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Autism - Support Across the Spectrum Autism - Support Across the Spectrum

Does anyone help guide you?

Posted by on Jul. 28, 2013 at 8:34 PM
  • 41 Replies

We received my son's ASD dx over the summer after school was already out.  This was after 3 years of us knowing he probably had ASD but having it denied by our normal pedi and early intervention/therapists we already had in place for speech and OT delays.  So, I went over my pedi's head and took my son to a developmental pediatrician on my own for testing without a referral.  And I was right.

But my question is for anyone of you that have been doing this for a while, who guides your journey now.  I am at the point where I feel it is all me driven, and maybe that is how it is to be.  But I feel the dev pedi basically gave me the dx, and now it's up to me to figure out where to go from here.  I've searched the internet, read some books, gotten pamphlets at a local autism support place.  And I'm glad there's options we never knew about: ABA, floortime program, Son-rise, biomedical, GFCF diet, suppliments, horse therapy, music therapy, art therapy, etc.  But I feel like no one is helping guide which of those may really be helpful for my son.  I mean right now I have no pedi, and mine before was useless on this issue.  The dev pedi was really just the dx.  His already in place therapists are still working on their issues but can give me little direction on this - doesn't help most of these ASD therapies do not exist for us unless I drive a minimum of an hour away.  And school is out and he didn't have the dx prior so not sure if they will change anything or not to his IEP now.  I'm just wondering is it just me that doesn't know who should be helping guide this journey or is it really just up to the parents to try something, if it doesn't work try something else, do all the research on our own, etc.  I feel like someone with knowledge should be kind of coordinating things, making referrals and recommendations, but I really think it's just me.  Anyone else have this issue? 

by on Jul. 28, 2013 at 8:34 PM
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Replies (1-10):
Charizma77
by Carissa on Jul. 28, 2013 at 8:53 PM

My husband and I do it together but we do have a Behaviroral therapist who we get 3 hours a week at our home along with  TSS and we've had those from the start and they have been a big help. We had a case manager for a few years who was supposed to show us the ropes but she wasnt very helpful. I joined a support group when he was first dx and now I lead one but I found a lot of help from groups, cafemom has been a good source, his therapists and teachers..I'm not shy I ask everyone a lot of questions. Hugs!

JTMOM422
by Brenda on Jul. 28, 2013 at 9:02 PM

For the most part it is the parent who guides things. We decide what we want to try and what we don't want to try. We do the research on the different therapies. We ask questions of the doctors and therapists.

May I ask if he still does ot and sp. If he does I would recommend speaking with either or both of these therapists and seeing what they think you should do.

I was really lucky in the fact the doctor who dx my son is board certified developmental behavioral pediatrician and board certified pediatrician. So I didn't have to see a doctor and then get a referral for someone to test my son. This doctor said he wanted my son in speech and ot so he sent out referrals for them. He then decided that my son needed 10-12 hours of ABA therary and set that up. We are military though so that is why the doctor did the referring. We can't do anything without referrals from the military. I am a firm believer in ABA. I have seen my son go from no eye contact to giving some, no speech to saying some phrases, no pretend play to pretending to even be a dinosaur. There are other moms on here that prefer different methods to work with. I will agree that ABA is not for every child. You have to find what works best for your child. The last speech and ot my son received was not working for him. He spent half the time screaming. I pulled him out of that center and put him in a new one. He loves the new one and works well with the therapist. I think you just have to try and see what works for you guys.  I do recommend having the school test him when school begins. They won't add the autism dx to his iep without the test being done. 

kajira
by Emma on Jul. 28, 2013 at 9:18 PM
1 mom liked this

First... Deep breath. There IS such a thing as *too much* therapy for a kid... so focus more on learning experiences that practice social skills, communication, etc. I would definitely go with martial arts, art, and animal therapy as a starting point.

Find a social activity that involve kids his own age that have something in common with - 4h is great for this, but I think you might have to be 9 to join - so martial arts can really help.

All I can say is gluten-free diets and vitamins REALLY can help - but take him to an allergist, get him tested for sensitivities - also, see a natural doctor who will do vitamin and blood tests to make sure his system is fine before you supplement or mess with vitamins - this will ensure he's getting what he needs and NOT too much.

Some over the counter vitamins can be toxic, or have extreme side effects, natural doesn't mean safe.

Use stories to explain learning concepts, visual cues often help.

Other than that, I suggest you find a local support group either for autistic kids for him to participate in, or a mom's group for family support.


Good luck.

p.s. I'm autistic and married with 2 kids. Being autistic is not always a bad thing.

Momof4AEMW
by Gold Member on Jul. 28, 2013 at 9:55 PM

He does still receive hospital speech and OT that we had prior to the ASD dx.  I think we are going on like year 2-3 on both of those.  He also receives speech and OT from his IEP in school. 

As far as school testing him for ASD also, I really don't know about that.  I know the dev pedi that did the dx gave me a sheet for the school with the dx stated and a couple of ideas to fit into his teaching.  His teacher is actually who did the Mchat and several questionnaires for the dev pedi appts, so I know she gave her input there.  I have told her I got the dx, and she did not mention we would need to do more testing at school.  Guess I will see in August.

I am very interested in the ABA idea as I read so many of you using it and finding great benefit.  And my son has some major behaviors that hinder every aspect of him enjoying his life both at home and school.  I think they could make some break throughs that we have not been able to in other therapies.  But the closest place that does it is 1 hour away and I don't think I have any way to have it done her in the home, so we'd have to transport for it.  That would be such a big time committment with the drive plus therapy time that I am just not sure.  It's like I've found all these new things to try, but none seem to be locally attainable, so I'm kind of stuck at how to proceed.

Quoting JTMOM422:

For the most part it is the parent who guides things. We decide what we want to try and what we don't want to try. We do the research on the different therapies. We ask questions of the doctors and therapists.

May I ask if he still does ot and sp. If he does I would recommend speaking with either or both of these therapists and seeing what they think you should do.

I was really lucky in the fact the doctor who dx my son is board certified developmental behavioral pediatrician and board certified pediatrician. So I didn't have to see a doctor and then get a referral for someone to test my son. This doctor said he wanted my son in speech and ot so he sent out referrals for them. He then decided that my son needed 10-12 hours of ABA therary and set that up. We are military though so that is why the doctor did the referring. We can't do anything without referrals from the military. I am a firm believer in ABA. I have seen my son go from no eye contact to giving some, no speech to saying some phrases, no pretend play to pretending to even be a dinosaur. There are other moms on here that prefer different methods to work with. I will agree that ABA is not for every child. You have to find what works best for your child. The last speech and ot my son received was not working for him. He spent half the time screaming. I pulled him out of that center and put him in a new one. He loves the new one and works well with the therapist. I think you just have to try and see what works for you guys.  I do recommend having the school test him when school begins. They won't add the autism dx to his iep without the test being done. 


 

Momof4AEMW
by Gold Member on Jul. 28, 2013 at 10:10 PM

Thanks.  I always like to read what you write, and appreciate that it comes with the inside perspective of being autisitc.  I agree, there can be such a thing as too much therapy.  That is why I'm trying to sort out the right things to try from all that is available without actually trying all that is available.  I have 3 SN children, so we were already maxed out on therapy time prior to the ASD dx.  And I don't want to look back and see their whole childhood was spent in therapy and not being kids.  Yet I don't want to deny my son these new treatments that may be more beneficial to him than what we have tried prior.  At the same time I can't let speech and OT go.  My goal is not to 'fix' him or 'change' him, I just want to make him able to be comfortable and able to enjoy his own life.  And he has some developmental gaps to fill and behaviors/anxieties to adjust for him to be able to do that in addition to the ASD.  I'm just not sure what the best approach is of what all new there is available to him and wish there was a professional guiding this journey.  Sadly though, parents do know their kids best so I am sure it is all up to me.


Quoting kajira:

First... Deep breath. There IS such a thing as *too much* therapy for a kid... so focus more on learning experiences that practice social skills, communication, etc. I would definitely go with martial arts, art, and animal therapy as a starting point.

Find a social activity that involve kids his own age that have something in common with - 4h is great for this, but I think you might have to be 9 to join - so martial arts can really help.

All I can say is gluten-free diets and vitamins REALLY can help - but take him to an allergist, get him tested for sensitivities - also, see a natural doctor who will do vitamin and blood tests to make sure his system is fine before you supplement or mess with vitamins - this will ensure he's getting what he needs and NOT too much.

Some over the counter vitamins can be toxic, or have extreme side effects, natural doesn't mean safe.

Use stories to explain learning concepts, visual cues often help.

Other than that, I suggest you find a local support group either for autistic kids for him to participate in, or a mom's group for family support.

 

Good luck.

p.s. I'm autistic and married with 2 kids. Being autistic is not always a bad thing.


 

Momof4AEMW
by Gold Member on Jul. 28, 2013 at 10:13 PM

Thanks.

What's a TSS? 


 

Quoting Charizma77:

My husband and I do it together but we do have a Behaviroral therapist who we get 3 hours a week at our home along with  TSS and we've had those from the start and they have been a big help. We had a case manager for a few years who was supposed to show us the ropes but she wasnt very helpful. I joined a support group when he was first dx and now I lead one but I found a lot of help from groups, cafemom has been a good source, his therapists and teachers..I'm not shy I ask everyone a lot of questions. Hugs!


 

kajira
by Emma on Jul. 28, 2013 at 10:24 PM

If he's getting speech and OT in school - I might suggest looking into getting some social skills help at school too.

The school can provide * a lot * of the weekly recommendated therapies. Leave it AT school - when he's home with his family, it's about erlaxing time. The hardest thing for me as a kid being involved in all these therapies, was I never had enough time to just chill out and relax. It was day after day of intensity with no break, no calm, no chance to recover from the stress of everything. It caused my anxiety response and panic to be through the roof - I was scared to go to sleep because I knew that school would be too intense and I never got a break.

It would sometimes make me physically ill - chronic headaches from sensory overload with out having any down time to just relax.

Play time is sensory overloading too - so when I say there's too much thing as therapy, you need to remember that unlike a normal person, we don't always "relax" the same way you do.

When I take my kids to mcdonalds, I need an hour to recover as an adult, the lights, the sounds, the interactions... what people do to take a break from cooking dinner, is more stressful on me, then cooking dinner, eating as a family AND doing my own dishes.

So, for an ASD people, relaxing isn't the same as for a NT kid - playtime, or any activities are often just as stressful for us as the therapies are and we don't always have enough "juice" for both.


Charizma77
by Carissa on Jul. 28, 2013 at 10:44 PM

A therapeutic support staff, they work along side the BSC (Behaviorial specialist).. Ashton has a TSS come to the home and also goes with him to our wednesday evening church program. The goal is for them to show us and his teachers or others who work with Ashton ways for him to thrive in his surroundings. There is some programming but its also some data collecting and hands on. It's kind of hard to explain but how things work in PA. Not sure about other states.. We were assigned hours after he was dx. It has varied over the years. TSS are common in the schools around here with kids with autism or ADHD as well. Ashton doesn't need one in the school so he just gets home/community hours.


Quoting Momof4AEMW:

Thanks.

What's a TSS? 


 

Quoting Charizma77:

My husband and I do it together but we do have a Behaviroral therapist who we get 3 hours a week at our home along with  TSS and we've had those from the start and they have been a big help. We had a case manager for a few years who was supposed to show us the ropes but she wasnt very helpful. I joined a support group when he was first dx and now I lead one but I found a lot of help from groups, cafemom has been a good source, his therapists and teachers..I'm not shy I ask everyone a lot of questions. Hugs!





Momof4AEMW
by Gold Member on Jul. 28, 2013 at 10:53 PM

 Hmm...hadn't heard of that or BSC.  Not sure that we have either here.  We are in Iowa.  I'll have to check it out.


Quoting Charizma77:

A therapeutic support staff, they work along side the BSC (Behaviorial specialist).. Ashton has a TSS come to the home and also goes with him to our wednesday evening church program. The goal is for them to show us and his teachers or others who work with Ashton ways for him to thrive in his surroundings. There is some programming but its also some data collecting and hands on. It's kind of hard to explain but how things work in PA. Not sure about other states.. We were assigned hours after he was dx. It has varied over the years. TSS are common in the schools around here with kids with autism or ADHD as well. Ashton doesn't need one in the school so he just gets home/community hours.

 

Quoting Momof4AEMW:

Thanks.

What's a TSS? 


 

Quoting Charizma77:

My husband and I do it together but we do have a Behaviroral therapist who we get 3 hours a week at our home along with  TSS and we've had those from the start and they have been a big help. We had a case manager for a few years who was supposed to show us the ropes but she wasnt very helpful. I joined a support group when he was first dx and now I lead one but I found a lot of help from groups, cafemom has been a good source, his therapists and teachers..I'm not shy I ask everyone a lot of questions. Hugs!

 

 

 

 


 

HippoCat
by Hadley on Jul. 28, 2013 at 11:25 PM


What do you find relaxing?

Quoting kajira:

If he's getting speech and OT in school - I might suggest looking into getting some social skills help at school too.

The school can provide * a lot * of the weekly recommendated therapies. Leave it AT school - when he's home with his family, it's about erlaxing time. The hardest thing for me as a kid being involved in all these therapies, was I never had enough time to just chill out and relax. It was day after day of intensity with no break, no calm, no chance to recover from the stress of everything. It caused my anxiety response and panic to be through the roof - I was scared to go to sleep because I knew that school would be too intense and I never got a break.

It would sometimes make me physically ill - chronic headaches from sensory overload with out having any down time to just relax.

Play time is sensory overloading too - so when I say there's too much thing as therapy, you need to remember that unlike a normal person, we don't always "relax" the same way you do.

When I take my kids to mcdonalds, I need an hour to recover as an adult, the lights, the sounds, the interactions... what people do to take a break from cooking dinner, is more stressful on me, then cooking dinner, eating as a family AND doing my own dishes.

So, for an ASD people, relaxing isn't the same as for a NT kid - playtime, or any activities are often just as stressful for us as the therapies are and we don't always have enough "juice" for both.




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