Prioritizing therapies and other needs

[macchiatto]

So as a bit of review, my son Leo was Dx'ed with ASD last spring. (He has hypotonia, sensory processing issues and anxiety as part of the picture.) He's been in and out of various therapies since he was 2.5. The devel pedi who Dx'ed him recommended he get back into PT and OT, start counseling for anxiety, and he had just restarted ST (for social skills and feeding issues). I'm also putting him on the waiting list for ABA but it's over 2 years so it'll be a while til we have to worry about fitting that in ...

Now that school is about to start again, I'm trying to figure out how to balance everything, especially for a kid who already struggles with fatigue/low energy. I know I've referred to this before, but how would you go about prioritizing and figuring out his schedule? Ideally he could also use more physical activity to build on what he's doing in PT, and perhaps some sort of club to help with his social skills and making friends. He currently gets no services at school but is in a pull-out G&T program one day a week. I may try to see if I can get him counseling and in a social skills group at school to cut down on the 4 after-school therapies he currently needs.

Anyhow, just looking for guidance on how to balance competing needs without overloading his schedule. I want to make sure he has down time, free play time, and family time as well as going to school and therapies and doing homework for all of those. (And making sure his twin brother gets outlets for his massive amounts of energy as well. Energy levels definitely got distributed unevenly in utero. ) Would his developmental pediatrician be the best person to help us figure all that out, or what advice do you all have on this? 

[miranda]

I was going to post this myself a few weeks ago. In the end, it's a personal choice. There's no one right formula. My son is also really low energy, and has become vocal about not wanting to do any activities after school. I have learned to lower my expectations. He does a STEM club twice a week after school, that's a good activity even though he dislikes it. Scouts is twice a month. Sunday School for an hour on Sundays. And we'll hopefully start swimming or some other low-key YMCA lesson once a week again this fall. I fretted for a bit that I need to sign him up for tutors, private social skills (he gets social skills in the school 1X a week; it isn't great), counseling, handwriting OT, etc. I could, and probably should, do all of them. I try to wack one mole at a time and right now I want to work on swimming since he has stalled on progress and is still doggy-paddling. Once I assess where he is at academically this year I may throw in a Saturday morning tutor if I can find someone worth our while.

I have asked his psychiatrist about this and mentioned that I was considering pulling DS from his in-school social skills; I told her I'd rather set up regular playdates with kids from his classroom, or rely on Scout activities. She agreed these activities sometimes can be better if the in-school opportunity is lame, and she though DS has moved beyond needing rote instruction on social skills and instead needs pragmatic opportunities to practice.

[waverly]

I work on what is the top priority of the moment first. Luckily we don't have tons at one time, but rather various different issues spread out over 7 years. So most have been one at a time things. But for example he needed his tonsils out but he also needed heart surgery, so obviously heart surgery came first. Tonsils ended up being about 10 months later which was a long time but he was on baby aspirin for 6 months after the heart surgery.

Last year priorities were hearing aids and ear infections. IEP and speech were secondary. Speech was great in that it was in the school, so schedule wise it was fine.

I've tried a lot of activities to help his coordination, but never more than once a week. Summer camp helped a lot, and he will have daily PE. We are starting Scouts this year. Sunday school like miranda said will start in September.

I think DS needs PT and OT as well. I will see if the school will do OT in his next IEP. That way in school it won't affect our schedule. If the teacher and OT thinks it is OK we may punt on it as long as he can keep up grade level with writing.

On my to-do list is contacting the Pediatric Orthopedic. I have been trying to analyze DS myself for a long time, and by myself and with the doctors help and others, I have ruled out some things. But I noticed a walking, gait issue and his one leg is super loose in the hip with the knee inward when he bikes. So I am thinking the next step is the Ortho. But right now we are adjusting back to school, so I am tackling that first.

It seems like a lot, but its spread out like I said. And I take little breaks. All fall was a million ENT, Audiology and IEP appointments, so I took a break from doctors (as much as medically possible- there were still illnesses and ear infections) in the spring and summer. Summer was swimming and coordination/ sports.

And then back to tackling physical developmental issues, IEP, speech, PE class and school in the fall, and his FM system and yearly audiology test. 

I don't know if this is the correct way to do this or just for my child, but I think I will prioritize whole body gross motor skills over fine motor skills.  He needs help in both, but if his legs are growing incorrectly I think that is priority.  On the fine motor side, he can tie the first part of a knot for his shoe but not the second part (almost 7), scissoring has improved, writing is messy, but legible so I think the teacher can give us more insight.  If someone was more sensory (DS is a little but not enough to be SPD) then I might focus more on OT.  This is also because there have been times were he has injured himself (minor injuries) due to lack of coordination which I realise all kids do, but caused me to up the coordination part to help prevent injury.  

[auntie]

Aug 17, 2017 14:16:39 GMT -5 macchiatto said:

So as a bit of review, my son Leo was Dx'ed with ASD last spring. (He has hypotonia, sensory processing issues and anxiety as part of the picture.) He's been in and out of various therapies since he was 2.5. The devel pedi who Dx'ed him recommended he get back into PT and OT, start counseling for anxiety, and he had just restarted ST (for social skills and feeding issues). I'm also putting him on the waiting list for ABA but it's over 2 years so it'll be a while til we have to worry about fitting that in ...

Playing devil's advocate here a bit. Feel free to ignore. 

But why ABA? What do you plan to do the ABA for? To teach daily living skills? To fade stigmatizing behaviors? 

Perhaps it's my bias, but it seems a kid who sort of flew beneath that radar until he was 8-ish needs to be taught thinking strategies on how to work through a scenario rather than "trained" in a standard script. 

Now that school is about to start again, I'm trying to figure out how to balance everything, especially for a kid who already struggles with fatigue/low energy. I know I've referred to this before, but how would you go about prioritizing and figuring out his schedule? Ideally he could also use more physical activity to build on what he's doing in PT, and perhaps some sort of club to help with his social skills and making friends. He currently gets no services at school but is in a pull-out G&T program one day a week. I may try to see if I can get him counseling and in a social skills group at school to cut down on the 4 after-school therapies he currently needs.

Balance? It's a tough call. DS's psychologist would say to go balls out now- if he needs all of those therapies, you both suit up in the big person under-garments appropriate to your gender and you deal. You wouldn't try to talk an oncologist out of 5 day a week chemo in search of balance or family time. 

The thing is, you've got less than 10 years in which to oversee a plan to get your son all the skills he needs to transition to the most independent adulthood possible for him. It's probably easier to get those therapies in place now, than it will be when he's older and less inclined to cooperate or when you need to balance them against time spent on rigorous academics. Once he is 18- you can not force him to participate in interventions. I would urge you to front load now.

I think social skills in school make the most sense. Clubs and playdates are great opportunities to practice skills learned in a small group social skills group in school. Mere exposure to other kids in a group setting will not teach him those skills; if they did, having a twin would be all the intervention he'd need. He's needs instruction and perhaps support in those kinds of settings to make sure he's engaged and participating appropriately. And yeah, I get it, nobody else has to micromanage their kid and it isn't fair, but it's how he'll grow socially. 

I have a bias against therapy in school- a school counselor probably won't have the kind of background to be an effective therapist for his complex needs. Plus they only address school based stuff and home is critically important oo. Plus, I wanted to maintain some privacy around our homelife.  

Anyhow, just looking for guidance on how to balance competing needs without overloading his schedule. I want to make sure he has down time, free play time, and family time as well as going to school and therapies and doing homework for all of those. (And making sure his twin brother gets outlets for his massive amounts of energy as well. Energy levels definitely got distributed unevenly in utero. ) Would his developmental pediatrician be the best person to help us figure all that out, or what advice do you all have on this? 

Talk to the dev pedi; given your son's potential, he may want you to double down on certain therapies now ahead of the massive leap in social and emotional maturity his peers will be making in the next year or so.insert quote here

miranda, said:

I have asked his psychiatrist about this and mentioned that I was considering pulling DS from his in-school social skills; I told her I'd rather set up regular playdates with kids from his classroom, or rely on Scout activities. She agreed these activities sometimes can be better if the in-school opportunity is lame, and she though DS has moved beyond needing rote instruction on social skills and instead needs pragmatic opportunities to practice.

We found both were important. I don't believe we ever outgrow a need to learn social skills in a semi-rote fashion- look at all the people on these sorts of boards who ask about what they should wear to a Catholic funeral mass or gift at a bar mitzvah. Plus, at his age, the social rules of his peers are going to be in flux for the next 10-15 years; if he's going to stay with the pack, he's going to need on-going instruction on how his peers are thinking and acting and why. Otherwise he risks bring his 10 year old boy rule book to middle school, high school and beyond. Not a plan for success. 

[zaraceli]

I think it will depends of how you want to manage the time, and how much input you want to put on it. My kid has ADS as well he has a very busy schedule and in the schedule he stills able to play and enjoy life as well to have a good amount of sleep. Is just depend how much time you want to put in the afternoon in order to get him to his therapies. Also ask the school if they can excuse him to leave school one hour early because of his therapy, the way will give him a little bit of time to relax before going to see his therapies.

[waverly]

Social skills like you say you could maybe push into the school. Can you push OT into the school? PT in the schools, I think was more if they couldn't access the playground type stuff in the schools, but I mean it's possible, maybe not super probably but you could look into it. You can ask at your next IEP if that is coming up soon.

PT usually wanted at least twice a week, so I think it would be hard to do that plus another physical activity. I don't know the frequency on OT. I couldn't find any PT or OT providers that do weekends, but I was able to find a counselor that did Sat morning appointments. That may be an option.

[macchiatto]

Thanks so much for all the responses!

And re balance, I meant trying to figure out what's best for him in the big picture/long run, not best for DH and me. He seems to go through phases (esp with OT and PT) of making progress, graduating, and then over time needing to re-start again. His original OT and PT from round one (back in his EI days) both told me not to be surprised if that happened; that it was common for kiddos like him. We jumped into all 4 therapies within fairly short order especially to take advantage of summer, but over time it might be better to shift OT and PT so he doesn't have both at once (depending on his needs at the time, of course). Anyhow, I was the one who asked the DP about getting new evals in those areas but now that school's starting again and just with him being such a low-energy kid and with us getting suggestions from his counselor and case manager about adding other social activities, I'm just trying to figure out what makes the most sense.

I will see if we can get in with his DP again before too long and talk it through.

[macchiatto]

auntie, re ABA, I'm really not sure. His DP and case manager (who we finally just got through all the red tape and met with for the first time recently) both said they could help him with whatever he needs to work on at that point, whether it be life skills, social skills, etc., and both advised to just go ahead and put him on the wait list and when the time comes, we can always turn it down if it doesn't seem like an appropriate fit at that point.

[chickypoo]

I just found a local place that has therapists that will come to your home. Like as in psychologists or counselors. I had no idea this existed, maybe you could do something like that for the counseling if the school thing doesn't work? Then at least you don't have to factor in drive time.

Would he do tumbling? I've been hearing that stuff like that or dance are good for kids with hypotonia, and that could help socially too. I know you have to go with whatever day they offer, but it seems like more places are offering Saturday classes now. And if you enroll them both then that could benefit you all.

No idea if that helps at all.

[macchiatto]

chickypoo, thanks for the tip! During my prolonged counselor search, I came across two different ones recommended to me who had done in-home therapy for kids in this area. One of them didn't work and the other one strung me along on a waiting list for a while and then dropped off the face of the earth. Not cool. :/

Tumbling might be a possibility. He loved My Gym when he was younger. Both boys did a free trial class at a regular gymnastics center when they were 6 but I could tell Leo would have needed a *lot* of extra 1:1 help to keep up, but I wonder if just tumbling would be more doable.