And we have a diagnosis

bliss611 · February 2014

The IEP meeting is in two weeks but the psychologist called me today to go over the reports (which I still don't have a copy of). DS is on the ASD spectrum, "mild form" as he described it. All the therapy he rattled off is a bit overwhelming (PT, OT, speech, and group therapy with a psychologist for his anxiety issues) but makes sense. We have to wait for the IEP meeting for a time line on when he can start all this.

Weirdly enough a part of me is just relieved with the dx because now there is an explanation for the difficult two years I've had being home with DS. Otherwise I felt like his behavior and the lack of intimacy and progress was somehow my fault. Also very overwhelmed because I am supposed to be going back to work soon and this is going to make it more of a juggling act that I was expecting.

chardonnay24 · February 2014

We just got a diagnosis today, too. I feel the same way. I've spent the last couple years really blaming myself for his behaviors, or at least wondering if I had something to do with it. "Maybe he hits because I'm not consistent enough, maybe he is aggressive because I yell at him too much, maybe he doesn't play with other kids because I didn't encourage imaginative or cooperative play enough, maybe his speech is behind because I don't speak to him enough, maybe if he had a different parent, he would be a totally different child". It doesn't help that he does behave better at school than at home.

I actually don't work because it is really difficult to do everything. I'm sure that if I had to, we could make it work, but even SAH, I find it really hard to keep on top of school, therapy, evals, IEP meetings, and just taking care of him (and taking care of myself). It's hard. Good luck!

joshsmandy · February 2014

It may be a juggling act but you got this, no worries! I know exactly what you mean by being relieved with the diagnosis, sometimes you just feel better having an answer and knowing that your struggles and your worries are for the better. (Hugs)

bliss611 · February 2014

I quit work two years ago to stay home because of his drastic anxiety at daycare. We thought it was separation anxiety and he would grow out of the fear so I used the time to take some courses and certification exam to change careers. So now I have to go back soon or lose my chances at certification and waste all that work. And we can really use it financially too.

See how it goes - 1 thing at a time.

I am going for a medical dx next as well - keep in touch about the process!

rtecordner · February 2014

From someone who is now 8 years out from the diagnosis, my best advice is to just take one day at a time. Our motto at home is "every day is a new day." I remember getting the diagnosis when our son was 5 and we just felt so relieved to know what we were dealing with and that we had a path to follow. I know it is all so overwhelming, but take a deep breath and give yourself a little time to take it all in and don't blame yourselves! I'm Guilty!! Still do it sometimes, but I know it just is what it is. We have been blessed with great teachers and have a huge special needs community that we are very involved with. That has helped us so much!!!
Don't know if you've done IEP meetings before, but don't let anyone intimidate you or not give you information that you need. You are in control and are your child's advocate. Knowing your rights is important and will give you such a sense of calm when you're sitting at that table!
Hang in there! Even though it is not an easy one, you are on an incredible journey. I'm constantly amazed at how far we have come and what an incredibly special young man my son is turning into! Wishing you the best

kcisthebombdotcom · February 2014

Were in the same boat--dd has the same diagnosis and was diagnosed just two months ago. I too felt a sense of relief in a way.

lite-bright · February 2014

The therapy recommendations can totally be overwhelming. Some of the best advice I got was from our pediatrician -- she said it was OKAY to take some time, like a couple of months, to do research and interviews to set up a therapy regimen and choose therapists rather than just jumping on the first thing available because you feel urgency. (This is more applicable to private therapy than school services.) And it turned out that we opted not to go with ABA, which was recommended to us, because of cost and not feeling it was the best therapeutic fit out of the options available. We picked RDI instead, after a ton of research and interviews.

Autism Speaks has a good 100-day kit that was helpful to me in how to get started and what to do in the first 100 days after getting the dx. I also kept a notebook and recorded every single thing I did -- every agency or therapist I contacted, every email I sent, every phone call. It really helped when the wheels seemed to be turning slowly, in reminding me that I was doing everything I could/should be doing.

We're here for questions! Many of us have been where you are.

bliss611 · February 2014

Thank you rtecordner. I am actually curious what happens at the IEP. From what I can tell from the CPSE website, a lot of people are involved so it does seem a bit intimidating. Thanks for the heads up to be prepared and stand my ground.

bliss611 · February 2014

KC13 - it seems there are a few of us at the same point in the process. You, however, seem extremely knowledgeable about the whole thing. Any tips and resources?

Also, does your DD have a medical dx yet? Outside of the IEP, that's my next step.

bliss611 · February 2014

thanks lite-bright. I am looking at the Aspergers and High Functioning Autism Tool Kit from Autism Speaks as I write this. It seemed like a better fit.

DS dx is mild type ASD. And the psychologist did mention that the guidelines changed recently. Otherwise, a year or two ago, DS's diagnosis would probably have been PDD-NOS.

So many terms and many not actual diagnoses anymore. SO confusing.
You mentioned ABA and RDI and they mean nothing to me. So much to learn I guess.

Thanks for the advice about taking the process slow. It is tempting to go quick and try to fix it ASAP but gathering info is the most important thing right now.

kcisthebombdotcom · February 2014

bliss611 said:

KC13 - it seems there are a few of us at the same point in the process. You, however, seem extremely knowledgeable about the whole thing. Any tips and resources?

Also, does your DD have a medical dx yet? Outside of the IEP, that's my next step.

We actually only have a medical diagnosis from a developmental pedi. The psych testing did not put her on the spectrum and the school isn't buying the dx. As of tips I ditto lite-bright on the 100 day info. Were still in that process. It's lots of waiting for Katie Beckett to go through so we can get on the list for therapies. Were still not actually sure what were going to do in terms of private therapy ourselves--were getting pretty intensive supports from our school department so were just waiting and seeing how that plays out. I'm thinking were going to skip aba and do additional social skills therapy, hippo therapy and speech outside of school since as of right now dd only has difficulties in language and social skills. I'm still probably going to get on the waiting list for an aba therapist just in case DDs progress starts slowing down.

Assembly_Reqd · February 2014

Not an ASD mom, but Welcome!

bliss611 · February 2014

Than you so much! I am SO glad I found this board!

I have a silly question. As I read more about this it seems many terms are used interchangeably and I don't see ASD online nearly as much as I see other terms. I am just trying to narrow my reading because there is a lot of info out there. And with the terms, I was even confused on which tool kit to get from Autism Speaks.

Would the "mild" ASD dx DS got be the same high functioning autism?

kcisthebombdotcom · February 2014

bliss611 said:

Than you so much! I am SO glad I found this board!

I have a silly question. As I read more about this it seems many terms are used interchangeably and I don't see ASD online nearly as much as I see other terms. I am just trying to narrow my reading because there is a lot of info out there. And with the terms, I was even confused on which tool kit to get from Autism Speaks.

Would the "mild" ASD dx DS got be the same high functioning autism?

Per the new dsm v different levels are given to illustrate the level of support the person would need. High functioning vs low functioning is more related to iq and doesn't necessarily reflect how well the person would function in society.

bliss611 · February 2014

Thanks KC13 & auntie.

I didn't understand HFA was based simply on IQ. It very much sounds more like an adaptive measurement. Good to know that.

I don't recall if I mentioned it in the post before - the psychologist did say that a couple of years ago, DS's dx would probably have been PDD-NOS. It didn't mean anything to me at the time but now with the background you provided, auntie, it makes a lot more sense.

HFA technically would fit DS. I think he scored a 80. But I am far more concerned about adaptive skills at the moment. I'm going to download the autism guide as well.

Thanks again for the info. I'm waiting on my book orders from amazon to show up. The weekend and the weather are not helping. So, I keep asking my questions here

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