what to do now???
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what to do now???
| Sat, 07-30-2005 - 12:18pm |
Okay so we FINALLY have a diagnosis it was reccomended he go to 6-9 mo. therapy we as a family attend 3-6 sessions and a special afterschool/camp program was also recomended for social skills/ coping skills. Well, his therapist told us he's leaving and although he says we can continue with the person taking his place that he's trying to close as many cases as possible and we coud take a break and see how things go. NOW, he has been seeing him for 14 or so months with zero improvement but this was all before the diagnosis. What I notice the most improvement is adjustments I make as far as in my expectations ect..We have good weeks and bad weeks therapy so far has not changed that. The social group although I think is a great idea is a bit out of my range for now as far as driving it would take about 4 hours of my day. I may still do it I'm looking into it. Another consideration is he wants to get involved with the youth group at church. I think this would be wonderful for him although during the bible school this summer he had a little difficulty the first few days. Nothing noticable to anyone else but when I picked him up he would act strangly for the first hour or so afterward. Socially he does need help but his social deficits aren't extremely obvious. I'm just torn part of me is so sick of going to therapy there has been no change I mean none whatsoever since we started, I'm still considering meds as a possibilty to help control irritablity/explosiveness but it's been a good week so I'm leaning against it right now. Am I wrong to think a regular youth group could help him how neccessary is it for the group to be for kids with issues? I know we all have our own opinions but I'd really like some input if anyone has any??? Thanks Amanda

Dear Amanda,
I have only our own experience to go on, with this advice... Malcolm (now 8, PDD-NOS) has plenty of language and charm, and has been in therapies sice he was 3 for PDD-NOS symptoms of theory of mind, anxiety and difficulties with expressive and receptive language. For severaL years now, he has been studying social skills in one-on-one therapy and now small groups therapy, also RDI. He also has now been in psychotherapy with an ASD specialist for over a year and a half, 2 xs a week. We imagine that he will continue all these therapies for some years to come! Malcolm holds conversations now, maintains many friendships (with some help), plays imaginatively and cooperatively in both structured and free-form play with other kids, and although still having some difficulty with sudden unforseen changes and misunderstanding teasing, etc., is beginning to self-regulate in social situations without constant support!!!
You have only recently received a dx that must be somewhere on the spectrum. Children on the spectrum have difficulty with social issues because they lack basic innate skills that will NOT be picked up just by exposure. Just being a part of a younth group is probably not going to answer your son's needs. This is not to say he would get nothing from being in such a group, but the professional assistance ALONG WITH being part of the youth group, were the group open and inclusive and non-judgemental and accomodating, might be a better opportunity for him to start figuring these problems out.
The issue is the lack of understanding of what is required socially and therefore the frustration and confusion that arises. What can help him understand himself and others, and to participate in social settings and enjoy himself? If the therapy you are talking about is talk therapy or psychotherapy, are these therapists well versed in working with the particular difficulties of children on the spectrum and their families? 14 months is hardly a long time for psychotherapy and I think it is sad that the first therapist is leaving, because the time needed to build the therapeutic relationship in order for results to show up is, well, no one amount for any one child, but not necessarily that much less than 14 months. However, your son may just now be ready to start using the therapy for his own gains...
And you only just received the dx. The results you are seeing coming from changing your expectations are key, by the way, and would also be true in working with a therapist who has a background in working with spectrum kids. If my husband and I were making this decision, we would opt for the therapy (if qualified) AND the social skills class AND the youth group, to see if we could get as much help for him along with his participation in a group where he is actually interested. But the reason we would choose to do all this is because we have had so much success with lots of organized, structured help for our son in his learning of socialization. This has been and is a long-term project, perhaps involving us for the rest of his childhood and into adulthood. We are working towards him being an independentand fulfilled, happy adult, and many spectrum children do not become so, even with alot of help. Socialization still does not come easily to Malcolm, but with help he is slowly building his coping and social skills, lowering his own anxiety and growing into a charming young man who is a pleasure to know and raise.
Again, this is my opinion based on our results. Others here may advise differently. Too bad the social skills class would be so draining on you travel-wises, might there be alternatives such as ride-sharing or swapping with other parents, etc.?
Anyways, good luck to you on these decisions. It is so hard, as we must base our decisions on so little clear evidence and so much guesswork, really....
yours,
Sara
ilovemalcolm
Amanda,
I think anything like a youth group, just for exposure to other kids, is great, as long as your kid is ready for that. Mine isn't yet. He's 5 yrs old with PDD-NOS and still can't play well with just one other child. It sounds like your son may be ready however, especially since he is mainstreamed at school and is getting a later diagnosis.
Our church has a special needs program, which is fairly developed now, and one thing they do is make up Christian Ed IEP's for the educational staff to go by. It might be a good idea to put something together in writing for the youth group leader that is like this. You don't want to stigmatize your son by announcing to the whole group that he has a diagnosis, but giving the youth leaders some info would be helpful. Then, they could be understanding and deal with your son in a productive manner if he has a breakdown, perseverates over something, etc. (whatever his issues are). I would just write something informal up for them to tell them how you handle such situations at home. You can also include things you are working on and how you are working on them (controlling his temper, compromising with others, social problem solving, expressing self verbally in emotional situations, etc.). My feeling is that churches should be working on these sorts of things anyway, so the leaders ought to be happy that you are giving them some focus. Probably, there are a few other kids in the group who need to work on the same things, if your son is as high functioning as I think he is.
Good luck. We have found church to be a good social experience for Cassian, even though he is not ready for unfacilitated peer interactions yet.
Suzi
My general rule of thumb is where are you going to get the most bang for your buck. And not only money but time. Where is the best place to invest your resources of money, time (yours and his) and effort?
Just because something is called "therapy" doesn't make it the most effective thing for an individual child. You know him best. What his needs are as a child in general and as a child with AS. Knowing he has AS will help you modify his environment to meet his needs. So if the youth group is the most beneficial for him, then I would say do that but with AS in mind. In other words prepare him in advance with social stories, schedule, etc. Depending on his level of need you may want to inform the group leader. You know where his areas of difficulty are and you and he can come up with a plan that will work for you both.
Honestly, if he was seeing a therapist for 14 months without any improvement, I wouldn't really take that therapists recomendations. I would ditch him and look at this as an opportunity for you to start fresh. Make a list of your ds's needs. What goals you have for him over the next year then figure out how to meet those goals.
Renee
I forgot to say, I agree with Rennee on the therapist issue. I would get a new therapist, who especially treats kids with ASD's, and also look for one who relates well to your son. Therapy is a very personal relationship, and often a therapist just does not click well with your child because of his/her personality not mixing well with your child's. I am a psychologist, but I worked with very young kids (infant-preschool) in early intervention. I especially liked working with some kids more than others, and I know I helped these children more. The more active, engaging, delayed kids were more fun for me, than the more passive ones. I had fun with several who had Down's. Ironically, kids with PDD's were hardest for me, and now I have one of my own. I think I've improved my techniques, though;)
Therapy is also better, if you go in with a few specific things you want to work on. This idea dovetails well with making up a list for the youth leaders in your church. The same list of issues and concerns for a new therapist would be very beneficial. To find a new therapist, I would suggest asking for a list of names from a few people in the school system (autism program coordinator, special ed director, school psychologist, etc.). Also try the local chapters of the Autism Society or ARC in your area to see if they have a few people they recommend. You may think these societies are only for lower functioning kids, but they are not. Parents of Aspies are often very active and form a sub-chapter with them.
Suzi
Thanks Sara... I think it's sad too, that his therapist is leaving. I feel like we just finally got to the poin that he understands us and where we all are with this.On the other hand I wonder how experienced he is and how we may benefit from someone else. But I have too say that I feel like I'm losing my ally in all of this. The thought of starting over with someone new seems like so much. I'm still not sure the direction we're headed but I will consider your opinion and thank you so much for taking the time to respond!
Amanda
Thanks Suzi, that is really good advice. The decision to announce his diagnosis is a difficult one. I've even been hesitant with family becasue he is on the minor side. he is 11 and has gotten by without it but I find he struggles to keep up and is often misunderstood. Like I said before at the chursh group he did well but after told me of all these struggles.like,"noone told me how to glue it" or "My wind chime is tangled they gave me the tangled one" He just requires a bit more attention and effort. he holds it together but loses it with me over these minor issues. Thanks for your input I'm not quite sure where we're headed but it' feels good to know we are not alone.
Amanda
That makes alot of sense Renee and I totally agree it doesn't have to be just therapy that helps him. In some ways I wonder if going off every week to these appoinments actually makes him feel worse about himself like as thogh there is something wrong with him. I know he needs the help but sometimes I feel like the therapist dug up things making him more upset than anything. I'm pretty much leaning towards staying, seeing how experienced the new one is, perhaps he or she will have a different effect.
Amanda
Well, I don't want to sound like I don't like therapists. My kids see a wonderful play therapist who works on social skills. We do hippotherapy and used to do OT too.
My point is that often I find that we parents put alot of resources into "therapy" because it seems the right thing to do, but the kids really make no progress. Autism is a sticky business. There are so many treatments and therapies out there to put our money into and all expensive.(ABA, Floortime, PRT, Rapid prompting, vitamins, diet, SI, speech, medication, social skills groups, etc) And as parents we feel that we must do everything we can for our kids (rightfully so) but sometimes in doing that we put our resources into things that aren't neccessarily helpful for our individual child. But each child with autism is different and what they will need is different. There is no one right way to do it. So my rule of thumb is to figure out exactly what my kids needs are and what is available that will meet that need best, has a quality person doing it and that is where I put my resources.
So for instance, sometimes taking my kids on a swimming playdate 3 days a week or having sensory equipment at home will be more helpful than SI therapy 1 time a week particularly it the COTA they put me with doesn't get it or doesn't show up(this is what happened). Drama class with a great instructor may be a great alternative for some Aspies rather than a social skills group. But the drama will be no good if the instructor refuses to accept or learn about AS.
Renee
Thats a really great point. My dh seems reluctant to accept the diagnosis although he claims to be amazed by how much it sounds like ds when we read info on AS he has issues of just accepting it. I find the most helpful thing is accepting his differences as a part of who he is rather than trying to change him.
Amanda