Resources/books/cd's/etc..................please!!

[Hanging-On]

I need to why he does/doesn't do things. What his diagnosis's really means in the real world. To bring all the technical mombo jumbo into normal explainations so that I can UNDERSTAND WHY!!!! things are the way they are........AND......how I can help my child....ME, not a therapist, not a doctor....but ME. Do the lights need to be soft, does he need a quiet dark room with big pillows, should I message him, not feed him carbs,

Sorry I had to exit real fast, and then come back in, so I'll continue.)

I need to find some great website, books, cd's, video, whatever so that "I" can teach myself becuase NO ONE is answering the question why???????????

Why does he spin? Why does he bounce from one couch to the next? Why does he spiral into major hyper when a person comes over? Why does he lay upside down to watch tv? Why does he HATE baths, but loves to play with the water hose outside and get soaking wet? Why does he love hot peppers even though they upset his GERD? Why does he purposely bang his knees, run into the wall, fall down, etc when he's totally hysterical and spiraling into the out of control touchiness that EVERYTHING hurts him, but it does it on purpose? What do I do to help him? What do I do to reduce sabotaging him just because I don't realize the lights are to bright and THAT is triggering a rage?

I JUST WANT TO KNOW WHY..........SO I CAN HELP MY SON LIVE IN THIS WORLD AND NO ONE IS ANSWERING THE QUESTION.

All I get is "we don't know", "we don't care or focus on the why but on the behavior", etc.

Does anyone have any good books to read on all of his diagnosis's:
Pervasive Developmental Disorder (PDD)-not otherwise specified, ADHD, SEVERE SENSORY INTEGRATION DYSFUNCTION, SEVERY DYSLEXIA IN ALL TYPES, MOOD DISORDER-not otherwise specified, (I'm forgetting some, but they're in my signature).

Thanks.

 

[Josie]

Have you read "The Out-of-Sync Child"?

I don't have a child with Sensory Integration Disorder (SID) but I've been told that is a good book. Since no one else answered, I figured I'd give it a try.

 

[nvts]

Dear Hanging-On,

Keep hanging-on! Take a look at the following website:

http://www.parentingyourcomplexchild.com

The woman who wrote the book and created the website has been through a lot.

I understand the "why" question. Sometimes it's karma, a stiff wind, a smell, a taste, a worry. Anyway you cut it, it's still driving you nuts.

I get the sense that you're trying to get a grip on something that you very well may not get a handle on. If they could answer "why" they could cure it. You're the voice of frustration responding to the childs cry in the dark. He's bouncing off the walls because something is stimulating him. Today it could be a tv show; tomorrow it could be the smell of cookies baking; the day after it could be something you read to him. It's often the way these kids express themselves (happy, angry, tired, sad).

Try a "weight vest" for the running into walls, etc. goes on. It's supposed to give them "sensory calming" when they can't seem to stop going for that need to feel that "impact". Is he getting occupational therapy? If so, ask them to look into brushing techniques, weight vests, etc. to help him stop looking for the impact.

Hates baths but likes the hose? Try installing one of those removable shower heads that let you take it down to rinse. He might soak the bathroom, but it could help.

Adding my hugs to you (I have to take Heckle, Jeckle and Clyde up to the 1.5 hour fight that we call bedtime!) and I'll check back with you.

Feel free to pm if you just want to talk with someone who's "so there" with you right now! (you don't EVEN want to know!!!).

Beth

 

[Steely]

:reading: I don't know why, nor does probably any book or video that you find, because our children are each unique with their own little subsets of various disorders.

My son, does not fit any one diagnosis, and your difficult child probably does not either. All I can say, is that we were put in their lives for a reason, and perhaps that reason is because we are the ones who can care for them the best. Intuitively, despite a diagnosis, I know what my kid needs - doctors, mentors, grand-parents, can blab all day long about their idealogies, and theories, but from the beginning, and still to this day, I know what my son needs more than any expert. Hands down.......I am the expert in Mat's life

Look within yourself for the answers. There are some great books out there, but if you have not found them yet, than maybe it just needs to be from your mom gut that you find the answers.

I am pulling for you! I can tell it has been a tough day! It will be better tomorrow.

 

[Sheila]

A lot of what you mention seems sensory related.

Why does he spin?

Probably related to stimulating the vestibular. difficult child could spin forever without getting dizzy. If I recall correctly, it was calming for him and helped him organize his thinking better. Swinging had the same effect.

If the hyperactivity comes across as a "bull in a China shop," it may be the need for deep pressure related to tactile deficits.

The professional that helped me understand the most was a very smart Occupational Therapist. If you can find a good pediatric Occupational Therapist (OT), s/he will be able to answer a lot of your sensory questions. It would be worth the consultation fee.

I came to understand many things about difficult child via the Occupational Therapist (OT). For instance, I use to think he was being "a brat" when he would get upset about something (usually my inappropriate disciplining) and he'd hide in his closet. The Occupational Therapist (OT) explained that he was on overload/over stimulated and needed the dark and quiet of the closet to calm himself. So there he was, instinctively knowing what he needed in order to calm down; and there I was demanding that he get out of the closet.

The Occupational Therapist (OT) told me to clear out half the closet floor, and throw a pillow and blanket on the floor.

I complained of him being "too rough," jumping on the bed, general flipping and flopping around, spinning, couldn't get him in the tub sometimes when he needed to be there (transitioning problem), then couldn't get him out (water is very calming for difficult child also), not respecting others "space," his aversion to light touch, his need for bear hugs only, yadda, yadda yadda. Many behaviors were sensory related.

The Occupational Therapist (OT) told me that kids will "treat" themselves in many areas if only parents would let them -- just keep him safe, e.g., jumping off the house not allowed. lol So I gritted my teeth and supervised the jumping up and down on the bed (a big no-no when I was growing up), let him spin until he was ready to stop in a defined area, let him play in the sand to his hearts content (he'd be covered head to toe - drop clothing at back door and hosed down with-the water hose), let him use that darn heavy blanket year round (he needs the weight), bought a gym wherein he could swing for hours, climb up and down the steps into the clubhouse, use the monkey bars, etc., etc., etc. (He also had professional Occupational Therapist (OT).)

For discipline, I learned to use "time outs" for willfulness, and age and ability appropriate deep pressure type exercise for sensory related "acting out."

I think websites by professionals are great, but I learned early on that you can't get all the information you need from just one site. Reading numerous sites is redundant in many instances, but I picked up bits and pieces of information that wasn't presented on other sites.

I also made an good effort to seek out websites on particular disorders written by an adult with-the disorder and/or parents. It helped me to be able to compare a symptoms list with real behaviors.

Of course, books such as, "The Out of Sync Child" by Kranowitz are very helpful also.

Info from parents on this board was also invaluable.

One can't take everything read in a book or on the internet as being 100% accurate, but after I've done my homework I can usually smell misinformation radiating from the computer screen when I run across it. lol

I've found a lot of answers, but the fact is there's not an answer for every question you may have. But the answers I did find helped me to understand what my son needed, what we needed from the professionals, and it helped me come to terms with the fact that traditional parenting skills and thinking wasn't going to get our son where he needed to go.

If you're wondering whether the Occupational Therapist (OT) therapy (professional and home) was successful, it was. He's not cured, but we are in a much better place today sensory-wise than we were in years past.

I don't mean to imply that all your child's problems are sensory and/or motor skill integration related. But it's a common problem with-Pervasive Developmental Disorder (PDD) kids.

 

[witzend]

I wish there was a specific book or video that I could point you to, but I am sure that others will help with that.

I think that it's good that you are continuing to ask questions. I don't know that we ever get to know "why". Being an oldster, I have to say that from my perspective "why" doesn't matter. That might be because I never figured out "why". :wink: But to be truthful, the question is a good one. It leads to many answers. When you hit on the right ones - and there is more than one "right" answer - it will be like a light bulb going on over your head. But it will only answer a part of the question.

I hope that you will keep questioning and looking for answers. It takes a brave mom to keep going on when they get to be your son's age. It seems like a lifetime ago.

 

[Hanging-On]

Thank you ALL,

nvts great suggestions, and thank you for the invitation to pm you. Sheila, wonderful explaination. You opened my eyes to alot, and what you did in that one post is what I've been asking for. Thanks.

Everyone, thank you so much. No I haven't read Out of sync child, and I really should. I remember being given that book name a while ago, and then I got busy and that info just left my mine. Great suggestion, so I'm going to look for it NOW.

 

[susiestar]

While you are looking for the Out Of Sync Child book, also get The Out of Sync Child Has FUN! It is much more helpful in giving PRACTICAL activities to help the kids.

Out of Sync Child also has a video, not as complete but great if you learn and absorb better that way. Try amazon or alibris for it. It is not always easy to find. I stumbled across it at a shop that does closeouts. MANY of my friends have borrowed it.

Our Occupational Therapist (OT) also showed us how to do brushing which you may find very helpful. PLEASE have a good Occupational Therapist (OT) show you how to do it.

They have great stuff, and the brushes are wonderful. Most cost effective site I have found. I ended up with 6 brushes for what the Occupational Therapist (OT) charges for 2. Also, if fidgeting helps, party supply stores often have things that help at very reasonable prices. I got various types of balls to handle (mostly he squeezes them, so I got different textures etc.), also very tiny closepins (spring type) from the baby shower area - we use them for fine motor stuff. MUCH more cost effective than the same things from some of the Occupational Therapist (OT) supply places.

My son (youngest, thank you) was very upset yesterday. Gma & Gpa are driving kids until my neck is better, and yesterday thank you didn't brush his teeth. He refused, said he couldn't find his toothbrush and was very attitudy. Gma stopped at a gas station and got him a toothbrush and toothpaste.

thank you cannot handle mint. If we use muscle rubs we have to do it away from him, and until the smell leaves he can't function near the person.

The toothpaste was mint. And he used it per Gma's insistence. (I fully back her up as he has several toothbrushes and toothpastes he likes and REFUSED to use them.). His entire day was thrown off, he jsut could not handle thing.

He got sent to the Responsible Thinking Classroom to calm down and get his act together. He was crying over little things, not able to stop talking etc. Most of it was over the MINT. It always does this. While he has to learn to cope, the school handled it well. I signed his form after talking to him.

This is just an example of how something you or I might not see as a big deal, but is really really a problem for him and can mess up his entire day. Add mint to worry about mom and changes in routine, poor kid just couldn't cope.

Read the books, they are amazing. Have some of the activity supplies on hand, he will often choose what he needs.

I have a shoebox size plastic drawer with the Perler beads (NOT the recalled Aquadots!) and the boards. He often will do these when he needs to fidget. I keep some of the scissor style tweezers for him to use, it helps his whatever, I just know it works for him.


Sending BIG HUGS and the HAT of KNOWLEDGE to you so you will be able to learn at super speed!!

Susie

 

[susiestar]

Also, just a general helpful site, http://www.loveandlogic.com is a great site for teachers and parents. I find it is a wonderful way to help me be the parent my kids need, and to not be the yelling, difficult me that I can be.

They have cds and audio tapes and all kinds of books and audio downloads.

I loaned the tapes I have to thank you's teacher last year over Spring Break, she said it was a HUGE help and she read the books and bought some of her own.

It isn't strictly about Occupational Therapist (OT) issues, but is just a wonderful way to handle things.

Just a thought,

Susie

 

[Star*]

One of the best books you can ever ever read to understand how a difficult child's brain is like it is

Amazon - Wilton Hellams, Ph.d - Maping

It will blow your mind about how our kids are put together mentally.