor immediately, call a behavior therapy service they have social workers and diagnosticians who can help with diagnosis you can work from. Most insurance does cover it and they can come to your home. Its a shortcut to a roundabout diagnosis and the beginning of therapy.

 

[Diabolique]

Things have reached a real crisis point around here. I have realized, after having spent a good part of last week and pretty much all weekend crying, that I am no longer well enough myself to be of much help to my son. I came completely unglued last night after difficult child told me he doesn't love me; I sobbed hysterically for about 3 hours before finally falling asleep. I burst into tears immediately upon waking up this morning and have been in and out of crying jags all day. I am prone to depression and know myself well enough to know when I'm slipping into that vortex. I know that I am in this condition right now due to problems with difficult child and feeling powerless to help him.

After about a dozen phone calls this morning while difficult child was at Kids' Morning Out program, I was finally able to get some answers on how mental health issues are handled through my insurance. It is actually handled through my Employee Assistance Program. I have finally managed to find a group of doctors right down the road from me that have people who deal with adults and children, and the co-pay will only be $10. I have to start somewhere. The doctor wants to meet with me first tomorrow morning to talk to me about what's going on with me and my son -- she said that she wants to work first to get me stabilized so that I'll be in a position to help my son. Gee, I wonder what gave her that idea? Maybe the fact that I kept bursting into tears on the phone and could barely speak? I strongly suspect that I will end up back on Zoloft or something else. I have completely lost control of my emotions and am so emotionally raw that my sense of logic (the ability to know that my son doesn't mean this stuff he's saying to me) has gone AWOL. When he says mean stuff to me, instead of my brain kicking in, my heart just tears open and I start to sob...and I can't stop.

I have to start somewhere. I have to get myself put back together so that I can do what needs to be done for my son. I will meet with the doctor tomorrow and then we'll go from there to schedule something for my son. I'm not sure where this is going to lead, but I have to get something going so that I can have some sense of hope that it doesn't have to be this way forever.

 

[tiredmommy]

Karen... {{{Hugs}}}
I think it's wise to seek out some help for yourself as well as Noah. There is usually no magic bullet to cure our children, so you need to prepare yourself for the long haul. His gfgishness is sure to wax and wane over the coming years, diagnoses and treatment plans will change, therapists and doctors will come and go. You will be his constant through all this and need to keep yourself strong and healthy.

 

[Diabolique]

Thanks for the words of support, tiredmommy. Really, I've realized that this is bigger than me, this isn't just a matter of me getting tougher or developing the ability to let things roll off my back. I am not usually one to crack this easily, and it usually takes quite a bit to make me cry -- let alone break into hysterical sobbing that I can't stop. So, enough is enough. I can't help my son if I can't help myself. Before I spin even more out of control and can't drag myself out of the black hole, it's time to seek some help for myself so that I can do what my son needs me to do in order to help him.

It's my job to take care of him and to advocate for him. I am his first line of defense and the person who is responsible for getting him what he needs. I can't do any of those things if I am so emotionally raw that I can't get through a phone conversation without becoming hysterical and hyperventilating. My son deserves better than a mother who has become a basket case.

I haven't been to any kind of mental health professional in about 10 years. I don't even remember what it was like, so I don't know what to expect. I guess I ought to go armed with the mental health history in my family, which I found out over the weekend is more "interesting" than I had previously been told. The problems are far more extensive than I thought.

I don't know. I just want someone to help me so that I can help my son. I want my son back and I want myself back. Right now, I feel like we're both lost.