First Floortime Consultation ( VERY LONG) | Autism PDD
The Dr. it seems, may have been so caught up in her belief in "the present",
that she forgot to talk about the future. I didn't hear much in the way of
hopefulness coming from her
Gosh yes I think you just hit it on the head - that was one big reason I felt so flat with her - I thought she would re-energize me - Instead I found - that I was having to protect my own inner optimism from the experience.I am sure she did not intend it that way - its just what I felt.
Thanks everybody for the really encouraging words
Well we had our first meeting with a Floortime psychologist – this Dr comes well renowned
Overall it was WELL below my expectations ( as much to do with my expectations as my actual experience) – particularly since we spend just below 500 dollars and drove a total of 400 miles for a 2 hour consultation
We had to drive 200 miles away and stayed over at a friends place the night – I and DH got chatting with these friends and did not sleep till late – net net even R slept at 12.30 am and woke up at 7 am
Then he was not too hungry so he did not eat properly
Plus the Dr’s office was a new place and so
He stimmed stimmed stimmed- ran around aimlessly – he would engage with us when invited but basically wanted to stim and nurse and was stressed out because I did not
While I explained that he was stressed out and the doctor said she would not evaluate him in that from her recommendation was pretty clear that she did evaluate him and probably thought that we were making up all the stories about how engaged and affectionate he is a lot of the times with us
These are the recommendations that we are going to follow through with him:
1. Heavy on Sensory diet- she strongly stressed that R has a Regulatory disorder and that we need to provide lots of sensory stimulus to him – this is different than just using sensory play to build communication – She said sensory stuff is the end in itself for R not the means to an end – this is her primary recco – she said we should be really serious about this like put him in swings 8-10 times a day
2. Sing+ Swim + Sensory : Sing – instead of use language for even everyday stuff - l ike this is the way we take a nap …. Take a nap… take a nap …
3. She also told me not to feel guilty if I could not do enough for him
These are the reccos we are taking with a pinch of salt
1. She was quite disapproving of “drills” (ABA??? )
2. She thought we should not work on Speech right now – just on sensory stuff
3. Continue to nurse as he uses it to regulate himself ( I agree and she is right but I am SOOOOOO sick of it – I would LOVE to wean )
Overall – I was quite disappointed. I cannot quite put my finger on why!
The doctor and her office was really nice- she stressed the importance of stressless parenting and also the uselessness of labels – she did not once use the word ASD
But I had higher expectations – From Greenspan’s book I had thought that a DIR consultation would have a much more detailed evaluation of R’s strengths and weaknesses – instead of a snapshot based on a little time in an office.
I felt that she saw R’s weakness and not his strengths—I felt that she saw his as very primitive for some reason I also felt guilted when she told me that I should live in the moment! She is totally right of course but I felt less inspired and less energized – The trip really drained me
I suppose I had expected to come back energized about DOING more with R but I came back less so. DH and I also decided not to go to the November conference
We are still VERY positive about Floortime.
I just feel a little down inside – R is really progressing so sloooooooowly and of course I know the importance of staying positive and enjoying him (I really do )
But there is no getting away from the fact that I am a little discouraged right now
Hi
I am so sorry that this meeting did not go as you had hoped. However, it sounds like you got a few things out of it.
My son's developmental ped. didn't want to give him speech until he had
a few months of ABA under his belt for attention. However I got
her to write script for speech and ds has been going to speech and I am
just now seeing that his speech therapist is doing speech stuff more
than play stuff with him. But it has taken about 4 months to get
him used to sitting in the chair for her and focusing for a half hour.
She also wanted to treat the sensory stuff first before working on the
speech piece. She seems to think that ds's problems are much more
related to SID than anything else.
We also have our first meeting with a floortime consultant this
week. Ours is on Friday night. I will let you know how it
goes. I already sent back a questionaire for her to reveiw before
she gets here. It should be interesting.
I hope that after a few days you will feel better about the visit. Are you planning on contiunuing with her?
Have a good night
I have found over the years that different techniques oftentimes "war" with each other about what is the best way to approach a child, but the truth is that they ALL have some value, and what works entirely depends on a combination of the child and the adults around him. My motto, when my son was little, was "try everything." Of course, it's imperative that a parent know what "everything" is. But the proof is in the pudding, not so much in the evaluation by a stranger, albiet a very well-informed stranger. If YOU know Floortime techniques and have tried them and have found that your son responds, then use those techniques. If you give them a fair shot and you see no progress, try something else. Your gut is a fairly good guide.
I think you just experienced something that is SO true in this field -- there is no one answer, and that whatever the answer eventually is lies in your son and you, not in "consultations." I am not suggesting that consultations are bad. What I am saying is that they are probably more informative about what to try than about what WILL work with your particular child. My guess is that your disappointment lies in the fact that you were pretty well-informed about Floortime to begin with and that you were hoping that an "expert" would have clear insight into how it could work with Rohan, in particular. The truth is, no expert can truly know by looking at a child for a little while. They can only tell you what you already know. How it will work with Rohan you will only learn through regular experience working with him (which I know you do). There comes a point when we parents have to stop learning and start trying. I know that my own experience was that I kept seeking out techniques and opinions and answers in part to avoid DOING. Not that I didn't DO, but I kept searching for something that really doesn't exist. ONE ANSWER FOR MY CHILD. There is no such thing. Each of our kids progress based on two thing: 1. What their innate potential is -- and no test can really assess that accurately, IMHO and 2. Outside input. The Outside Input part is individual to the child. I KNOW you were trying to seek individual answers. But the truth is that only someone who both KNOWS your child well and KNOWS various techniques well AND has worked with your child over time can actually tell . And usually can only tell by keeping pretty accurate date, day to day. If you believe Floortime can work with Rohan, try it intensely for awhile. Keep a daily journal. Even keep data. My guess is that you do not lack information and that pursuing information further will be a waste of time, effort and money. Instead, just consistently try the techniques you think might work and see what happens. Graph your results if you think that will help. Use the money you would otherwise spend on "experts" to hire some college kids to help you if you think that might work. There comes a point of TMI -- Too Much Information. The truth is that what works for a particular child become clear once the technique is used consistently for awhile. Or it becomes clear that that particular technique is not useful at this time. Anyway, that has been my experience.
Sorry you were dissapointed, though I can relate. THe last dev pedi and the psych have been very dissapointing. They did the same thing, not believe me about the strengths. The dev pedi actually argued with me, like I didn't live with my own child. They think we are in denial as to how bad it is. Take that with a grain of salt. I'm glad you are taking the ABA thing with a grain of salt too. She believes in floortime and sees it as the opposite of drills or ABA. This is the speech path we see too, though I really haven't seen any speech happen over there, it looks like a continuation of the floor time therapy they were getting in DC. She too says drills and sees a kid sitting at a table being ruthlessly drilled for long periods of time. That doesn't happen in my house. Every floor time therapist I run into though thinks that way, so don't let that turn you off. Can you give him something else for regulation? THis is the reason I have had such a hard time breaking the bottle habit, they are using it like R is using nursing. It regulates them. I'm going to talk to the OT about that, we have to come up with something else they are too old for a bottle. Can he drink out of a straw yet? One suggestion the speech path had was to give them thick liquids from a straw like milk shakes, it would satisfy the sucking need they still have and might help calm them. But they didn't like that idea, doesn't help they don't like milk. Are you going back to this person?I agree with tzoya. One kind of therapy isn't going to reccommend others, and they will say you need mostly theirs.
That being said, you know what your son needs and you know what you need! Like the breast feeding thing- if you need to stop stop! He will learn to regulate himself in other ways. The longer you wait, the harder it will be. My son drank water in a bottle for three days before he would drink out of a sippy cup! Transitions are hard at a young age.
Don't worry about his progress. He will tell you when he is ready for things and will have spurts of learning. I would do as much as you can and like you said enjoy it. It's so difficult at that age-my son would cry and cry and I would be so depressed. I wish I could've came here.
Sending positve thoughts your way! Hang in there!
Sorry it didn't go as you had hoped.
I think the one thing that struck me as odd too was the speech...seems odd that they wouldn't want to push that as much as possible...but I'm not a doctor so maybe they have more reasoning for it.
I'm glad you are staying positive about what you believe in, even though this didn't go the way you hoped!
Take care and try to get a good night sleep, you've earned it!
On the breast feeding issue, I weaned my 2 year old(NT so far) at 23 monthsbecause I needed to take meds that she couldn't be exposed to, and she's
still not sleeping through. So don't wean thinking it will help sleep!
Sam (ASD 10) breast fed untill he was about 3.5. he fed through my
pregnancy with Imogen (NT8), and then tandem fed. There's nothing better
for engorgement than a nursing toddler! Lol Sam stopped feeding all by
himself. I have no idea exactly when his last feed was, I just realised one day
that it was a long time since he'd had a feed. We had the never offer never
refuse philosophy of weaning. It was very gentle for both of us!
How old is your son kajolit?
I'm sorry to hear you are disapointed , but if you know your son needs speech ,you should get a second opinion then. My son's first doctor never thought he had a problem and the second doctor gave a dx right away and requested me to take more action in terms of having more ST and OT. Give it a try, see someone else.
Kajoli
I just want to add that Greenspan himself in "The child with special needs" emphasizes that short sessions at clinics do not provide an accurate way for evaluation of ASD kids. He mentions several times that an evaluation is accurate when it is done through long observations of the kid interacting with his immediate care givers, and definitely when it is not one of those bad days of the kid, who has neither slept enough nor has he eaten proper breakfast. So please do NOT be disappointed. Keep up the good work. You are the best person who can evaluate your son as you see him everyday.
Daddy
Chibbylick - I think that is the best method to wean - only thing is that the end sometimes seems no-where in sight as in he is soooo not ready to wean
Moses Jr - mommy - R has no speech - I think she thought that we totally need to focus on other issues not on speech ( as-in and she did not say this - so I am completing her unspoken words/imagining then - he is not ready for it yet )
I'll speak to the breastfeeding issue, as I only have a minute right now.
We did child-led breastfeeding, and he did eventually wean on his own. I suspect he would have weaned a lot sooner if I hadn't had the second child. All of a sudden he saw his little sister nursing and he ramped back up for a few months, although he wasn't nursing all the time by any means. At around 3ish his nursing greatly reduced naturally. I am not sure exactly when he quit because the last few times were really spread out.
Although I chose to do child led, it isn't for everybody. My theory on breastfeeding is that I "insist" for the first year, then between the first and second year, I move slowly from insisting to waiting for their request. After two I don't feel bad if I have to say "later" or put some limits on it.
Personally, I think the benefits to baby mostly outweigh the inconvience the first year, but after that it really needs to be a mutual relationship. If you are hating it, then you probably should wean. Don't do it if you think it will help the sleep issues though. For a long time, that was the only way he could fall asleep. One day, he decided on his own to try and go to sleep on his own, and then it was back and forth for a while until he was able to consistently get to sleep on his own. It would still be another year though before he slept more than about 4-6 hours at a time.
If you are getting guff from family about "still" nursing and want support, you can try attachment parenting boards like mothering.com's discussion boards. (they also have a SN forum there that is pretty active)
HTH
"Speech" is more than the spoken word. It's the ultimate way we humans relate to one another. I think you really ought to get a public educational evaluation for Rohan, if that has not already happened. I forget how old he is, but EI exists in every state and they MUST evaluate. By 3 (before his birthday for the eval), he will qualify for an IEP, with all the interventions required. Of course, as parents we often want to go beyond the minimum. But the schools MUST provide the minimum. IMHO, that would include AT LEAST 20 hours of ABA.Kajoli, U have already recd a tonn eof great advice here.. infact I myself am jotting down so many wonderful suggestions to try with my daughter. Just wanted to send u mega hugs.. I know u feel bummed bec of what I call 'expectation -outcome mismatch'.. but hang in there.
Just one thing... abt speech... I know the consultant said R may not be ready yet - I actually sought a LOT of advice on this one bec as u know, my daughter has NO speech. Everyone, just about EVERYONE suggested that it may seem like the therapy is lost on her but I should doggedly continue with speech 1X a week. I myself thought that ABA was good enuf but a very close friend of mine who is a therapist (for preschoolers in NY) "imlpored" me to continue speech!! Just my 2 cents.
Regarding nursing/bottles:
Long before I ever dreamed T was on the spectrum, I kept her on a bottle (of 1% fat milk, gradually decreasing the fat content), as a part of "attachment parenting," until she was 5.5 YEARS old. I let HER lose interest, by herself ... and it was when we went to China, one year ago, and she hated the taste of the (high fat) milk there, that she stopped asking for bottles. Once home, she never asked again. I know 5.5 sounds extreme, but we were just very low-key about it, and it worked well for us. Her brother two years younger stopped at about the same time (but did not go to China). I think it just depends on the child.
It is very American to force weaning. In Guatemala (where T's little brother is from), some kids are kept on formula in bottles until school-age! I think there is even a formula made for pre-schoolers. And that is not because the parents are lazy ... and the kids are not obese or malnourished, from it.
I just feel it is a wonderful self-soothing or regulatory tool, and they are only little once.
I know very little of breast-feeding, myself, but I would think some of the more natural nursers woulf be fairly easy to transition to.
I think her advice made sense ... and it is something you should INTEGRATE into what you already know about R and Floortime, and what you are doing with him. Perhaps given time you will see the consult in a different light?
That is a great suggestion on the INTEGRATING - this one of the reasons that I wrote such a detailed post as I want to come back to it next month and see if I think differently
I think the one thing that struck me as odd too was the speech...seems odd that they wouldn't want to push that as much as possible...but I'm not a doctor so maybe they have more reasoning for it.
I felt the same way - I certainly thought that a means of communication( if not speech specifically ) would be emphasized - I even asked her about The Affect Based Language Curriculum - which is the Floortime speech therapy - but she said that would come later
We also have our first meeting with a floortime consultant this week. Ours is on Friday night. I will let you know how it goes. I already sent back a questionaire for her to reveiw before she gets here. It should be interesting.
I hope that after a few days you will feel better about the visit. Are you planning on contiunuing with her?
Yes I think we will continue with her -but probably meet her very sporadically like every - 4- 6 months - She comes very well reputed and I really dont want to pay the heavy consultation fees - I would love to hear what your experince is like
There comes a point when we parents have to stop learning and start trying. I know that my own experience was that I kept seeking out techniques and opinions and answers in part to avoid DOING. Not that I didn't DO, but I kept searching for something that really doesn't exist. ONE ANSWER FOR MY CHILD.
You are soooooo right - I think that is why I am sad - I thought I would get a magic answer - like some of the examples in books where the parents are talking about how their child now talks up a storm, argues with them and is ready for college
Can you give him something else for regulation? THis is the reason I have had such a hard time breaking the bottle habit, they are using it like R is using nursing. It regulates them. I'm going to talk to the OT about that, we have to come up with something else they are too old for a bottle. Can he drink out of a straw yet? One suggestion the speech path had was to give them thick liquids from a straw like milk shakes, it would satisfy the sucking need they still have and might help calm them. But they didn't like that idea, doesn't help they don't like milk
Great idea ! I have been using dum dums
I agree with tzoya. One kind of therapy isn't going to reccommend others, and they will say you need mostly theirs.
Mi MOm So right and you are also very very right about enjoying my son and his childhood and stopping with all the anxiety
He mentions several times that an evaluation is accurate when it is done through long observations of the kid interacting with his immediate care givers, and definitely when it is not one of those bad days of the kid
Daddy that is exactly why I was so surprised - he devotes an entire chapter to emphasize why its so important that the evaluation be not like this
Part of the reason we chose the providers we did was the fact that they incorporate different therapy approaches. Our speech language pathologist and our VB/ABA provider both use Floortime. From what I've observed with my own child, the VB/ABA and the Floortime work well together.
WiMom That is awesome - I wish the different schools of thought learn from each other
Just take on board what you think is appropriate and try to get some time to do something for yourself and refuel. I feel you on the breastfeeding thing too, Nina is 16.5 months old and I'm beginning to want to wean too. She still wakes during the night for a feed and for once I just want to sleep right through
I hear you on the nursing - I was planning to nurse for 6 weeks and now 2years 10 months later !!!!!- That is my gameplan - I am going to take what I can out of this and I have actually scheduled a massage for myself tomorrrw- the first time I have ever done something like that - its my birthday present to myself I kind of agree about the speech -- BUT -- I think you could start working on speech and signing as a part of your Floortime activities, just not the VERY rigid, drilling-style therapy most therapists provide at that age. Just a guess on where she was coming from ... Sorry you were disappointed, and yes it probably was to do with her NOT evaluating R directly. It probably felt like she was paying more attention to her beliefs of what to do for ANY kid that age, rather thna tailoring it for him, no? I think her advice made sense ... and it is something you should INTEGRATE into what you already know about R and Floortime, and what you are doing with him. Perhaps given time you will see the consult in a different light? I dunno, but don't get discouraged -- you are a GREAT mom and you are doing a LOT for him. And lastly remember, our kids do progress in bursts. He may not appear to be progressing that fast, but he will consolidate it all at once and BAM! You will only then know your work is paying off. Is ABA on the menu for R?? In all honesty, we have had wonderful experience with it. Hi! I think it was suggested to wait on speech, because if his senses are not integrated more, the speech will not come. Speech therapy sessions will be the child not wanting to sit and engage. Intense sensory therapy first. I had to do this with my son=and his speech is following. A Lot of singing! Good luck don't be discouraged! Ok... Here is my 2 cents in and also what I am doing: 1. Doctors: I felt from what u wrote that she should have taken into consideration all the stuff u said R does and the fact u r in her office and it is a new surrounding etc.. The pschologist we got evaluated him at home. She felt that this is the most natural setting. She also spoke to our ABA therapist and observed him in his school and interviewed the teacher. A total of 8 hours. Her report sounds worst than what my ds is, but that is what it needs to look like if I want the district to cough up the fees for ABA. 2. Floortime is great, and I know people who swear by it, but from what I saw with ABA (if properly done), involves floortime and discreet trial training. Also language or communication in general is a major aim. Ofcourse, u cannot work on language until u have compliance and attending under control. That is what is going on with us and ABA right now. Compliance and attending and thru them we have a great improvement in receptive language. 3. Breast feeding is the best, but if u r ready to quit, then I would seriously consider it. I am all for the attachment, but having R become more independent is also an aim. I remember in one of ur posts u said when ur parents were visiting, he was upset because he didn't have 100% of ur attention. Is ABA on the menu for R?? In all honesty, we have had wonderful experience with it. I'm sorry to hear you were disappointed with the consultation. Part of the reason we chose the providers we did was the fact that they incorporate different therapy approaches. Our speech language pathologist and our VB/ABA provider both use Floortime. From what I've observed with my own child, the VB/ABA and the Floortime work well together. I really like that the psychologist told you not to feel guilty. That's great advise, even if it's hard not to feel guilty at times. Wishing you the best.
Anyway (((HUGS))) I hope you feel better soon and you are the most important person who needs to know what your son's strengths are so don't get too down about her not seeming to see them.
Kajoli, sorry to hear your appt left you feeling a little "flat".
The Dr. it seems, may have been so caught up in her belief in "the present",
that she forgot to talk about the future. I didn't hear much in the way of
hopefulness coming from her. NOT that there is no hope--just that she
lacked in that area of communication, you know? She didn't focus on his
strengths, enough--something like that.
I do think you are a fantastic mommy, and really smart, too. I know all the
info you gleaned will soon "settle" in you and be integrated into your life in
the best way for you. Does that make sense? Trust your gut, as you always
do, and you will know what advice to take, and what to discard. Your son is
so lucky to have you.
[QUOTE=Lalloo75]
Yup - totally - he currently is getting 10 hours and we plan on adding some private so when it all ends in 2 months - private ABA will pick up where EI ABA left off - I am glad your little guy is liking it
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