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Days like today are a like a punch in the gut


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I posted on the chat board that The Marvelous Flying Marco received his eval results. While we were expecting mild autism, we were not expecting the dx of severe autism with level 3 support needed.

 

Today I watched a neighbor child only a few months older than our Marco. I guess I'm just so accustomed to Marc's behavior that it doesn't hit me, until I saw a NT child his age (not atypical in anyway - just typical) how NOT typical Marco is. Little things that I guess I just saw as "Marco" and that are really "autism." The way Marco lowers his head to the floor to rub it against the carpet or hardwoods (he has a patch on the top of his forehead now from it), or the way Marco doesn't really carry on conversations with anyone other than himself and, very occasionally, me and his dad or sister - and even those "conversations" that Marco does carry on just aren't comparable to the way other children his age interact. I'm not used to not having to keep a constant eye on a child either, or not cringing inwardly (and outwardly) when something spills or a banana isn't opened correctly anticipating a complete meltdown.

Yesterday was a rough day. We had two back-to-back major meltdowns. The first because he erased a tiny part of an arrow I'd drawn on the blackboard and I couldn't correct it exactly as it had been; the second was, if I remember, over a banana that hadn't been peeled correctly (or maybe that was today). 

 

 

I don't want his life to be hard. I told my husband that I was okay and that I wasn't devastated by the dx. I really WASN'T at the time... but, suddenly, a week later and seeing other kids his age, I am. I really, really am. I've worked with severely autistic children before. Many of them didn't receive the intensive intervention that Marco has available to him, but still - I'm sad today. 

I've spent the last week looking at private schools for DD14. Our dyslexic daughter who really should NOT be in a brick and mortar school - but there is just no way that I can handle the 20-40 hours of therapy they want for Marco AND successfully homeschool high school... so she's going to school next year. I'm tired.

 

He is so beautiful, so perfect, and I'm so blessed. So why in the Hades am I so sad right now?

Edited by AimeeM
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You didn't screw a thing up. You have provided your kids with the love and support and attention they needed, even on the really hard days. You were dealt a really tough hand and you kept going. You didn't screw up anything

You are an amazing mom. That doesn't alter the fact that you are facing some enormous challenges, but they most definitely are not your fault. Hugs, honey. You need rest and a break. Will you qualify for services that include help with your son's care?

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It is very hard to plan a trip to Italy and end up in Holland. But in time you and your family will adjust. Your a terrific mother and have a supportive husband, you will get through this together.

 

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

 

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You didn't mess up. God blessed him into your family bc you are where he needs to be. It doesn't mean it is easy. It doesn't mean you won't make mistakes. It just means he has you to love him and believe in him for whoever he is. It means letting go of your thoughts of who he should be and accepting that one day at a time you learn about the special person that actually stands before you. And you start celebrating little things that other people take for granted.

 

Tomorrow is another day. That is the only one you have to face for now.

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My son does not have autism, but does have neurologic and language issues. Most of the time, for us, we don't see the disability, it's just our boy. But I have experienced what you are feeling today. Those moments when you see the differences between your child and the typically developing neighbors, kids in the 4H, at church, etc. It hurts. But, the days of joy with our son far outnumber the days of hurt. Give yourself some time to process, to breath, and then you'll be able to start to figure out what to do. One day at a time, sometimes one hour at a time. Hugs and prayers for you and your whole family.

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You didn't screw a thing up. You have provided your kids with the love and support and attention they needed, even on the really hard days. You were dealt a really tough hand and you kept going. You didn't screw up anything

You are an amazing mom. That doesn't alter the fact that you are facing some enormous challenges, but they most definitely are not your fault. Hugs, honey. You need rest and a break. Will you qualify for services that include help with your son's care?

I don't think I trust anyone with him. Well, not outside of some trusted sitters that he adores. He's amazing and smart and affectionate - but he can be frustrating and I just don't want "just anyone" (even someone with experience, considering I found out that ABA therapists are only required to have an hour or two of training!) to watch him.

My aunt offered to become an ABA and drive the 45 minutes several days a week to both work with him - and to give me a break. She is such a blessing. 

Calming down a bit, my kids have some exceptional needs, but I'm blessed and I need to remember that. My husband is amazing, my daughter is great with her brothers and adores them and is a huge help, my middle son is comic relief; we have the resources to give Marco what he needs, a beautiful home, and our family life is generally balanced and centered. Marco, for all the meltdowns, is hands-down the most affectionate, intelligent, funny little guy I know.

 

 

Edited by AimeeM
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I think the level of grief you're feeling (and going to feel) is normal.  If you have someone you can talk to about that (pastor, priest, whatever), you could try.  I think sometimes I try to stay busy so I don't have to think of the why.  I find comfort in the people I connect with who've gone before who are happy.  When I go to the autism charter and I see families with various levels of autism getting interventions, getting loving care, and they're happy, it encourages me.  I'd encourage you, when you're ready, to connect with some places like that.  Not just individuals, but places.  Expand your village.  I've found I really had to expand from my homebirth-homeschool-homefuneral mentality and accept help.  It's very hard.

 

It's hard to accept help because you don't know if they work as hard as you do at being the BEST and learning the best methods.  You just don't know.  But BECAUSE you're willing to work that hard, you're going to figure out and question and find people you can collaborate with and work with.  YOU will be an essential part of his team!  You are his best first ABA person.  You just need a bunch more people who are as committed as you.  Because if you don't take care of yourself, you won't be there for him.  Your aunt is such a dear to make this offer!  Definitely take her up on it.  It will bless her and you.  And how wonderful to be an adult woman and STILL have your aunt there for you.  That is AWESOME.  My aunts are there for me in their ways, even though I'm soon to be 40, shhh.  I'm so glad you'll be getting this help.

 

I know you're so sad about him sleeping on the carpet, not in a bed, but I thought wow, he's asleep!  At least he's asleep.  It will be ok.  You're going to get interventions and help and things will work.  And you're reading these bad stories (and the good!) and it will help you collaborate more.  I don't find that most of the scare tactics are completely true.  I think you can slow down and learn and then collaborate with someone.  You're probably going to benefit from lots of things, so I don't think you have to buy into a camp.

 

Is your dd cool with going to school?  It's true, my ds has consumed my time to the point where dd has had to do a lot on her own.  If you have a good situation and she's cool with it, it's probably the wiser choice.  The only other choice would be to send him and keep her.  It doesn't sound like that's what you want to do.  She's had your nurturing and she'll probably blossom and be fine.  It's hard to advocate in multiple places at once.  Again, maybe expanding your village to allow in this help, in whatever form it becomes, will give you that flexibility.  

 

Some people came down really hard on ABA in the other thread.  Things have changed so much, it can't possibly be accurate to say what it is and extrapolate from many years ago.  I agree you're going to have a lot of people tugging at you.  I think some of it is resolvable when you realize maybe those people had level 1 (like my ds) or level 2 kids.  Or maybe they had certain behaviors but not other (possibly more challenging or more dangerous) behaviors.  And maybe all the blended techniques and new things they do WILL be done with your ds eventually, but maybe right now it's not so much what but *when* to do those things.  Each thing sort of lays the foundation for the next.  I wouldn't assume you're doing a bad job.  I think do what makes sense to you and find someone you can collaborate with in an intellectually reasonable way.  

 

I'm so sorry it's hard right now.  It's ok to grieve.   :grouphug: 

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I hear you.  I knew my son was delayed, but it wasn't until we started the parent participation preschool in September that I realized how far behind.  I came home after the first day and cried for nearly an hour.  For me, that was the impetus to pursue more services for him.  So, I don't think being sad is necessarily a bad place to start if it gives you the kick in the pants to make it through the next few frustrating months of hunting down new services.

 

It is not your fault.  He is exactly who and where God intended him to be.

 

I hope you're able to find services that make life less stressful for all of you.  Lots of hugs!

 

 

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Oh hugs to you! You are going through the grieving process which is appropriate and normal. Now what comes out on the other side is what matters. It can either make you bitter or better- better equipped to help your beautiful, unique, wonderful son. I am sure it will be the later. I realize how different my little guy is every Sunday I help in his Sunday School class. We have terrific SN buddies trained to provide supports for all the SN kiddos (there are a lot). But there are lots of NT kids too of course, and the difference is deafening. Every time I see a friend with a NT little boy chattering up a storm I feel the way you do. And I get the what do I do with my other kid(s). I have 7 others who still need me. It is overwhelming. Hang in there!

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:grouphug:  :grouphug:  :grouphug:

 

It is completely normal to feel this way. It is hard even when you know it is coming and sometimes emotions don't come out until the dust settles and you can see things more clearly. We did not get the diagnosis until ds was 14. I knew he was on the spectrum but I could not have imagined what the reality of it all meant. It was much more severe than we anticipated. It retrospect I realized to that, no he really did not behave as typically as a NT child. I was just accustomed to him. He could really have benefitted from the early interventions he could have had if we had him diagnosed earlier. I congratulate you for getting the diagnosis early. It means you can maximize your time getting him the help he needs. Despite how you feel right now you ARE a good mom. It is ok to grieve for your child and it is normal and healthy. The clouds will lift eventually and you will find yourself rearing to go on his behalf. Yes our children are a beautiful blessings even if they are not what we expected.

Edited by MyLittleBears
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Those Marco things are still Marco things.

 

I don't sit around and go "oh, how NT" when my daughter does incredibly stereotypical things for her age. They can also be very 1st-grade-girl-with-two-brothers things, but it is not like "oh, let me view her through that lens" to an extreme extent (though it is also a way to make sense of her!).

 

His little endearing things are still his little endearing things.

 

I am sorry about your daughter. That is really hard to have to change plans for another child.

Edited by Lecka
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I don't think I trust anyone with him. Well, not outside of some trusted sitters that he adores. He's amazing and smart and affectionate - but he can be frustrating and I just don't want "just anyone" (even someone with experience, considering I found out that ABA therapists are only required to have an hour or two of training!) to watch him.

My aunt offered to become an ABA and drive the 45 minutes several days a week to both work with him - and to give me a break. She is such a blessing. 

Calming down a bit, my kids have some exceptional needs, but I'm blessed and I need to remember that. My husband is amazing, my daughter is great with her brothers and adores them and is a huge help, my middle son is comic relief; we have the resources to give Marco what he needs, a beautiful home, and our family life is generally balanced and centered. Marco, for all the meltdowns, is hands-down the most affectionate, intelligent, funny little guy I know.

 

The deal with ABA is that there is a BCBA (Board Certified Behavioral Analyst) who supervises the direct therapists. It's true that some of them have no formal education, but a good BCBA will train them well. In the many, many years we've been doing this I've come to the conclusion that someone's educational background doesn't affect how well they do in one on one therapy sessions. Some of our best have been women who picked it up as a slightly better than minimum wage job after their kids started school. Some people that had psych degrees and planned to be BCBAs turned out to be duds. The absolute best was a guy who took a year off between undergrad and med school. It's a mixed bag. A good BCBA will quickly weed out the duds. That's their job. It is super important that your child work with different people. They need to generalize skills and not be dependent on subtle prompting from just one therapist. Unfortunately, your state seems to have expanded quantity without assuring quality based on Kathryn's comments. Hopefully you can find a good BCBA. That's the really essential part to a good program.

 

I wouldn't worry about the carpet sleeping. GW did stuff like that for years and now sleeps happily in his queen size bed in his own bedroom. It may take longer than normal, but you'll get there.

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Of course you're a good mom! We've seen all the posts in the past about how hard you work to keep your little guy safe.

 

Autistic people are not wrong or damaged. We all know how important they've been to the advancement of the human race throughout the years. They're not NT, sure, but they are necessary and important and they're not mistakes. We live in a stupid society that doesn't want to make room for them, but thank the Lord people are finally trying help them succeed within our society. Not like back in the past when autistic people would have been brushed aside with disgust or put in asylums wiith no recourse.

 

Of course you feel sad. Of course you do. And of course it took days for it to surface. And no he's not NT. He's autistic. And it's not a mistake. His brain is important and useful and beautiful because it's rare. And it's a lot of work and heartache for you as you prepare him to make his way in this rigid world.

 

It is so hard. And of course you love him so much. And of course he's affectionate and intelligent and funny. And Marco is necessary and valuable and worth everything you pour into him.

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We are often around younger and/or special needs kids. My 11 year old comes across so high functioning, mature, and socially capable. I rarely see him with same aged peers, but when I do, it is sad. He can't relate to them in any way (part of that is because we homeschool) and has no idea how to interact. With littler kids, he happily still plays tag, jumps off the swings, and just runs around.

 

Don't feel bad about the bed! My son's mattress is on the floor (so he can use it as a giant weight when he needs to) and my 15 year old decided to sleep on her floor with no mattress at all!

 

Several weeks ago I had to buy my son a dog toy meant for large dogs to try to get him to stop chewing on me and my daughter (it works!).

 

We're just getting started with a good ABA team at 11 years old!

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He is so beautiful, so perfect, and I'm so blessed. So why in the Hades am I so sad right now?

 

Because he is your beautiful, sweet, cherished child. Because you want so much for him and you want so much to help him. Because your dreams for him may not be fulfilled in their current form, and it's hard to let go of them. Because you worry about what will happen to him. Because maybe you're scared about how you're going to help him navigate these challenges. It's hard. It's NORMAL to feel sad about it even as you count your blessings.

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With the proper intervention, it is amazing how much improvement in functioning level there can be. A few months ago, I had to send some of my DD's old reports from when she was 2 1/2 to 3 to our BCBA because our new health insurance company was questioning the ASD diagnosis. I re-read the reports and if I did not know they were my DD's, I wouldn't have believed it was the same child. She is still delayed compared to her NT peers but it is like night and day how much better able to function she is.

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:grouphug:

 

Not much I can add to what others have said; I think your Marco has an amazing, supportive, capable mother.

 

It's ok if you need to cry sometimes, you have been and will be there when he needs you.

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Thank you so much everyone. I can't express how much the support means to me.

 

I'm still conflicted. Days like yesterday Marco seems to do so well that I wonder if it's possible the dx was mistaken and given due to an abnormally "bad day." Then I remember that she observed him over several different days, months apart. I wonder if I'd filled out my "home" portion of the eval just a little differently, if he'd have a different dx. I wonder if I maybe saw things as more severe than they actually are. 

And tomorrow, or today, the behaviors will be at their peak again and I'll know that I did my part the best I could and that the eval was as accurate as it could possibly be (considering his language delay).

 

But, for now, Marco is sporting a lipstick kiss on his cheek from his older sister, laying on the couch under a blanket playing with play-doh and his phone apps, and is content - so I am, too. We left him with a new sitter yesterday (who is also DD14's math tutor) while we were out and she is head over heels for Marco and Nico. Me and DH were able to enjoy a nice evening out after DD's art show.

 

I also was able to snag a lovely teenage boy (DD's friend) who I've noticed at chess club seems to sincerely enjoy my younger boys, and he wants to sit with the boys sometimes. I'm sure the money he'll make doesn't hurt, but he really likes playing with them, seems to know inherently how to be gentle and safe even while engaging them in play - and easily keeps up with them, lol.

 

My support system is second to none. 

And I don't just mean my in-the-flesh support system, either - because you guys are the best.

 

 

Edited by AimeeM
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People like my ds too.  I don't think having autism means you're unlikable.  

 

On your sitting on the couch thing, I think that's the point, that he's ALONE on the couch.  He's happy in his own world.  Now what happens if you pull him out and say hey come into MY world and do some shared imagination with me or interaction with me or non-preferred activity with ME?  Then what happens?  

 

Because, yeah, if you just leave my ds alone to do whatever he wants and surround him with people who are there only to do what he wants, he's really easy to get along with.  Unfortunately, life, school, etc. doesn't work like that.

 

And fwiw, you've gotten a lot of advice and thoughts about ABA.  I'll just say, in case I haven't said it clearly hear on the board, that I'm bringing in an ABA tutor to work with my ds.  She's planning 3 days a week.  So that's 4 days when you add the behaviorist one day.  It's a pretty big push.  See as long as everything was what he wanted, we could make do.  Once we really had to have him do more, do non-preferred things, transition, deal with things that are challenging/frustrating, etc., etc., then things really came to a head.  And people can say oh just work around him!  Well we DID.  Oh man have we worked around it.  

 

Reality is we were subtly accommodating him to keep the peace, and reality is his behaviors seemed kind of normal in our home.  But the skill deficits there are going to bite him later, no matter how much I accommodate and keep the peace now.  So you'll see these kids having reading comprehension problems, anxiety, rigidity, etc.  I'm saying sometimes the really awful breakdowns become apparent LATER, but the foundational skills were from NOW.  The foundation of reading comprehension is shared imagination, ie. shared imaginative PLAY.  So the things they can be doing therapeutically now create the foundation for things later.  

 

And could you blend with someone else to do those?  Maybe.  How much help do you feel you need?  I think sometimes these systems are giving answers that fit the general audience and not homeschoolers.  We are, by definition, more interested in learning how to do things for ourselves.  We're very willing to be partners in the process and want providers we can collaborate with.  I found the Social Thinking workshop (2 days) I went to recently IMMENSELY helpful.  If you don't know what problems you're trying to solve now (like there's nothing seriously majorly pressing, like his ability to go to bed, tolerate toilets flushing, eat, etc.), then could I suggest a Social Thinking workshop as a place to start?  

 

Then you could say ok this is what I bring to the table and this is what I'd like to outsource or have some help with, kwim?  And I do think, as I look at some of the therapy materials like TML, that they're really easy to implement and really obvious to homeschoolers.  So ABA calls it DT, but I agree it just depends on what degree he needs it.  Some of that sort of more comfortable ABA teaching really is just good homeschooling (one-on-one, contextualized, repeated till it clicks).  And depending on the extent of what he needs, maybe you'll say ok I *can* do that.  Maybe you'd like to outsource some social thinking.  But right now they're just presenting it like BRING IN THE ABA, without telling you that maybe some of it you could do, some of it they could do, that it just depends on the mix of what he needs.  

 

So maybe doing some reading on that would let you sort out what kind of mix you want.  Definitely for some kids an all the way placement is best, absolutely.  But maybe what your gut is saying is you want some kind of mix, with SOME help but also some things you do.  And fwiw, maybe you'd get those people in there, get some collaboration and trust going, and go wow I *do* like these people and do want to adjust that mix.  But I think you could start somewhere, get the help you want, and work it out.  For us, just saying oh we can make it work didn't really work out so well.  I would encourage you to get SOME help, even just SOME.  Lots of kids go to preschool at his age, and you probably wanted to do preschool.  What if you do HALF of what they're recommending and called it preschool?  What if they came 3 days a week for a "this is preschool" kind of thing.  Just some help would probably let you ease into it and get a feel for things.  

Edited by OhElizabeth
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He sounds like a sweet kid and loved family member :)

 

I think those things like "mild" or "severe" do have a subjectivity.

 

Maybe the person scored him so you would be in a position of having a lot of options, and being able to pick and choose.

 

It is better in its way than finding out you have few options or that you would like to try something else.

 

There are not enough hours in the day to do everything that my son qualifies for.

 

Like -- he qualifies for speech, OT, and ABA.

 

I had situation recently where I was kind-of scolded by somebody for not having my son in private speech therapy, when it would be covered by insurance.

 

There is just not time!

 

I also researcher last summer, and spoke with someone at the very nice speech clinic option, and she was able to tell me that the programs my son would do at that clinic, were the same as the programs he would be doing in ABA, for speech/language.

 

If he were more advanced or did not have other options, then it would be different, but I am actually not depriving him of any speech therapy even though I am driving him across town to some 1-hour sessions here and there.

 

The woman I spoke to was very helpful and I would take him there if it becomes the most appropriate choice for him.

 

Sorry, rambling.

 

It is just -- if you get told "40 hours of ABA" and then you also want to do speech and OT and maybe swim lessons or gymnastics or horseback riding (all popular in my town) then there are literally just not hours in the day, and then you are figuring out what makes sense and priorities and how you want to set things up.

 

Though the time can double if you do things like have an ABA tutor go to OT with your son, or to gymnastics with your son. Those are things that people can do in my town, and sometimes it makes a lot of sense, and then you do have times that the hours overlap and you can be doing literally two things at the same time on some level.

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Just (((hugs)))

 

And I hope you can find a special needs parent group. For me, it is amazing to be with people who just 'get it,' who never start sentences with, 'Why don't you just...' People who will understand when your child accomplishes little things that they are really big milestones.

 

The NT comparisons are hard, and they will hurt. You are not alone there.

 

I hope you find a good school for your dd. I remember how the last one had a lot of problems. But the right school can be wonderful. I found a program for my dd, and she is thriving. But I am glad we did ms at home -- it brought us so much closer together and gave her the courage to go out into a bigger world.

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He sounds like a sweet kid and loved family member :)

 

I think those things like "mild" or "severe" do have a subjectivity.

 

Maybe the person scored him so you would be in a position of having a lot of options, and being able to pick and choose.

 

It is better in its way than finding out you have few options or that you would like to try something else.

 

There are not enough hours in the day to do everything that my son qualifies for.

 

Like -- he qualifies for speech, OT, and ABA.

 

I had situation recently where I was kind-of scolded by somebody for not having my son in private speech therapy, when it would be covered by insurance.

 

There is just not time!

 

It is just -- if you get told "40 hours of ABA" and then you also want to do speech and OT and maybe swim lessons or gymnastics or horseback riding (all popular in my town) then there are literally just not hours in the day, and then you are figuring out what makes sense and priorities and how you want to set things.

This is so true!

 

I suspended OT and private ST when we were finally able to get ABA funded. I did add back in speech therapy after the discovery of the hearing loss because the ABA clinic doesn't have expertise in articulation, auditory discrimination, and other deafness-related issues. But going to the specialized clinic required cutting a full afternoon's worth of ABA.

 

I put off getting on the Scottish Rite waiting list for several reasons, and a big one is a full schedule. SR is closer than the speech clinic, but it would most likely still require cutting back on ABA from 4 to 3 days/week.

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I am turning down time of one-on-one (quality) tutoring at school in favor of social opportunity/language exposure.

 

I am also turning down the option of more hours of ABA during school hours in favor of the social opportunity/language exposure.

 

But pull-out can be an option.

 

But even when I am in a situation where I could be choosing pull-out, I am picking not to pull out all that is possible according to what my son qualifies for.

 

It is hard when the choice is between two things that are both good.

 

I think that in the Fall I may cut one day of after-school ABA to try a gymnastics class. The ABA therapist thinks it is a good idea.

 

I am a nervous Nellie now, and I don't know if I have the nerve to start him without support or not. The place he would go has a great reputation for autism, so it seems like it is a good option for the Fall .

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Crimson, get you get a tutor to go to her school program and do a pullout?

 

My DD is considered "at risk" for a reading disorder but she's not technically below grade level and therefore does not qualify for IEP services in reading. I would like to have her do Fast ForWord through SR since they offer it free for their clients. The school has her doing Lexia, and while that's probably helpful, it's not targeting auditory processing like FFW would.

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