Jump to content

Menu

Newly Diagnosed DS, Still Trying to Figure Things Out


Shahrazad
 Share

Recommended Posts

I just had a meeting Monday to go over the results of my son's (5) neuropsych eval and they've diagnosed him with Autism (high-functioning). He has some speech and developmental delays as part of the package (his receptive and expressive language put him at or below the 1st percentile and his sentence structure, word structure, and expressive vocabulary was estimated to be equivalent to less than 3 years old while his core language score was in the 0.1 percentile). They recommended formal testing in the future to rule out the possibility of intellectual impairment because of his speech and language delays. They recommended increasing his speech therapy to 90 minutes per week (he has been dong 45 minutes a week since July) and starting 30-40 hours per week of ABA therapy. They also suggested that I might want to switch his SLP to one who specializes in Autism and is ABA trained. His current SLP takes a more naturalistic, child-led approach and doesn't seem to be a huge fan of the rigidity (and from the impression I got, the focus on what the child 'can't do'/their weaknesses) of ABA. I really like her on a personal level and my son seems to like her a lot too so I'm torn about whether or not to switch. I'm also kind of having trouble imagining how 30-40 hours per week of ABA would look, that is 6-8 hours a day and I'm unsure of how you can do anything else during the day with that. I'm glad to finally have some answers but I'm also extremely overwhelmed and trying to move quickly to get him the interventions he needs now that I've come out of my 2.5 year denial stint during which he could have been receiving therapies had I just woken up.

On a smaller note, I'm reading through the 100 Day Toolkit they gave me and it gives the suggestion of getting a medical alert bracelet for the child that says they have Autism so if there was some sort of situation where the child wandered off or got separated, authorities would know that he has Autism and also account for the inability to, for example, give his information or our information or answer their questions. My son hasn't ever been a runner (my 2 year old is the one we worry about) and I've never had an issue like this with him but would it be worth it as a 'better safe than sorry' measure?

 

ETA: I'm all set to start nursing school in January but now with his needs, the amount of therapy needed, and homeschooling, we're trying to figure out if that is even going to be possible anymore.

Link to comment
Share on other sites

I'm so sorry you haven't gotten any replies!  I imagine you're in quite a bit of shock trying to think through all this.  

 

If I could suggest on the speech, please look into PROMPT and determine whether there's any praxis involved.  About 1/2 the time there is with autism and the severe delays and 1/2 the time there isn't.  It's worth looking into.  www.promptinstitute.org

 

 

Link to comment
Share on other sites

I'm dealing with a much older child, so no help with regard to therapies.  All my kids have bracelets, some just for ID, one for allergies and ASD.  In addition to not being able to convey information, my ASD may react "abnormally" in an emergency situation and I want first responders to know why. KWIM? 

 

For initial tips, ideas of what you are dealing with, I would recommend browsing through the older posts on the SN board.  :grouphug:

Link to comment
Share on other sites

My ASD kiddo has a different set of issues but a late diagnosis as well. I wanted to send a  :grouphug: even though I have little to offer in practical advice.

 

Okay, so we have not done ABA or a lot of rigid therapy. Lecka posted a bunch of information and context regarding ABA in reply to someone. We didn't know my son had ASD until he was about 9, so we did things with a more child-led approach (translation: the child dragged us to and fro, drove us to distraction, etc., but we did eventually with much frustration develop effective ways to deal with him and many, many poor ways to adapt as well). Unfortunately, our child-led (because he wouldn't BE led) approach also exhausted us, and to be honest, we don't have as much energy left now to go back in and spackle over the holes in the training. I am not sure how open we would have been to ABA or other therapies--it's hard to say in hindsight. Our psychologist is pretty surprised at how well we coped, but says our level of burnout is directly related to the energy we put in figuring it out ourselves. We did need some kind of help though, and you probably do too. Whether the professional help you need is ABA or another kind of therapy, I can't tell you, but I would be cautious about a child-led approach exclusively. To me, that's basically saying to get yourself a diploma from the School of Hard Knocks. I would find out just what she means by child-led. A focus on strengths is a good thing though, so you don't want to throw out the good with the possible bad. We have some friends whose daughter is HFA and probably more like your son. They have delighted in their daughter and done tons of therapy. So, there is a middle ground. They let her be who she is, and they accept that, but they pursue therapy as well. We've only met them in the last year or so, and she's a teenager, so I am not sure what all they did, but they started with early intervention and have kept rolling.

 

OhElizabeth knows what she's talking about with PROMPT. If you need it, it's important to look into this. 

 

Nursing school...tough choice there. I am sorry you have to face that choice. Truly. Depending on what kind of services you receive, and how you deal with stress, time management, etc., it could be fine (though you may want to consider a later start date until you have some idea of what to expect). I do know people that rise to the challenge with more structure, more support, more focus, and if that is how you are, it might be good--ASD kiddos like structure! It probably depends a great deal on what outside help or family help you have, and whether or not you have much flexibility in your school schedule. 

 

 

Link to comment
Share on other sites

I just had a meeting Monday to go over the results of my son's (5) neuropsych eval and they've diagnosed him with Autism (high-functioning). He has some speech and developmental delays as part of the package (his receptive and expressive language put him at or below the 1st percentile and his sentence structure, word structure, and expressive vocabulary was estimated to be equivalent to less than 3 years old while his core language score was in the 0.1 percentile). They recommended formal testing in the future to rule out the possibility of intellectual impairment because of his speech and language delays. They recommended increasing his speech therapy to 90 minutes per week (he has been dong 45 minutes a week since July) and starting 30-40 hours per week of ABA therapy. They also suggested that I might want to switch his SLP to one who specializes in Autism and is ABA trained. His current SLP takes a more naturalistic, child-led approach and doesn't seem to be a huge fan of the rigidity (and from the impression I got, the focus on what the child 'can't do'/their weaknesses) of ABA. I really like her on a personal level and my son seems to like her a lot too so I'm torn about whether or not to switch. I'm also kind of having trouble imagining how 30-40 hours per week of ABA would look, that is 6-8 hours a day and I'm unsure of how you can do anything else during the day with that. I'm glad to finally have some answers but I'm also extremely overwhelmed and trying to move quickly to get him the interventions he needs now that I've come out of my 2.5 year denial stint during which he could have been receiving therapies had I just woken up.

 

On a smaller note, I'm reading through the 100 Day Toolkit they gave me and it gives the suggestion of getting a medical alert bracelet for the child that says they have Autism so if there was some sort of situation where the child wandered off or got separated, authorities would know that he has Autism and also account for the inability to, for example, give his information or our information or answer their questions. My son hasn't ever been a runner (my 2 year old is the one we worry about) and I've never had an issue like this with him but would it be worth it as a 'better safe than sorry' measure?

 

ETA: I'm all set to start nursing school in January but now with his needs, the amount of therapy needed, and homeschooling, we're trying to figure out if that is even going to be possible anymore.

I have no suggestions, OP, but I very much wanted to send hugs.   :grouphug:  :grouphug:  :grouphug:

Link to comment
Share on other sites

 

OhElizabeth knows what she's talking about with PROMPT. If you need it, it's important to look into this. 

 

Nursing school...tough choice there. I am sorry you have to face that choice. Truly. Depending on what kind of services you receive, and how you deal with stress, time management, etc., it could be fine (though you may want to consider a later start date until you have some idea of what to expect). I do know people that rise to the challenge with more structure, more support, more focus, and if that is how you are, it might be good--ASD kiddos like structure! It probably depends a great deal on what outside help or family help you have, and whether or not you have much flexibility in your school schedule. 

Yes, my boy is apraxia and gets ST from a SLP who is a specialist and who only treats apraxia and feeding disorders.  *Most* of the kids in the practice have severe autism, cerebral palsy, or Downs.  Apraxia is the elephant in the room with these kids, and you don't want it to get missed if it's part of the problem.  

 

Now to Kbutton's comment on structure.  That's why we're getting evals and I'm watching the thought process of this thread with great interest.  See with ADHD we say structure, but it *can* be child-led without a problem.  It's a little more questionable with ds.  He's very, very self-determinate, and, while I'm TOTALLY WITH the value of working with it, it gets really tricky when you realize you should have been working on positive ways to be flexible, transition, etc.  Like tonight he spent the whole time during our movie saying the other movie he had wanted would have been better.  He'd laugh at the scene (kids chasing dog in circle, very funny) and then say the Scrooge movie would have been better.  And as soon as it was over he asked if we could watch Scrooge.  

 

So I'm open to learning new tricks and want the right words to make sure we're doing this right.  Turns out I have arthritis brewing.  I don't need any more Hard Knocks.

Link to comment
Share on other sites

Yes, my boy is apraxia and gets ST from a SLP who is a specialist and who only treats apraxia and feeding disorders.  *Most* of the kids in the practice have severe autism, cerebral palsy, or Downs.  Apraxia is the elephant in the room with these kids, and you don't want it to get missed if it's part of the problem.  

 

Now to Kbutton's comment on structure.  That's why we're getting evals and I'm watching the thought process of this thread with great interest.  See with ADHD we say structure, but it *can* be child-led without a problem.  It's a little more questionable with ds.  He's very, very self-determinate, and, while I'm TOTALLY WITH the value of working with it, it gets really tricky when you realize you should have been working on positive ways to be flexible, transition, etc.  Like tonight he spent the whole time during our movie saying the other movie he had wanted would have been better.  He'd laugh at the scene (kids chasing dog in circle, very funny) and then say the Scrooge movie would have been better.  And as soon as it was over he asked if we could watch Scrooge.  

 

So I'm open to learning new tricks and want the right words to make sure we're doing this right.  Turns out I have arthritis brewing.  I don't need any more Hard Knocks.

 

I'm going to have to borrow this example; it's a perfect example of structure with ASD kiddos being a double-edged sword. I keep having this conversation with others who have successfully created structure with their SN kids, and I'm just so used to this that I can no longer describe it but to say, "structure is good until it becomes a weapon with which to bludgeon the mom to death." It's SO hard to get other people to understand my love/hate relationship with structure when they just see the positives.

 

It's not definitive for ASD--my other kiddo who is not ASD sometimes gets this way if he's emotionally stuck. Everyone does this from time to time, but they usually internalize it. It can be about a high need for control. But yes, my ASD kiddo takes it to a whole new level (and MIL too, though she has no formal diagnosis or anything).

Link to comment
Share on other sites

I'm going to have to borrow this example; it's a perfect example of structure with ASD kiddos being a double-edged sword. I keep having this conversation with others who have successfully created structure with their SN kids, and I'm just so used to this that I can no longer describe it but to say, "structure is good until it becomes a weapon with which to bludgeon the mom to death." It's SO hard to get other people to understand my love/hate relationship with structure when they just see the positives.

 

It's not definitive for ASD--my other kiddo who is not ASD sometimes gets this way if he's emotionally stuck. Everyone does this from time to time, but they usually internalize it. It can be about a high need for control. But yes, my ASD kiddo takes it to a whole new level (and MIL too, though she has no formal diagnosis or anything).

That's funny, I think I meant sort of the inverse, lol.  Actually, I don't know, sigh.  I think I'm saying the danger with him of going his way is you only get his way.  It would take an insane amount of structure to keep up with him.  He'll roll with it, yes, and respond to it well, yes.  It's more can the Mortal Mother DO it.

Link to comment
Share on other sites

I will reply further later on today, but I can tell you what 20 hrs/week ABA looks like for our family. Be aware that the 20 hours is not 20 hours' worth of therapy. That total includes time spent writing reports and the hourlong team meeting every other week with me, the 3 therapists, the case manager, and the supervising board certified analyst (BCBA). DD receives therapy from 2:30-6 P.M. M-F. Some of those sessions have the case manager or the BCBA observing so when one of those ladies are at the session, it counts twice against the approved number of hours. For example a session might have 3.5 hours of the junior therapist and then 2 hours of the case manager or 1 hour of the BCBA.

Link to comment
Share on other sites

That's funny, I think I meant sort of the inverse, lol.  Actually, I don't know, sigh.  I think I'm saying the danger with him of going his way is you only get his way.  It would take an insane amount of structure to keep up with him.  He'll roll with it, yes, and respond to it well, yes.  It's more can the Mortal Mother DO it.

 

Yeah, I'm reading this differently. Suffice it to say that mine can flip structure around to tie up the mommy in a prison of another kind! 

Link to comment
Share on other sites

If I take my son to the zoo and follow through with his behavior plan and encourage him to talk and I am excited when he points at things blah blah blah they can say that counts as ABA.  It does not count as "doing a program at the table."  But -- I have an impression that the "doing a program at the table" should be no more than 2-3 hours a day for a younger child.  

 

I think if there is a behavior plan, the speech therapist needs to follow it.  If she does -- great.  I think your son's speech therapist needs to be getting progress.  If she does -- that is great.  

 

That is from my personal experience between ABA and "not doing the ABA thing."  Either they have not been able to re-direct or deal with his behaviors (such that nothing is accomplished and it is unpleasant for my son as well as the therapist -- like, think of any situation where a child is kind-of unhappy and not doing well and it is just a mismatch between the child and their situation, for whatever reason).  Or -- they just do not get the progress.  

 

If you start ABA and after a month or two or three, you don't go "whoa, this is much better," then I think ----- stick with the one you have.  If you see that ABA is leading to more progress -- you can ask the speech therapist to add in some things, or switch.  

 

I don't think you can be expected to know until you try -- I think that is life sometimes. 

 

There are two books I have found really helpful. One is The Verbal Behavior Approach.  This is the best book to me -- there is just a lot in there pertinent to my son and it is about ABA.  I have also read An Early Start for Your Child With Autism, it is in my local library.  It has got some good "first 100 days" kind of information, too.  

 

Where I am -- when they say the numbers of hours for ABA, this is what they really want.  They want parents/caregivers to all follow through with the behavior plan at all times.  They want all parents/caregivers to encourage language and respond to attempts at language or communication at all times.  It is kind-of not too big of a deal.  Where it is a big deal -- someone has had their child in just daycare for half the day, and the daycare people are not doing too much with that child.  That is the kind of thing they don't want.  So what they mean is -- we want the child to be in a good setting all the hours they are not with a parent -- in case maybe they are going to be in daycare and be one of x number of kids and not get the attention they need.  

 

It is not 30-40 hours a week of sitting at a table doing drills.  That part of ABA is often called DTT for direct trial teaching.  It is not ALL of ABA.  It is what is often associated as "this is what ABA is" but it is just a part.  There is also (and this has different names, too) NET which is Natural Environment Training -- which I don't totally get what is so special about it specifically (like I don't know exactly) but it is like -- playing games, going places, doing stuff, in the natural environment -- which might be the park, the zoo, the grocery store and practicing/encouraging the skills worked on in DTT in real life.  

 

The point of ABA is kind of -- guess what, for some kids, they aren't picking it up by natural child-led exposure approaches.  If they were -- that is great.  But if kids are not picking it up, they may need DTT to help them get the skills.  Once kids pick up some skills, they become more able to learn from the environment, and may need less DTT, or the DTT may turn into tutoring for academic skills.

 

But if a child does not have joint attention, imitation, receptive language ----- it is difficult to learn from the environment without these skills (this is the theory, kind-of).  So work on these skills in DTT and also practice them in the real world.  Then these skills get higher -- then the child is having joint attention, imitation, and language skills and is able to learn from the environment.  That is the goal.  

 

So if a child already can learn from the environment -- that is great.  If they don't have the (in this theoretical model) foundational skills needed to learn from the environment, then they need ABA.  

 

That is like -- a summary from a book, explaining why some kids will need ABA and not benefit from naturalistic.  But it is not that there is nothing naturalistic about ABA.  It is just that there may also need to be direct teaching/drills.  

 

It is hard for me to find drills to be so horrible, when they are what have led to my son making progress.  But -- if he did not need it and was just doing it to do it?  No, I would think naturalistic would be better.  Even with the drills, they can do things to make them more interesting and fun, use favorite cartoon characters, be fun, be animated, etc.  

Link to comment
Share on other sites

  • 2 months later...

I am so sorry I didn't respond to this after all of you took the time to write me such great responses. I got a bit overwhelmed and kept getting held up when I came back but I did read your posts at the time and really appreciated all the information you gave me.

We still haven't started ABA just because I'm working on getting the funding all set up for it/to get the school district to pay for it and this has taken longer than expected. However, the place that did the eval did not do an OT eval and I felt he needed OT so I asked my son's pediatrician and he wrote a referral for him. The place I started taking him to for OT also has ST and they have a sister organization that does ABA (with a more mellow twist) as well. I really love this place and his first SLP suggested that he start getting ST there and have everything in one place (her son used to get OT and ST there as well). Although I really liked her and was a bit hesitant to switch, this seemed like a good decision and I also knew that they were really geared toward ASD children as well. I have no regrets because my son is thriving with his therapies and in just a couple months, I've noticed enormous improvement. My husband also took him there several times when I had exams that conflicted with the therapy timing and he could not say enough good things about the therapists. I do know they were evaluating him for Apraxia but I don't believe they saw signs of that.

 

 

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...