IMPORTANT QUESTION re: intense treatment
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| Thu, 10-06-2005 - 10:56am |
I've posted a couple of times recently about my son (will be 3 this month) and the fact that his Ped has referred us to a Neurologist to evaluate my son for PDD. I am going crazy waiting. The more I wait and read I see behaviors in my son that I read about and then I break down all over again. Logically, I KNOW it's not the end of the world. I mean, if he had a terminal disease, THAT would be the end of the world. We can work with this and get through it, I keep telling myself between me losing it and going into hysterical crying fits.
But my question.. Okay, so the doctor says he has PDD, then what? For those of you who have older kids that are functional and "undistinguishable" with their peers, what kind of treatment/therapy did your child receive for you to get to that point? I was talking with my Mom last night and we said if there was some sort of intensive program in a major city somewhere. If it meant taking off work for a month and going to Atlanta and enrolling my son in full time, month long program that would make significant progress, I would do it. Does anyone know anything about a program like that? Or what did you do? Thanks! Searching for info....
Melissa

Not to speak for all of the BTDT's on our board, but...
Most of us here will tell you there is no such thing as a "quick fix" to PPD-NOS/ASD. The reality is the diagnosis is a lifetime diagnosis, because there simply isn't a "cure". There are lots of different therapies that help children make progress, but spending a month in an "intense treatment program" isn't likely to make the impact you're hoping for.
Lots of people have great success with ABA/Floortime- others have had great success with GF/CF diets. Still others have found that meds have done wonders for their child(ren). Each child is different...therefore successful treatments vary from child to child. What works for one, may not work for another. This is one of the most frustrating parts of dealing with the "spectrum". Not to mention the fact that the Dx's often change as the child matures.
For example, I have two on the spectrum. My oldest was originally Dx'd PPD-NOS. His Dx now is Asperger's. He's very high functioning. He takes meds, we've worked with him on understanding social cues, and working through the impulsive behaviors that his obsessive tendencies invoke. For the first time he acts (almost always) like a normal 2nd grade boy. In fact, we've yet to have one negative report from his teacher this school year. But it took patience. Lots and lots of patience, dedication, and more than anything, acceptance. We don't have to like the Dx...but we accept it for what it is, and make the best of every situation.
My youngest who is much lower functioning needs a great deal of sensory input to make it through the day. She has significantly delayed verbal skills, so she goes to speech therapy. She's low-tone, so she gets physical therapy. We're just trying meds with her, and so far we've not seen any noticable difference in her behavior. Every day is a question mark with Claire. Some days are great, others are...well, not so great. But with every little achievement, we celebrate! She ate a spaghetti noodle for the first time last week and I thought I was going to cry.
Please understand, I'm not trying to scare you...I just don't want you to get your hopes up for a "quick fix"- it's not the way it works. And if there was such a thing, chances are ALL us here would've already done it...and therefore, wouldn't NEED to be here anymore.
Good luck, and best wishes-
Amy W.
Believe me, I understand where you're coming from! My DD is almost 4yo, and while her appointment with the dev ped isn't until November, we're fully anticipating a PDD-NOS diagnosis. It's been a long process for DH and I, coming to terms with the fact that DD is "different" from most other kids her age, that she not only needs help, but needs a significant amount of help. I remember the first time I told DH that I thought we should get her tested, and he said, "What are you talking about? She's brilliant!" Which she *is*, of course: she's brilliant, and funny, and wonderful. She's also speech delayed, low tone, motor skill delayed, and has a hugely difficult time in social situations. The difficult part for us, as always, is keeping in mind the first half of the equation (how wonderful she is) while always remembering the importance of the second half (that she needs lots of sustained help and support).
My big question has always been, and will always be, like you said, "What now?" What can we expect for her in the future? When will she be able to go to school with NT kids? Will she be able to function as an adult in the world, and what kind of life will she have? The most frustrating thing is that no one can give me answers to those questions, because no one knows how well she will respond to treatment/therapies, in what way her diagnosis will change as she grows, and about a million other variables. It's so hard for me, this not knowing. But everything I've read has suggested that the most important thing is sustained, long-term support. We've noticed changes in her already in the month she's been to school -- she's using sentences more, and she seems MUCH more comfortable with her peers -- but it's a two steps forward, one step back kind of thing, and we're prepared to be in this for the long haul. There's only so much she can digest at once, and she needs time to process everything she's learning, so the improvements really are incremental.
I am *very* new at this, so I'm thinking that the BTDT people on this board will have much better advice than me! But I just wanted to let you know that your feelings about all this (including the crying fits) are sooooo normal. ((HUGS)) to you, and I hope that your appointment comes quickly and goes well...
Jennifer
Dear Melissa,
First of all I am sending you my hugs and prayers. But you know, it's ok to cry hysterically. You need to talk about it a lot. Waiting is killer and when you do get the dx, even if you were expecting it, the whole grieving cycle starts all over again. You have to work through those feelings yourself and with your family and you will. Let yourself experience the sad feelings, it is ok.
Something that helped me during the waiting period was trying to educate myself more. It's so hard to know where to start, isn't it? I recently found a good book I wish I had when we were at your stage of the game. It's called "The Autism Book: Answers to your most pressing questions" by S. Jhoanna Robledo and Dawn Ham-Kucharski. It's very short and easy to understand and one of the authors has an ASD child. Another good book is "Overcoming Autism" by Lynn Kern Koegel and Claire LaZewbnik, also mom of an ASD child. Knowledge is power, you know?
My son is still young and we've only been dealing with ASD for a little over two years, so our experience is still pretty new too. We have seen tremendous gains since we started our therapy program, which includes speech therapy, occupational therapy, floortime, and dietary interventions. It is a lot of work, but it is so worth it. When your child finally talks or meets any milestone, it will be every bit as thrilling, maybe even moreso than if it had happened on the typical time table.
The good news is your child is young and there is so much that can be done at this age. People who work in speech therapy or occupational therapy are some of the most wonderful people in the world. They will become your best friends and will help you fight this. Alas, I have to agree that there is no "quick fix" but there are lots of therapy options and you will have to learn which one is best suited to your child's needs. But the professionals will help you, they will.
When we got our diagnosis (also by a neurologist who specialty was ASD) he gave us a thumbnail of the therapies he recommended. I bet your doctor will do the same.
I want to say this gently, because it is the hardest thing for me still, but we all have to learn to accept that differences in our children are just part of who they are. I am even starting to see that it is partly what makes them special and beautiful. Like any parent, our job is to help them make the most of their strengths and to work with their weaknesses. You will learn how to do that. And I know you will be happy again too.
One final thought. When I was at your stage I didn't yet know about this board, so you are a step ahead there, bc the ladies here are so smart and wonderful. I did find one blog useful, it was called "hidden laughter" (hiddenlaughter.com, I think) and if you look back through that mom's diaries from the diagnostic stages, and see how far her son has come it will give you hope. I also liked the idea of "hidden laughter" bc it seemed to describe my son so accurately. There is joy inside our children, we just have to learn how to find it.
I will really keep you and your family in my thoughts.
Love and hugs,
Katherine
Thank you for your replies. I guess what I was trying to say is, that I'm not looking for quick fix (well, okay, that would be great but..), but just something intense to get him started in the right path. Something that will make a big impact. I know it will be life long for us. I just want to know if there are some specialized programs that people use outside of what the school system offers, or if that's it. Does this make sense?
Melissa
Melissa
Mom to Andrew, 5yrs old, Autism, Microcephaly
Melissa,
I think this is a hard question to really answer. Basically, what works for one child may not work for another. All of our kids are a bit different. I don't feel that there IS one route to go that will have a big impact on your child. It's sort of a combination of things that you have to implement. Some kids do great with ABA, others do great with RDI, Floortime. There are also special diets that have helped some of our kids too. Some have turned to vitamins or supplements, as well. Then there's, occupational therapy, speech therapy, etc.
The best advice that I can give, is to do your research. Find out info on all of these things, and go over this info with your dr. Your dr is sure to have advice on which route might work best for YOUR child's specific needs.
Here are some things to keep in mind too. Most autistics are visual learners...pictures. This really helps. "Showing" them what you are trying to teach them....VERY important. Speak slower, more precise....don't use alot of big words or too many directions....that's confusing. Routine and consistency.....and I can't emphasize how important this is. Go over things, repetition. It helps.
My son is 6 1/2, dx'd HFA when he was 5. I've learned alot. And I work on everything with him, everyday, all the time. I don't set aside "teaching" time except for schoolwork things. I spend alot of time repeating myself, going over things, and showing him how to do things, how to say things, etc. The only therapy he gets is speech at school. He was already past most therapies when we got him dx'd.
I did the same thing when he was younger. I didn't know he was autistic back then. When it was time to learn how to use silverware....I taught him. When it was time to learn how to talk...I taught him. I was determined to make sure he met all of his milestones just like his brother. This approach may or may not work for you. It really depends on your childs needs. This is where discussing with his dr....will really help in determining what would benefit your child.
I sure hope this helps. It is a tough road. There are always decisions that have to be made. I'm always facing them myself.
Michelle
Melissa,
There are lots of therapies out there, some are good and some are quacks. (And some may work great for one kid and yet add to another kid's problems. Sad thing: no way to know until you try!
My very best advice to you: No sudden moves. Wait until you have assimilated some of this information, have educated yourself and feel a bit more comfortable in this new world. Unfortunately, there are people out there only too happy to part a concerned mother from her hard-earned cash.
Some rules of thumb:
* If it sounds too good to be true, it probably is.
* Look for established and well-referenced therapists.
* The greater the promised reward: Usually, the greater the risk.
* Look for research information and backup for any claims made.
* Make sure therapists are licensed to practice *this* therapy in your state.
* Check background on any Dr or therapists: board certified, members of professional bodies etc. If they are not qualified; take your child and run.
* Trust your gut: If something "feels wrong" it probably is.
Two tales from my personal experience:
My sister fell out with me because I refused to remortgage my house to take Peter to Florida to swim with dolphins for a month, because she read somewhere that it ws a cure for Autism.
I once called a lady about biofeedback therapy, only to discover although a psychologist, she was not licensed to practice biofeedback therapy, and had never worked with a child with Autism. Needless to say, I dropped her like a stone. She called and bagered me for months -she was dying to experiment on my son. Or get my money. -Or both.
Just be careful, that's all.
(((hugs)))
-Paula
visit my blog at www.onesickmother.com
I very much agree that there is no one thing that will help all kids. Many of the posters have mentioned making gains from different types of therapy/diet/meds and it's obvious that different things work for different families/children.
But for us, the best therapy is no therapy. We've never considered doing ABA or floortime or diets or anything (and we dumped speech therapy years ago) but despite this, 8yo DS is making HUGE gains. In our family we don't try to make him less autistic - we've simply learned to try to reach him on his level.
For my son we've seen progress with the following therapies:
Nutritional Supplements 2-4 X day
Heavy metals chelation (Cutler protocol)
Sensory Integraton Therapy
Physical Therapy
Theraputic Listening
I hope you find the right combination for your child+++++
Samantha
I'm just chiming in here to say that if you are really interested in big initial investment of time and money, there are a few programs, but we haven't done them. You can look them up online, though, and read their material and books and talk to people who have done them, though.
We have practised RDI (Relationship Development Integration) with our son, and it is a step-by-step therapy for teaching social interaction and connection. You can go to RDIconnect.com and read more about it. They offer workshops around the country, also, you can fly to Houston where their center is and get training and help. I don't know about scheduling, etc., but they seem lovely. We have had RDI work done with our son at his ASD school, and we practise it some at home. We have definitely seen improvements in the more modified approach we have taken, and the more intensive treatment might help your child as well. And, the real thing is, YOU are being trained to be the therapists ongoing, which is very empowering.
Also, the Son-Rise Center in Massachusetts offers an intensive program, but as I really know little more about it, I can't offer more. You can google them to start finding out more. I talked once with the cured "son" of Son-Rise, I was trying to book him as a speaker, but schedule didn't work out. He was fully autistic because his parents created this program.
Good luck to you. I can totally understand where you are coming from, and hope we can continue to be of some help as you start to figure out your next steps.
yours,
Sara
ilovemalcolm