Hating therapy...

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Hi! I am new here with a question I am hoping someone can assist me with. My daughter is 2.5 and has been diagnosed with ASD. She is non-verbal at this time. She receives therapy 3 hours per week. One hour of occupational, one hour of speech and one hour of special instruction. All three of her therapists are great, however, she still is not letting them in. They have been coming for 7 months now and she still cries the entire time they are here. She will not allow them in her space and will not interact with them. She has extreme stranger and separation anxiety, but after 7 months, it would seem to me that they shouldn't be strangers anymore. I do not feel that we have accomplished a single thing in the past 7 months. Any advice? Has anyone else gone through this? My heart breaks during each therapy session.

What kind of “therapy” are they giving her?
If she hates it this much, THEY ARE DOING SOMETHING VERY, VERY WRONG.
Don’t wait twenty years until she is articulate enough to explain.

Does the diagnosis and treatment make sense to you, or are you just going along because they claim to be experts? What do YOU think is a problem?

What do the grandmothers say? In some families, late talking is normal, is not a problem, and needs no treatment at all.

My mother didn’t talk until she was over two years old and then, when she did, her first utterance was a six-word sentence. She grew up, got married, raised five children and was fine.

I knew a family with a two-year-old who was not talking or walking and obviously way behind other kids her age. The local “experts” were insisting on their “early intervention.” However, the grandmother had home movies of the dad doing exactly the same things at exactly the same age. He grew up, became a professional, earned enough to support a stay-home mom, enjoyed a stable marriage… He was perfectly fine. If someone with a child like that needs advice, I would ask grandma what she did. And the answer was probably “Nothing. Just love him and let him grow up.”

I have stories like that, too - but unfortunately, for every story where a kid turns out fine without intervention, there's a story where the child stays nonverbal. Early intervention has been established as being important, especially so for kids who aren't verbal.

I do agree, though, that if she's so upset about therapy that nothing is being accomplished, maybe you should have a heart-to-heart with the therapists and set some boundaries. First, ask the therapists what they think: they may have experience working with kids like her, and it may be they've seen improvement after a certain amount of time.

That being said - never forget: YOU are the expert in your child: they are only doing what works for children in general. You might want to find out exactly what they are doing. See if it is strictly that she doesn't like being approached by strangers or if she's bothered by what they are asking her to do - you can test this by seeing if she'll do whatever it is with you.

All therapy is a long, slow process - but good therapists should be cluing you in to how it should be going and how long it should take.

Hi, thank you for your response!
I do not know what I think to be honest. She isn't only like this with therapists. Even at age 2.5, the only people she allows in her space without crying are my husband and I. We live hundreds of miles away from family so she only sees them once every few months-when she does, she will allow them to hold her IF they turn on her favorite TV show or have some type of food she wants. Other than that, she will cry when they are near. My Mom thinks that she will be just fine.
I have thought many times that she was just a shy child with a speech delay. She doesn't noticeably stim with hand flapping, spinning, etc. She does stack, but not to an extreme... It is quite mild.
She was diagnosed by a developmental pediatrician and we are now doing ADOS-her final appt with that is at the end of April.
She also has a sedated hearing test coming up in a couple weeks. They have to sedate her for it because she would not calm down when she saw the stranger who was going to preform the regular hearing test. She screamed and clung to me.
She has had no tragedy in her young life to cause such extreme anxiety. I am a stay at home Mom so there isn't anything that could have happened with a stranger to cause this. I know some stranger anxiety is normal at this age, but if anyone even tries to talk to her, she is very fearful.
Her receptive language is very very behind which is why we are doing a sedated hearing test. She had tubes placed at 12 months and has had problems with her ears. She responds to her name and will turn around to different theme songs (Bubble Guppies, Mickey, etc). She will also respond if I ask her if she wants to eat or drink. Most of these are done with visual cues though (all but her name).
I am feeling quite sad about it all. I do think that she would really respond well to therapy if her anxiety wasn't so extreme. I don't feel it is bc if the therapists bc she is anxious around all people but my husband and I.

I would ask the therapists their opinion and see how you feel after that. You have many things to sort out, and you've got time on your side: it is still very early.

The thing to remember is that you are in charge of the therapy, not the therapists.

I have asked their opinion and they are at a loss. They each tell me that they have never had a child like my daughter who just will not let them in after so much time. They are all very experienced and hearing that just breaks my heart!! The hard part is that she loves to people watch and loves to be out and about. She loves to shop and go out to dinner... Loves being in new places... It is just when someone gets into her space that she gets upset. It makes things very confusing for us bc although we do not see the typical autism symptoms at home on a daily basis, they do surface when she is stressed out by therapists and Doctors.
When I do talk to her therapists, they just encourage me to not give up... Which I will not do, but it is hard to continue to put her through it. I feel like it has the opposite effect on her only bc it is only at that time that her signs appear. Makes things hard.

If you have the ability, can you have them coach you through the therapies for the time being? I haven't dealt with this one myself, but perhaps if you did it with them in the room, it might either get her the help she needs or make her less afraid.

I can imagine, from her perspective, not being able to communicate and having a bunch of strangers show up that clearly have some kind of expectations of her must be very stressful.

I'm also noticing that stranger anxiety is a normal developmental stage for some children - it just tends to happen around eight or nine months. The thing to remember about autism is that it is a developmental delay, so it would be reasonable that she is affected by something that many kids have moved past if she's on the spectrum+. Just a guess, but many of us with older children on the spectrum find that it is helpful to think of our kids as about 1/3 less their biological age, give or take. http://www.answers.com/topic/stranger-anxiety-1

It is hard bc she actually does a bit better when I am not around. When I am around, she clings to me with her head on my shoulder while crying. Lately, we have had them do therapy in her bedroom-I watch on the video monitor. With this, she seems a bit more calm although still seems stressed. I think without me there to comfort her helps her to do what they would like her to do instead of her coming to me for comfort bc she doesn't want to do something. It is so hard! I feel like we have tried everything over the past 7 months. She will be 3 in six months... At that time, she will start preschool for special needs children. I am hoping that once she is in that routine of being away from me things will improve.

“Better” is a matter of opinion. I gave up hope and stopped whimpering, not because things were better,
but because it didn’t help and no one wanted to hear it. I was an emotional orphan with no protector.

Please check out the poem, “Quiet Hands.” It seems to have started a kind of mini-movement in the adult autistic community.
It is unfortunate that we have to wait a couple of decades for children to express that a particular treatment is counter-productive.
http://juststimming.wordpress.com/2011/ ... iet-hands/

My own kids sometimes tease me and call me "momma bear." That's ok with me.
Better to err on the side of momma bear than collaborating with the enemy, like my parents did.

Sounds like you've got it under control, then. Sometimes you just have to wait these things out and do the best you can.

Routine is a big deal.

ETA: the general consensus here on WP is that trying to teach kids not to stim is counterproductive. If the stim is in some way harmful (some kids hurt themselves) you can try to find a way to redirect it to another one, but if not, it's better to work on other things.

I don't have a lot of advice to add; however, I am in the same boat as you. My son is 2.5 and is exactly as you describe. He hasn't been formally diagnosed, but we have been doing 2 hours of therapy per week for about three months now. Just as you, we have had lots of crying and not a lot of progress. I feel that any progress my son has made is just his own development, not related to the therapy.

Honestly, I'm not sure how much longer I have the heart to put him through it. I'm unsure right now if it would be best for him to be forced into preschool, or if I should just continue to stay home with him. I've always leaned toward the side of "attachment parenting". I feel that if he is developmentally behind in terms of outgrowing the separation anxiety, then that is a need that he has, and I should continue to meet that need until he seems more able to cope.

My opinion is a little biased because I am also on the spectrum. I remember crying and clinging to my mother every single day of preschool and kindergarten. I was miserable in school, and I'm not sure that even the most accommodating school in the world would have changed that. I have almost no positive childhood memories, and I'm scared that my son will have a similar experience if I force him into these therapies, schools, etc.

Sorry I don't have much in the way of help, I just wanted to say that I can relate to what you're going through.

I was told recently that they won't diagnose children until they're seven now, and that two or three is way too young for a diagnosis.

This has never been true for classic autism, and more recently isn't true for AS or HFA. If someone you know is seeking a diagnosis and got this answer, they should try elsewhere.

Places here are trying to diagnose children as young as 1 with the the hope that aggressive therapy will help correct much of the autistic behaviors. This is being done by one of the leading research centers on Autism in the world, the UC Davis Mind Institute.

not the case. For kids with classic autism, the diagnosis is usually very young, before the age of 3. It gets a bit trickier for kids who are Aspergers or HFA, it can take till much later, and if someone told you that they wont diagnose till close to 7, I bet that is what they are talking about.

InnaLucia, I am not in Great Britain and I know from others' posts that the NHS is probably trying to save money, but that is not the case in the US. There is cost cutting etc. here too, so with the milder cases of Aspergers they are more likely to say someone is not clinically significantly impacted, or it does not impact their school work, etc. but you can get diagnosis before seven, especially if it is Autism or PDD-NOS.