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mikeys_mom
01-08-2013, 12:10 PM
We are in the process of hiring a shadow to help DS at school. He is in a private religious school and we will be paying for the shadow ourselves. (I know many of you think this is nuts, but it is really important to us to do everything we can to keep him in this religious environment. This is basically our last resort to see if we can get him back on track. We are giving it a month and if things don't improve, then we will move him. We do have a meeting set up with our local public school in a couple of weeks to see what they can offer.)

Using the shadow is short-term. The plan is for the shadow to work with him for most of the day initially and then taper off. Basically, we hope that within 2-3 months he will be able to function on his own in the mainstream classroom. They key is that we need the shadow to give him the proper tools to use on his own. The support is mainly for organization and keeping him on track to do tasks, take breaks and come back to finish up as well as pointing out to him when he starts to get frustrated and encouraging him to use his various techniques to calm down rather than explode.

We are trying to get some gov't funding for the shadow and have been told there is a good chance we will get some for at least a portion of the day.

I've spoken to a bunch of people and have 2 solid options for shadows;

1) Someone experienced with working with Aspergers children and trained in ABA therapy. This person can basically work with him with minimal instruction from us or the school. She knows what tools he needs to be taught. Her rate is high but doable for us on a short-term basis and we will have to keep the hours we use her to really just the minimum recommended by the school. The gov't funding per hour is less than her rate. But in terms of quality it seems ideal and both the school and psychologist have worked with this group and highly recommend them.

2) Someone with some special ed experience but not specifically trained in Aspergers or any type of therapy. She is young, patient and energetic but needs considerable direction in terms of what exactly she needs to do with DS. Her rate is much lower (almost half of option 1) and is the same as the gov't payout rate. The advantage here is that we could afford more hours with her. The concern is that because she isn't as experienced as option 1, she might provide too much support to DS and not give him the independence tools he needs, plus we need to really be on top of her and giving constant direction.

It basically comes down to quality vs. quantity. I'd appreciate any thoughts you all have on this. We need to make a decision fairly quickly.

snowbunnies300
01-08-2013, 12:55 PM
My honest opinon is that it will take longer than 2 to 3 months. There will be the learning curve between the shadow and your DS. It depends on what type of therapy/intervention he has had in the past. If he is use to working with another individual it may well go quicker. I guess my concern is the whole honeymoom phase, challenge phase and then acceptance phase followed by another challenge phase etc.

You know your child best. If you believe this can be achieved within 2 to 3 months then I would certainly go with the more experienced person. You have outlined perfectly why this person would be a good fit. If it is working well but your child needs continued support (even if light support) then you can consider going with a less experienced person in the future. Again my concern is that even if you go with a more experienced person it is possible that your DS needs one on one support to continue in a mainstream environment. Each child is so different it is hard to say who can have the support and then move to no support to the child who always needs some sort of support.

Will your school have a "safe spot" for him? My DS2 does not leave his classroom when he becomes upset. He leaves his desk and moves to another part of the room that is set up for him to calm down. Perhapse he could have a space he could go to when he is feeling like he needs a break and that too would help him when he becomes frustrated.

I wish you the very best! It is very refreshing to hear how the school is willing to work with you so that your DS can continue to recieve his religious education.

mytwosons
01-08-2013, 01:01 PM
I also think 2-3 months is very ambitious.

We never did an ABA home program, but I know many folks who do. Most of them have one certified ABA person (sorry, I forget the term) who oversees the program and trains the people who are there for most of the day. The people doing the hands-on work are spec. ed. students, etc. Could you perhaps have the person in option #1 train the cheaper person and gradually transition from option #1 to option #2?

mikeys_mom
01-08-2013, 03:50 PM
Thank you both for your responses. I always find it so helpful to hear opinions from those that have been through this before.

In terms of the 2-3 month timing, that is based on the advice of the dev ped and the school's special ed co-ordinator. DS is extremely receptive to the idea of having someone work 1 on 1 with him. He keeps asking when it will start. The school has intermittently sent in various assistants to work individually with him when they have had a spare staff member and it has typically gone well for him so I guess based on that they are predicting a pretty quick learning curve in terms of him getting comfortable with the shadow. But, it is good to keep in mind that others seem to think it will take longer than that.

Yes, he has a safe spot in the class, but he doesn't like to use it. He prefers to hide under his desk or another desk in the back or just roam around the classroom. He will get upset when the teachers try to direct him to the safe spot. That is part of what the shadow will need to work on with him - to teach him that it's not a punishment to go there.

Up until now he hasn't done much therapy. He did a social skills group this past summer and learned some relaxation techniques there. We will be doing ABA therapy at home as well. Starting in a couple of months (it's a gov't funded program and there is a short waitlist) we will have someone coming to the house weekly to provide services and give us techniques to help DS.
We are also meeting with a social worker this week to set up a program with DS to give him some additional support. This is through the hospital.

I just spoke with the person who runs the group for option 1 again to discuss timing of a meeting with her and my gut tells me it's the right choice for now. She is really experienced and while she won't be the actual shadow, I am assuming that her staff are well trained. Everything she said was exactly what we are looking for. The big cost difference between option 1 and 2 is because all the staff at option 1 are licensed therapists, albeit in different areas. Some OT, PT, behavioural, etc... Oh, and we are already potentially using their lower rate therapists because we don't need to have them do any major curicculum changes outside of school hours. They seem open to working with us on the fees if we do need them for a full day.

She told me that they will work on training DS's classroom teachers as well in terms of the terminology to use so DS will react better. That will be a huge help, especially for his afternoon teacher with whom he is constantly clashing with. She's a good teacher and really sweet, but has a bit of a harsh tone to her voice and it really sets him off.

The staff at option 2 (a different group from option 1) are more like camp counsellors for special needs kids. They will be there for the 1:1 but can't offer anywhere near the same level of support as the experienced therapists.

I do like the idea of starting with option 1 and then if we see that leaving him without the 1:1 support won't work, we can always explore the option of bringing in someone from option 2 at that point if we get the approval for gov't funding. Unfortunately if he needs long-term 1:1 support and we don't get the funding, we will have to move him to the public system as it's too costly for us to continue with the private shadow in addition to private school.

o_mom
01-10-2013, 10:05 AM
Late chiming in, but I think option 1 for now and if it looks like it will continue into the next year, have option 1 train option 2 (if they will) or have option 1 document thoroughly what works. It seems to me that initially, there will be a need to learn how to work with him and the experienced person will get that much quicker. Once things are running smoothly, if he still needs support, hopefully it will be documented what works and then someone who can just implement the plan can come in.

Gena
01-10-2013, 02:06 PM
I'm late coming to the thread, but I would recommend going with some one well-trained and experienced with ASD for as long as you can manage. For us, having well-trained experienced personnel work with DS makes things much easier and smoother. Several times in the past we have tried the route of what you are describing in option 2: young, patient, energetic, but not specifically trained or experienced in ASD. Over time, my son and I both found it frustrating to be somebody's first "real experience" working with a child with ASD.

I especially think it's important to have an experienced, well-trained person since IIRC your son's diagnosis is relatively recent and you have not done a lot of therapy yet. If you as a family are just setting up your therapy program/coping methods, it can help to have that well-trained experienced person as an additional resource.

I also think that 2-3 months seems very optimistic, but that's based on my own son's impairments. Still, the things you are talking about are really a lot to learn in that time. So if you really want to stick close to that timeline, you are going to need someone with a good deal of experience.

Good luck and keep us posted on how things go!

mikeys_mom
01-13-2013, 01:28 PM
Thanks o_mom and Gena for chining in. We had a meeting at the school on Friday. It's the first step towards formalizing his IEP. We decided that for the first month we will go with the experienced shadow for the full day and then reasses. The special ed co-ordinator, psych who did psycho-ed eval and one of his teachers were there. The other teacher couldn't make it.

I was not thrilled with his teacher's attitude. She pretty much seemed to be fed up with dealiing with DS and a few times sighed that she had tried everything suggested. I got the impression that she thinks the shadow will be a magical solution that relieves her of having to deal with DS. Both the psych and special-ed co-ordinator repeated to her several times that even if she write the daily agenda on the board, and repeats it out loud, that he needs it written in front of him, every.single.day because he can't process the information like that due to his non verbal learning disability. Psych reiterated that he is very bright and we need to ensure he isn't bored. The teacher's response was that he may be bright but there are technical things like conjugating hebrew verbs that he doesn't get. It seems like she just doesn't "get" DS. She is a good teacher but very set in her ways and it is not a good fit for DS.I had to really restrain myself from saying "Teacher, we are sending him to Jewish Day school so that he will learn about holidays, bible, culture and get the tools to be able to study on his own as an adult. He is very proficient in spoken hebrew, can read and understand. All his other challenges considered, if he doesn't conjugate verbs right now, I don't give a [email protected]!!!"

I discussed this with the special-ed co-ordinator privately after the meeting and she said that the shadow will absolutely not teach or discipline DS, that is still the teacher's responsibility. The meeting didn't instill a ton of confidence in me that the school knows what to do. I will need to keep bugging them on a regular basis to make sure we get the IEP in place. As if I don't have a million other things to do...

I am meeting with the shadow tomorrow at her office and hopefully we can come up with some good strategies. Also, we need to wait to see if we get the gov't funding for the shadow before she can start. I signed the form at the school on friday and need to follow up with them next week. Hopefully they can move the process along quickly.

In the meantime, our meeting with the public school has been postponed by them because the teachers union is in an ugly labour dispute with the government and there could be a strike looming...

We are planning to meet with another Jewish Day School as well to see what they can offer. It is not a perfect fit philosphically but it's more because many of the families there are a lot less observant. The values and traditions taught are pretty similar to the current school. The big difference is that it's a much older, more established school (MIL went there :)) so they have more resources available.

Lots for us to think about...

On a positive note, he had a good day in school on friday and said that he even participated in prayers and maybe he will try to join in on Monday also. Typically he refuses to participate unless he is chosen to lead the services and his teacher has given up on getting him to participate (yet another thing that bugs me about her).

Thanks everyone for all your help and support as we navigate this with DS.