Intro, and any advice?

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My name's Tim I am a full time stay at home dad to my 3 1/2 year old son named Loki who has been diagnosed with autism. Loki is non verbal, i started signing with Loki a year ago, he responds to some signs but doesn't use them. We have been doing floortime 5+ times a day, Loki is a very happy and extremely active little guy. A expert climber. We keep locks on all the doors, a big metal gate blocking off the kitchen, we have gotten rid of most of our furniture and replaced what we could with over-sized beanbags. He is the most physically fit toddler i have ever seen, his balance, stamina, strength is astounding. He recently has been showing some joint attention and has been playing appropriately. Loki has been GFCF now for 6 months and it was literally overnight we saw the improvements in his mood.

Whenever we leave the house I generally have to carry him. If I'm holding his hand he is dropping continually to the ground, if i let go of his hand he is darting off. He was in early intervention and and now is receiving services from the school system. A OT, ST, PT(which i know he doesn't even need) and teacher come to the house. He also has OT and ST outside the house. He has a TSS that comes to the house M-F for an hour a day. My biggest issues are with the TSS.

She started 3 months ago now, she was just hired then so i know she is new to this. When she is here she sits down and tries to get Loki to come to her and sit with her and play appropriately with his toys. She dialogues everything he is doing in full sentences, and using a vast vocabulary. Shes in his face continuously. I can see how much it annoys him. He doesn't sit to play while she's here for more than a few minutes at best. When she's not here i can get him to attend for 20+ minutes.


Loki has troubles when it comes to falling asleep and occasionally staying asleep.
Today Lokis TSS provider had a ISPT meeting, Loki was up from 1 am to 7 am and had only been asleep a couple hours when they showed up. They insisted on waking him up, I was a little agitated, but went ahead and tried to wake him up. He eventually woke in a foul mood. They observed him for 15-20 minutes yelling and crabbing reaching for me to pick him up and hold him.

Should i be looking for a new TSS provider? I have mentioned my opinions on how the TSS could best work with Loki, they go unheard.

My son is almost 3 and is diagnosed with autism too. I'm happy you found WP as parents with young autistic children are actually a minority here, most of the parents here have children with an Asperger's diagnosis. My son can label things and can memorize songs but can't tell you his own name or needs, so he has major speech problems too. I cancel appointments when my son doesn't get enough sleep because trying to wake him up is a good way to invoke a night terror, and those are not nice things .... I've had to stand my ground more than once with my son's therapists too when they suggest I do something that's not in his best interest. If she's too pushy I'd ask for a replacement.

I am sorry to hear about the waking him up episode. I would have probably told them to just come back on another day. The fact that they insisted you wake him kinda tells me they aren't very in tune with ASD kids. Mine can be an absolute bear when woken up like that, hitting and screaming would typically be involved.
Does the TSS tell you why she won't try to implement your suggestions about how to work with your son or does she just ignore you? She should understand that as parents, we may not have the special degrees or whatnot but we know our kids. In my quite limited experience, a good therapist can make a world of difference so if I was you I would seriously consider trying to get a replacement.

I think your first step is to talk with her and discuss what it is you're wanting/needing from her. You are her employer. You have that right. If you want her to limit her vocab/language, tell her. If your child has proximity issues she's not aware of, it's your job to tell her. She's new and at the stage where she's trying to build a rapport with your child. Build a positive relationship by telling her things she needs to know instead of throwing in the towel. After that, if she doesn't comply, find someone else. If sleep is an issue, it's up to you to notify your service providers to cancel. Time is money. They could be utilizing that time with someone else. As much as it wasn't fair to wake a sleeping child, it wasn't fair to have them come to the house when they weren't needed. That's my thought.

Overall, I didn't see anything all that bad. Give her a chance. Iron things out. Communicate your concerns, even if you have to sit down as a team and replan your goals. That's your job.

She ignores me, from my understanding of floortime the beginning steps would be following Lokis lead (keeping in mind everything he does, he's doing for a reason) to build a bond so that he will be more responsive to what she has been doing. I brought this up to her a number of times only to be ignored.

On a kind of unrelated note, during this ISPT meeting the TSS supervisor asked about my spouse and when she was due - end of June. She then asked if we had everything that we needed for when our daughter would be born. She said that she could report us if we didn't.

(I explained to her, although i really was agitated to even have to explain my spouse has a baby shower at
the end of this month, my mom and sister were going to order a couple things for us, and that if need be i have money and my spouse has income) then she asked are you getting SSI yet for Loki?

This has absolutely nothing to do with Loki, and i must say I was kind of offended to have to explain this to her.

i completely agree, Loki and I were asleep when they got here this morning. If i hadn't have passed out the minute after he did i would have called to reschedule. I would not have even tried to wake him up had it not been for that.

I'm sure paying for it now though, Lokis VERY crabby still and hasn't slept again yet.

I was not in your son's position as I have AS and was verbal and did interact with people at that age. However if someone I didn't like harassed me or intruded into my space, I would automatically shut down and tune them out if they did not eventually leave me alone.

I imagine your son probably does much the same thing. He's not going to like being pulled from his own little world one way or another but he should probably have someone working with him who does not make him want to retreat back into it.

I would go even further than that. While she is the employee, she's also the specialist. If she didn't have knowledge and expertise that the parents don't have, then the parents would not need a specialist and could just do it themselves.

I would start by asking her what she is trying to do. She is probably trying to follow a plan that makes sense. If the parent has information that may be useful to her in doing what she is trying to do - for example, their estimate of the child's current vocabulary level - provide it and let her work it in if appropriate.

If the parent knows enough to be telling her what to do, the parent should be doing it himself.

Sounds like she has no idea how to work with kids on the spectrum.

She needs to limit language at first. She needs to engage him in fun activities that he needs her for...like blowing bubbles, spinning around really fast, blanket swings, etc. Once they form a bond and he seeks HER out, it will be much easier for them to work together. Then she can start prompting for single words (swing!) when he seeks her out, instead of bombarding him with language that means nothing to him.

Those are things you can also do with him. Figure out all of his reinforcers, and you'll be in good shape!

It makes me really upset when I hear about stories like this. Your child can be happy and have therapy AT THE SAME TIME. If he isn't, then they aren't very good at their job.

To be honest, she has never worked as a TSS or anything similar prior to 3 months ago. We had to wait a week to get the TSS to start because they had to hire someone new. And I know I could do it myself I'm almost at the point where I would actually prefer it. She is fully aware that verbally he is that of an 8 month old. Her supervisor the last time she was observing told her she needed limit the vocabulary. 5 visits after that she is still doing the same old.

While she is here I am leading by example.

That was completely unprofessional for her to say something like that. She has an obligation to report any signs of ABUSE that she sees in the home, just like any other public service provider, such as a teacher, but her comment was uncalled for. No one wants to feel threatened in their own home.

My son had to switch to a new speech therapist(the prior therapist moved out of state) and it took a while for him to warm up to the new girl. It seemed as though every session resulted in tears because she wasn't taking any cues from him. Finally I told her that if something unpleasant needed to be done, such as feeding a disliked food, it would be better if I did that part of the session while she just observed. I told her that I didn't want my son to associate her visits with a negative experience, or he might dread seeing her come through the door every week.

Talk to her about the importance of building a positive relationship with your son. Nearly every therapist who has ever been in my home, has used the first few visits for just playing and making a connection with my son.
Also keep in mind that he may never bond with her. Just as you or I won't always "click" with another person, kids are the same way.

The hardest part about deciding whether or not to release a therapist, is knowing that you may be waiting a while for a replacement. It took a month just to get a physical therapist that made home visits, and when we finally got one, she was less than desirable in her work habits. She was likable enough, but she wanted to socialize with me too much, she was tardy frequently, and some visits were missed completely although she was still billing Medicaid for them. I think she also had some kind of "thing" going with the local durable medical equipment supplying, because she requested about $3000 worth of equipment that my son had no real use for.
I bit my tongue because I knew it could be another month or longer before he got a new PT.

Hi Chess,
Welcome to WP. You sound like you've covered all bases with your son. Our daughter was 3.5 when we noticed she wasn't talking but we didn't get her assessed or start ST till she was 5 because she was not cooperative with the assessment and hated the whole process.

When we took her back her first ST accused us of being negligent parents with her early intervention claiming we had deprived her of a year's therapy. We interpreted her accusation to mean we had deprived "her" of a potential $10,000.

Needless to say we found another ST. Likewise you should look for another TSS.

During the 2008 elections, my son's OT tried to encourage me to vote for McCain, "because Palin's baby has Down's"...Big effing deal, she's running for VP, not an advocate for disabled children. I countered with, "well Obama was a civil rights attorney for the disabled."

Oh snap!8)

She was an ultra conservative, Christian fundamentalist, and I take no issue with that, but at least once a month, this would leak into my son's session with her. I loved her to pieces and she was a great OT, but man talk about unprofessional behavior!!

With that said, I'm kind of hoping we get her back when my son gets his in-home services started back up.

Oh my! My OT gives me a religious Christian vibe too, she once said some of his jargon sounded like an "Amen" and she thought teaching Christmas songs would be a good activity last December because my son had somehow managed to learn Jingle Bells even though I didn't teach it to him. I'm not Christian and it made me a little uncomfortable because I didn't want to offend her too by being weird about why I'd rather teach my son Frosty the Snowman over something less secular (we put up a tree though so I can't blame her for being confused, but that's not uncommon). If she tried to get me to give Sarah Palin a vote though I think that would be our last session!