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If you had to (or do) pay for therapy... Please weigh in.

post #1 of 14
Thread Starter 

My son (2.25) has just been assessed and we've been told he has "mild autism" or simply "autistic traits and tendencies" and he is very high functioning- he also scored very highly on cognitive tests. These are things we pretty much knew- he's extremely bright but does a lot of quirky things that turn out to be quite spectrumy. He does repetitive things and repetitive play a lot of the time, isn't so great with non-verbal communication/eye contact and social stuff, speaks with echolalia (but usually in context, and does also use great original and spontaneous language sometimes).

 

We've started ABA (2 hrs/week) and speech therapy (2 hrs/week) and we pay out of pocket for this (because we live abroad and there is no such thing here as EI etc)- even with those few sessions a week it is unbelievably expensive. For the the last few weeks I've been sitting in on the sessions and I have to admit- I don't see how they are useful to my son. They are doing things that I do at home with him all the time. They seem to know what they are talking about- I've had long conferences with his speech therapist, his ABA therapist, and the dev psychologist who manages his program that took part in his assessment. And I'm not saying there is no value to what they are doing- I just know that I do the same with my son, and in some instances I am better at reading his cues, knowing what he is saying and helping him expand what he is doing and leading him. I'm not sure if this is just because we are just starting therapy- they are getting to know him, his strengths and weaknesses etc. or if it will just continue this way. I am willing to give it time- but time is money...a lot of money. 

 

I do stay at home with my son and I am very committed to doing all I can at home to help him progress and work with or overcome his issues. I'm new to all this, but I've been reading a lot and trying out different things. I'm just starting to put together a DIR/Floortime program for us at home that I think will be really REALLY great for DS and trying to set up social activities tailored to his needs. This leads me to another issue: His therapists and psychologists really want us to also place DS in daycare for his social development- they are pretty insistent that he needs this. We actually were thinking of doing this starting in January for a few mornings per week before we started therapy as we're expecting a baby in April- it would be a nice occasional break for me to just have the baby at home some mornings.

But with the cost of therapy, we just can't afford daycare. It really is coming down to one or the other. So I'm wondering if we should quit therapy and start daycare and have me do as much Floortime as I can and work with DS on his speech stuff at home (I'm waiting for some books and DVDs from Hanen to arrive). It's so hard to make this decision- I just want to do what's best for my son and I could never forgive myself if I made the wrong the decision and missed out giving him what he needs at this time in his life where everyone says the right kind of help can make all the difference. I've been worrying and weighing this in my mind for some time now and I just don't know what I should do. 

 

I'd like to hear if anyone has been in a similar situation... or if you haven't what you think about it. Any thoughts at all.

Thanks.

post #2 of 14

Ugh, my children are/were both in daycare and have had great experiences as I work full time but I would not put your child in there "to socialize" them--getting out in the world, interacting with a variety of people, with your guidance, is much better socialization.

 

I also though think you should trust your instincts about the therapy. Have you brought up your concerns to the therapists? Noticed any change since you began therapy?

 

My son was in a social skills group for a year, out of pocket, expensive and a long drive away. I thought we could stop it after a year, but he lost the ground he'd made fast over the summer. I found another group that was closer (but just as expensive) and it was totally worthless to him--we'll be going back to the far away place as soon as we can figure out the scheduling.

 

In sum, trust your instincts but keep communicating with the therapists.
 

post #3 of 14

All the "experts" say is that the earlier intervention begins (and continues) the better off the kids will be.  Your child should qualify for services through your county's early intervention program.  Reach out to them.  They should be providing speech, OT and PT (if necessary) at low to no cost (usually based on your income).  Usually much less expensive than going privately.  Then, when your child ages out - your school district would be required to provide those services.

post #4 of 14
Do you have health insurance? Can you push them to cover part of the costs of therapy?

Are there any therapeutic preschools where you are? That might be just the solution, if something like that exists there, because he could get therapy while at school/daycare. I don't really know anything about resources outside the U.S. -- does the school system support special needs? If so, can you get him into the system early? Is there something equivalent to Head Start?

Right now DS is just getting play therapy, but before he was receiving OT too, and with both I've had the same hesitations as you seem to. I know it's not harming him but I can't see how what they are doing is substantially different than what I already do with him at home all day every day. It's had to say if it's worth the money or not, but I feel like something is better than nothing, and I'd rather go further into debt & at least say we did our best, than tell him someday that I just didn't think getting him help was worth the cost. Therapy is covered by our insurance but we still have copays and it's adding up fast seeing as we couldn't make ends meet even without therapy!

I don't believe daycare is necessary, best, or even at all helpful for socialization... though for your sanity it might be needed! But if it's a choice between therapy & daycare, with the focus solely on what might help your DS the most, I'd spend the money on therapies.

Have you talked to the therapists about your concerns? Have they shown you a treatment plan, and what their goals are? This alone might help you feel better about it (or give you the space to clarify or push them on certain things). You can also ask them to design a home program for you. If you can implement part of the therapy at home yourself, you might be able to cut back on seeing the specialists as often.
post #5 of 14

This is a really tough call. We've paid for some things out of pocket. At times, I felt like we were throwing money at the problem because we didn't know what to do. It's really hard to say what will make a difference for a specific child.

 

What are your preschool options like?

 

My thought is that having other people trying to engage with your son is the important part. Although you can do similar things to ABA or speech therapy, you cannot be someone other than mother. Sometimes, being better at reading him isn't an advantage -- it turns into a crutch.

 

We moved to get my DD into a school that was better suited for her, and we are happy with that decision. Getting into the right school has been remarkable for her. But that doesn't mean that the preschool that you have available is the right school for your son. I recommend really looking into the options you have an how you think they might work for your son. Visit them with him.

 

If I could go back in time, I would have hired people, like baby sitters, to just play with my DD or make art or what ever. I tended to see her challenges in terms of specific skills that she needed to extra time and help to develop, but ultimately, it is her difficulty in connecting to people out side out immediate family that is that most challenging for her. 

 

(BTW, my DD is 16 and has autism and an IQ in the gifted range)
 

post #6 of 14

We had to pay for almost everything out of pocket because of insurance laws in our state.  The school district offered ABA, but we refused it on the grounds that it did not address any of our son's core issues and actually made his anxiety much, much worse.  2 hours of ABA per week does not help anyway.  Once we got his anxiety under control through floortime at home, we were able to enroll him in a public preschool program for children with autism.  In our son's case, it has really helped him to learn how to develop relationships with people outside home - if fact, I would say that's been the most important part of his therapy - he's 11 years old now.  We did pay for speech and OT when he was young, because we had specific goals in those areas.  There are lots of ways to stretch your therapy dollars, for example, a private gymnastics lesson is $30/hour, whereas OT was $120/hour.  Music therapy cost us $25 per 30 minute lesson, and incorporated all of our speech, OT and social goals.  Floortime is free and takes very little prep - just start with 10 minutes at a time, always keep your goal in sight.  Read Engaging Autism and Play to Talk for ideas to get started.  Also considering bartering your talents or professional skills for therapy services - my son gets a free social skills class because I made a bartering arrangement.

post #7 of 14
Thread Starter 
Quote:
Originally Posted by Qestia View Post
I also though think you should trust your instincts about the therapy. Have you brought up your concerns to the therapists? Noticed any change since you began therapy?

We are still feeling things out. I do bring up my concerns to the therapists, I talk a lot to them and am very frank with my opinions and questions while staying open to their ideas. I have told them that I don't want to focus largely on things like "training" my son to sit in a chair for long periods of time and other things like that that seem to come with the ABA program. He is an active 2-yr old who doesn't watch tv or movies- he's not used to sitting but he can when he is focused and concentrating on something that's interesting to him. They were happy to go along with my request- now his ABA therapist seems to be focusing on things like joint attention, eye contact, interaction etc. I'm just not sure it's making any difference, and as I said, we work on those things at home. As for the speech therapy- I have not noticed any change. My husband sat in on one session and thinks his speech therapist may be affecting DS negatively! I find when I focus on one thing that DS needs to work on for a few days to a week (he recently made big leaps in making requests "I want" instead of "You want" or echoing questions), we make huge progress at home- but it seems his speech therapist can't get him to talk much which is so strange because he is a huge chatterbox, and I can't see what she's trying to really DO a lot of the time. She also works on eye contact and stuff like that I guess. One of DS's main issues is echolalia and I've read in HFA kids this largely remains but grows more "natural" and "functional" over time anyway. And I do see that happening. But no change that I can attribute to therapy.

Quote:
Originally Posted by SpottedFoxx View Post

All the "experts" say is that the earlier intervention begins (and continues) the better off the kids will be.  Your child should qualify for services through your county's early intervention program.  Reach out to them.  They should be providing speech, OT and PT (if necessary) at low to no cost (usually based on your income).  Usually much less expensive than going privately.  Then, when your child ages out - your school district would be required to provide those services.

As I said in my previous post, I live abroad. Things are not the same here as they are in the US or Canada.

Quote:
Originally Posted by crunchy_mommy View Post

Do you have health insurance? Can you push them to cover part of the costs of therapy?
Are there any therapeutic preschools where you are? That might be just the solution, if something like that exists there, because he could get therapy while at school/daycare. I don't really know anything about resources outside the U.S. -- does the school system support special needs? If so, can you get him into the system early? Is there something equivalent to Head Start?
Yes we have great health insurance. It just does not budge on things like this or mental health issues. That's just the way it is in this part of the world. No therapeutic preschools either. As for the school system- as expats we must send our kids to private international schools and they do not have the same support for special needs as they do in our home country (Canada)- they do have some though. This is one of the reasons my son's therapists say it's essential we get him ready to be "mainstreamed", starting now. They think DS will definitely be able to handle the rigors of a mainstream school program academically but all other aspects he will need prep for. This is one of the reasons they strongly recommend we start him in nursery school.
 
 It's had to say if it's worth the money or not, but I feel like something is better than nothing, and I'd rather go further into debt & at least say we did our best, than tell him someday that I just didn't think getting him help was worth the cost. Therapy is covered by our insurance but we still have copays and it's adding up fast seeing as we couldn't make ends meet even without therapy!
Yes, I completely know what you mean. But I don't really feel like I'm saying that getting DS help isn't worth the cost- we're just wondering where the best place to put our limited resources are. No matter what, we will be helping DS to the best of our ability. If we found some kind of amazing miracle worker or special needs centre that we could see was helping DS tremendously we'd be happy to sign away our last cent. 
Have you talked to the therapists about your concerns? Have they shown you a treatment plan, and what their goals are? This alone might help you feel better about it (or give you the space to clarify or push them on certain things). You can also ask them to design a home program for you. If you can implement part of the therapy at home yourself, you might be able to cut back on seeing the specialists as often.
My husband and I are still in the discussing and putting together our concerns so that we can present them in a comprehensive way to the therapists. We've also agreed to give them a reasonable amount of time as DS just started in September. After DS's assessment they did show us a treatment plan but did not specify actual GOALS- this is something I would like to see. Thank you for bringing this to my attention. I am definitely putting together a home program and I have asked them for some input on this so far and they've been somewhat helpful in recommending resources and giving me feedback on ideas etc. 

 

Quote:
Originally Posted by Linda on the move View Post

What are your preschool options like?

We are looking into them. I'm going to guess that we won't find anything amazing or perfect or perfectly suited to DS and his special needs, but we'll probably find a place that is safe, clean, and with a supportive staff that is willing to work with us.

My thought is that having other people trying to engage with your son is the important part. Although you can do similar things to ABA or speech therapy, you cannot be someone other than mother. Sometimes, being better at reading him isn't an advantage -- it turns into a crutch.

YES! We have been discussing this point as well. My dh was saying that ds's speech therapist uses all kinds of expressions that we don't use and ds isn't used to so she is not seeing that he CAN answer the questions or whatever and that she can't get down to his true issues because of things like this. But of course ds will need to learn to interact with and understand people who don't talk just like mummy and daddy and who don't understand his references to things that we know in our household...YES. I get this. I just don't know if it's worth it to pay a therapist for this experience- especially if the therapist isn't addressing the issues he has with speech because of these barriers. Wouldn't daycare be just as useful? This (not really actual "socialization" per se) is one of the main reasons we want to put DS in preschool- to put him out there, have him interact with other people and children. We live a pretty isolated life and to be honest we don't have many social opportunities and DS may be suffering because of it- I think it's possible he may really blossom in a social environment and coupled with the work we can do at home, maybe it could be just what he needs? Going to preschool would provide more opportunity for and many different types of interactions than even that he gets with his 2 therapists, wouldn't it?

 

We moved to get my DD into a school that was better suited for her, and we are happy with that decision. Getting into the right school has been remarkable for her. But that doesn't mean that the preschool that you have available is the right school for your son. I recommend really looking into the options you have an how you think they might work for your son. Visit them with him.

This is a tough issue. I really doubt we'll find the perfect school. I don't really know exactly what to look for even... this will take a lot of thought. We've never even had to choose childcare for DS other than family.

 

If I could go back in time, I would have hired people, like baby sitters, to just play with my DD or make art or what ever. I tended to see her challenges in terms of specific skills that she needed to extra time and help to develop, but ultimately, it is her difficulty in connecting to people out side out immediate family that is that most challenging for her. 

I think we really need to consider this especially now that DS is older and is getting better and better at communicating. We have never had a babysitter outside of family (and our family lives on a different continent!) . DS connects wonderfully with me, DH and his grandmother who we are lucky to have visit very often but that's it. I think he has the ability he just needs more practice. Lots more practice and I think sometimes he lacks the motivation to connect with others- he just doesn't feel the NEED to. If he were in a preschool he would have to make his wants and needs known to other people and to attempt to understand others too. 

 

(BTW, my DD is 16 and has autism and an IQ in the gifted range)
 

 

Quote:
Originally Posted by Fay View Post

  2 hours of ABA per week does not help anyway.  

This is what I'm thinking too.

Read Engaging Autism and Play to Talk for ideas to get started.  

 

I have read Engaging Autism- it's great and it is what has led me to seek other resources on Floortime and to start implementing a program at home. I will definitely look for Play to Talk! 

Thanks for all the thoughts and suggestions. I appreciate it. Lots to think about. 

If anyone has anything to add, go for it! I am deeply ruminating now on so many things you all have brought to me here. Thank you.

smile.gif


Edited by expat-mama - 11/14/12 at 2:58pm
post #8 of 14

You have received so many excellent answers already, and here are my thoughts/experiences. We have never had to pay the full amount of therapies out of pocket, but even our co-pays have been limiting to what we could do for DS2 (adopted, fragile X, autism and ADHD). I took the approach that I wanted to be mom - the one he comes to for hugs, kisses, nourishment - physical and emotional. I didn't want to be the one making him sit at the table and work - which is the best method for getting him to engage. So we went the therapist route as much as we could/can afford.

 

Before he was old enough for pre-school we were very active socially outside of therapy hours - having an older son helped. Most of DS1's friends have siblings around DS2's age so we do lots of playdates with all the kids. DS2's therapists never suggested daycare for socialization, and I wouldn't have agreed if they ever had t a young age.

 

He is now in pre-school 4 mornings a week and I work school hrs, 8-3pm, so he is taken care of by a mixture of DH (on his days off), my mum and a friend. I wouldn't have started working this much when he was any younger than now (4) since I felt like he needed me around to help him make sense of the world. Our initial plan was for me to wait until he is in all day Kindy before going back to work but b/c of all the medical/therapy bills we needed to move that timetable forward. So I am working and leaving him (which is SO hard) because of the bills we've racked up for him!

post #9 of 14

While I agree that of course a child will have to communicate with others outside of the family, I really doubt that a two year old , particularly one with any developmental/language issues, would have an agenda to deliberately not do so. He's doing the best he can, and if he leans on his Mom, okay. I don't think there is anybody better to read ,and respond to, a child. Therapists and the right therapy can be wonderful and extremely helpful, but it doesn't seem from your original post that you think you've found that.

  Do you live near a college? Might it be possible to entice some future teacher or therapist to play with your son in ways that you feel in your gut are right?

Would him attending a small, loving home daycare give you both what you need? It's totally understandable for you to need some alone time with your new baby and for your son to benefit from being with other kids- a regularly scheduled playtime with a like-minded family until he's old enough ( and can process) preschool?

  And I recommend this book http://www.amazon.com/Miller-Method-Developing-Capacities-Children/dp/1843107228/ref=pd_bbs_sr_1/002-4904421-7194411?ie=UTF8&s=books&qid=1178812580&sr=8-1

post #10 of 14

I didn't have time to read every comment above but I saw you mentioned Floortime and Hanen, which tells me that you have done your homework!! Those are excellent programs and if you understand them and can carry them out then YOU are doing wonderful things for your child! James Mac Donald has another program that is similar (Communicating Partners, I believe). Just because a person is a therapist doesn't mean that they are a good fit for every child or for every diagnosis. If your speech therapist is working on eye contact with a 2 year old, it tells me that she is probably not targeting appropriate goals for him. A pet peeve of mine is therapists who only target talking and do not look at interaction and communication in general. There are prerequisites to talking (just as weight bearing, crawling and cuising furniture are prerequisites to walking) that have to be in place before talking. These include waving, giving/showing toys, pointing, pulling/pushing to communicate, back and forth interactions without words, joint attention...

 

Everyone has to weigh the pros and cons of private, out of pocket expenses. As a mom, I am sure you want it all for your child. My job is to train parents to be the best therapists for their child in early intervention and it sounds like you are doing a great job of that already.  So don't feel that you have to pay a therapist in order for your son to recieve good services at this young age, with a diagnosis of mild autism.

 

Good luck! You are a good mom thumb.gif

post #11 of 14

DS1 is 3.5, ASD, we pay privately for all his therapies, and he attends a preschool two full days a week. His therapies include 2 hours a week of speech, 1 hour of OT, and 1 hour of PT. In school he gets another 1 hour each of OT, SLP, and then special ed. We live in the US but very, very rurally with limited resources. There are no special schools for him, he basically has to be mainstreamed. Because of how services are, we are trying to get him not to need any past age 5. I have pieced together every single inch of everything because the resources are so limited. DS1 is also the 3rd child out of 4, he doesn't get quality time with me sadly. It sucks but it is the reality of our life with several kids with SNs.

 

I am going to jump out on a limb and say what has made the biggest improvement, is his preschool. He is the lowest functioning child there and DS1 is high functioning. he makes eye contact, engages, but is quite quirky with lots of repetitive behaviors and cognitive testing puts him a  full year behind his actual age. He does not pick up social cues, he has to be painstaking taught everything. How to ask for food, water, how to ask someone to play with him, how to ask for help, repeat for every single little thing. Being exposed to other children who are NT, in a small, controlled environment, with teachers who love him, has allowed him to grow further and faster then we had hoped for. We also use sitters just for him that fully engage, on the floor, with him. I would say that has been HUGE for him and us. He doesn't need to speak with me, I know instantly what he wants if he just looks at me. He needs others around him who does not know what he wants if that makes sense. 

 

 

I could reproduce most of his therapies at home. I could. If I had time. I don't, so I pay to send him. He also has significant echolalia, regular techniques during speech therapy do not work with him. He will just sit there and copy them over and over and over, for an hour. The people that work with him have had to branch out of their usual tricks. I also bought some excellent books when I had planned on doing a lot of floor time type of stuff with him myself. It is certainly possible. 

 

 

post #12 of 14
I hope I didn't imply that you think your DS isn't worth the cost! That was just my justification for keeping DS in therapy even though I wasn't sure it was helping & we were (are) going into debt. smile.gif

A couple of follow-up thoughts:

I took my DS to therapy again today, and just when I was thinking it wasn't worth it anymore, they had one of the best sessions yet. I think one thing that helped is that I communicated a lot with the therapist this past week, and she finally got a better grasp on what our key issues are and what's going on with DS. So that was a good reminder to me to keep communicating, more than I'm even comfortable doing, and to stick with it a bit longer before giving up on it. I find when I most want to give up on it is when I have reached a pivotal point -- where I feel like something major is being missed or misunderstood -- and if I can push past that and put the issue into words for the therapist, we make some big strides that convince me it IS worth it.

That being said, not all therapists are created equal, and don't be afraid to let the ST in particular know that, "I really appreciate all the time you've put in with us but I just don't feel like this is the best match for DS, & I'd like a referral to someone else," or just go find someone else on your own.

Another thing I wanted to mention about preschool... My DS doesn't have an official diagnosis yet but he sounds a lot like yours in many ways. One thing I noticed when we started getting together with other kids very regularly, is that he started mimicking their behaviors and language... which hasn't always been for the best. I still think he's benefited from the increased peer socialization, but it was kind of an unexpected outcome to see these new negative behaviors emerge. Just thought I'd throw that out there since your DS seems to have some similar mimicking tendencies (echolalia etc.)
post #13 of 14
Thread Starter 
Quote:

Everyone has to weigh the pros and cons of private, out of pocket expenses. As a mom, I am sure you want it all for your child. My job is to train parents to be the best therapists for their child in early intervention and it sounds like you are doing a great job of that already.  So don't feel that you have to pay a therapist in order for your son to recieve good services at this young age, with a diagnosis of mild autism.

 

Good luck! You are a good mom thumb.gif

Thank you for this. It means a lot to me.

 

 

 

Quote:

Being exposed to other children who are NT, in a small, controlled environment, with teachers who love him, has allowed him to grow further and faster then we had hoped for. We also use sitters just for him that fully engage, on the floor, with him. I would say that has been HUGE for him and us. He doesn't need to speak with me, I know instantly what he wants if he just looks at me. He needs others around him who does not know what he wants if that makes sense. 

 

I could reproduce most of his therapies at home. I could. If I had time. I don't, so I pay to send him. He also has significant echolalia, regular techniques during speech therapy do not work with him. He will just sit there and copy them over and over and over, for an hour. The people that work with him have had to branch out of their usual tricks. I also bought some excellent books when I had planned on doing a lot of floor time type of stuff with him myself. It is certainly possible. 

Thanks for your insight and experience. I think finding a regular sitter that can fully engage with DS would also be a great thing for us too. I'm the same way with my son- I know what he is thinking or what he wants before he can get around to expressing it. I'm trying hard to work past this, but having other regular care givers interact with DS would definitely be beneficial in this respect.

I DO have the time to dedicate to lots of home-based therapy and work with my DS- so more and more I am leaning towards this. I have a professional background in education which I think will give me a good and solid foundation. I'm also able to spend a lot of time reading and training myself- I'm really good at research and execution...but not great with organization, and this is something that worries me about taking this on. 

 

 

 

Quote:
I hope I didn't imply that you think your DS isn't worth the cost! That was just my justification for keeping DS in therapy even though I wasn't sure it was helping & we were (are) going into debt. smile.gif

A couple of follow-up thoughts:

I took my DS to therapy again today, and just when I was thinking it wasn't worth it anymore, they had one of the best sessions yet. I think one thing that helped is that I communicated a lot with the therapist this past week, and she finally got a better grasp on what our key issues are and what's going on with DS. So that was a good reminder to me to keep communicating, more than I'm even comfortable doing, and to stick with it a bit longer before giving up on it. I find when I most want to give up on it is when I have reached a pivotal point -- where I feel like something major is being missed or misunderstood -- and if I can push past that and put the issue into words for the therapist, we make some big strides that convince me it IS worth it.

That being said, not all therapists are created equal, and don't be afraid to let the ST in particular know that, "I really appreciate all the time you've put in with us but I just don't feel like this is the best match for DS, & I'd like a referral to someone else," or just go find someone else on your own.

Another thing I wanted to mention about preschool... My DS doesn't have an official diagnosis yet but he sounds a lot like yours in many ways. One thing I noticed when we started getting together with other kids very regularly, is that he started mimicking their behaviors and language... which hasn't always been for the best. I still think he's benefited from the increased peer socialization, but it was kind of an unexpected outcome to see these new negative behaviors emerge. Just thought I'd throw that out there since your DS seems to have some similar mimicking tendencies (echolalia etc.)

 

No, crunchy, I think I understood what you were saying and your good intentions! No worries here.

 

We have pretty much decided to dump our ST. When I asked her for a more formal outline or learning plan for DS that is specific to his needs rather than the generalizations and recommendations we have been provided with, she was very resistant saying that they issue their individual learning plans in September and that they re-evaluate them quarterly. My son was assessed in September and started therapy in October- so he doesn't get an individual learning plan??? So she can't account for what she is doing with him and why it's best for him until next year or something? I told her fine, if that's the centre's protocol than I would accept something less formal than an "individual learning plan" and I'd just like her to put together something "informally" that can inform us of the program she has assembled for my son, goals and outcomes for him etc. because SURELY she must have that if she is practicing effectively with my son. demon.gif But even if she comes up with something, we are pulling DS out. As an educator and former teacher-trainer this set off warning bells for me- if she isn't ready and willing to explain and defend what she is supposedly doing, if she can't even present an outline then she is running some kind of mickey mouse show. To be an effective teacher (or therapist!) takes preparation, if you are not prepared you are winging it and not doing your job. 

 

Sigh. The ABA sessions are useless too, so may as well pull out of those too.

 

It's just so hard here where standards and practices are so different from in North America. DS's therapists are western and western-educated, but they work here and have adapted and adjusted to the system here. Parents here tend not to be as informed as they are at home and are far more trusting in things like the medical or educational establishment. And these are all private for-PROFIT organizations and individuals that we're dealing with for this stuff- very different than it would be in Canada. For the time being, my family is based here and up until now it has been great for us (mostly economically) but if I can't provide what DS needs in terms of therapy and education and if he isn't able to be mainstreamed for school in a few years, we'll definitely return home.

 

Thanks for all the input on this. It has helped me in piecing this together for myself as well as finding out what I need to from DS's "therapists".

 

I'm growing more confident that I can help DS at home. I'm devouring lots of info about DIR/Floortime and related approaches and starting to collect resources for speech and language work- for this I'm mostly looking at Hanen programs (More than Words and Talkability) and the Affect-Based Language Curriculum (more Greenspan). 

 

It's hard doing this basically alone- I have no community here. DH is great to bounce ideas off of- he is also an educator and I have access to journals and a great library because he works at a university. But I could use some other support.

 

I know I'll be frequenting this board and if there are any other moms out there doing some or all of their LO's therapy at home, I'll be happy to talk ideas and strategies and just support each other.

post #14 of 14
Quote:
Originally Posted by aspeechthx View Post

I didn't have time to read every comment above but I saw you mentioned Floortime and Hanen, which tells me that you have done your homework!! Those are excellent programs and if you understand them and can carry them out then YOU are doing wonderful things for your child! James Mac Donald has another program that is similar (Communicating Partners, I believe). Just because a person is a therapist doesn't mean that they are a good fit for every child or for every diagnosis. If your speech therapist is working on eye contact with a 2 year old, it tells me that she is probably not targeting appropriate goals for him. A pet peeve of mine is therapists who only target talking and do not look at interaction and communication in general. There are prerequisites to talking (just as weight bearing, crawling and cuising furniture are prerequisites to walking) that have to be in place before talking. These include waving, giving/showing toys, pointing, pulling/pushing to communicate, back and forth interactions without words, joint attention...

Everyone has to weigh the pros and cons of private, out of pocket expenses. As a mom, I am sure you want it all for your child. My job is to train parents to be the best therapists for their child in early intervention and it sounds like you are doing a great job of that already.  So don't feel that you have to pay a therapist in order for your son to recieve good services at this young age, with a diagnosis of mild autism.

I couldn't agree with this more!

I'll also add our experiences:
We currently pay for 2 hours a week of ST and our DS attends a cooperative preschool with typical kids (where he is def the lowest functioning kid).

Our DS was given almost the exact same informal dx at 2.5 (autism-like traits but not clearly on the spectrum). I was terrified by the experts who pushed for exactly the same things as your experts are. They wanted ABA (as much as we were willing) and a special ed preschool. After research, I completely refused the ABA. My research on ABA convinced me that, unless done in a naturalistic, and play-based way, can be counter productive for some kids. Of course, for some kids it can work, but for kids like my child, it would have been a total disaster. Anyone who says that a child has to sit still and make eye contact to learn language or any other skill is ONLY talking about kids fairly severely on the spectrum and has no clear idea how the vast majority of human learning takes place! My background is in neuro-anthropology and one of the things I study is how the human brain learns. I will say that some people do something they call ABA but that isn't what I consider "traditional" ABA. This new ABA is much more naturalistic and can be totally fine but I would still be cautious. I very much agree with Dr. Jim MacDonald in that the foundation of communication and learning is back and forth interaction learned in functional ways which is why I am always cautious about purely behavioral approaches.

Instead of ABA, I have focused very heavily on floortimey, play based approaches. Our insurance won't cover a private ST and we went through almost 6 different therapists until we found some one who works really well with our DS. Now it is making a huge difference! I would watch and see how your DS seems to react to any given therapist. In terms of therapy, no one can know what will work for any given child and so I feel like it is a little game of trial and error (with types of therapy as well as specific therapists). If it seems ot help, keep doing it! If not, look elsewhere.

In terms of the preschool, much like you, I was worried that our DS was too socially isolated and thought time in a preschool would help. DS was in that school for almost 4 months and I think it is literally the WORST thing we have ever done for our son. There was a variety of functional levels at the school but most of the kids were very non-social. After his time there with kids who never responded to his many, many attempts to interact, I believe he learned to think that kids just don't interact. It absolutely hurts my heart, but I watched him try again and again to engage the other kids in play and, after a while he gave up.

Which is why I think, when kids are so young, it is really, really bad to put them in an environment that assuming any specific diagnosis. The school we put DS in was very geared toward kids on the spectrum and for some of them I think it really was the right place. However, I also believe that, for the vast majority of kids, an environment where they can be around typical, natural communication between peers and with adults is essential.

The preschool we are in now has been amazing! It is a coop so I work there once a week and can be there as often as I like if I feel like DS needs support. The teacher is certified in special needs (even though it is a typical preschool). My DS loves it and is learning more there than any other place. So in our experience preschool has been a huge help, but it had to be the right one. Anything less than great is NOT somewhere I would send him. (We ended up looking at almost 9 preschool until we found this one).

So my advice there would be to definitely go see any school you are considering. Ask about their approach. Ask how they facilitate and encourage social growth and interaction. Sit in on a class and see how the kids interact. If they talk about long, required circle time and sitting at a table for extended lengths of time, I would look elsewhere.

Part of our journey has been getting a better picture of what's going on with DS which has made a huge difference for us. Which is why my ultimate advice would be to go see a developmental pediatrician and get a good evaluation. It was crazy expensive but worth every penny because we found out that our DS is not on the spectrum at all. Instead he has a severe language disorder - which can look very much like ASD in some ways (especially low eye contact and not responding to someone talking to them). I'm not in any way saying that this is what's going on with your DS. But I do believe that kids in the grey "may be on the spectrum, may not be" are often pushed into treatments geared specifically for kids on the spectrum which I also believe can be counterproductive.

For example, we now know that our DS has auditory processing problems and so, until recently, language sounded like white noise to him. As a direct result, his eye contact was poor. When you can't understand what's being said, why would you look at someone's face? One of therapists we worked with was incredibly determined to "work" on eye contact. She held things by her eye, even turned his head sometimes or demanded full eye contact before continuing with a game. Now we understand that the real, core issue is receptive language and working on eye contact before his receptive language improved would have been frustrating and probably really annoying for DS. Now that we know the real issue, we have a road map for the issues we really need to spend our time focusing on.

Trust your gut, you know your DS better than any expert!
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