Really doing it...

Micelle78

After our last discussion right before Thanksgiving, DH agreed that it was time to go ahead and do the official evaluation for autism.  He just told me his resistance is totally out of fear and knows that its the right time (DS is 4)  DH wanted to see if therapy would *fix* it all but its hard to deny that not everything looks normal two and a half years after starting speech, OT and recently vision therapy.  It feels good we are on the same page now and I can tell DH is happier and he even used the "A" word a few times as if its not completely unreasonable to think its what it is.  I think its a relief to us both to be close to hearing an official dx.  It may make the future a bit easier to plan.  Thank you to those that were patient with me in my choice to wait this long.  He has been getting all the therapies I listed and also going to preschool twice a week, so we were not denying there was stuff going on.  My school district insurance is so good that I don't need a dx or pedi referral to get private therapies (not sure if anyone does).  So we have plugging away on those since he was only 2 and had only 5 words.   

Anyway, our official intake for parents only is January 27th. The actual observation has no date/time set yet. I have sat and stared at this guy's online profile and his credentials hoping that this is a person that will be able to answer my questions.  After talking to the SPED teachers at my school, apparently this is the "it" guy to have dx.  My pedi backed up this opinion.  We live in a medium sized city so I do not have a ton of local options.  My pedi said its not necessary to go all the way to Seattle.

I feel both excitement and a fear DH will panic and refuse to go the day of.  I am planning on taking a personal day and maybe having lunch with DH.  The appointment is not until 3pm.  I feel overwhelmed with how much info I should write down ready to say.  These packets I filled out seem pretty vague because they are not really asking all the things I thought they would.  One is the BRIEF-preschool version and the other is Child-Behavior Checklist for age 1.5-5years. 

They also sent their own paperwork and questions.  There is also some pretty heavy questions on that one like--- What concerns you most about your child..... Well let's see, how much time do you have??

hopecounts

I am glad things are moving forward in a way you are both comfortable with. Have you looked into ABA, floortime, and/or Social Skills therapy yet? If it is ASD then getting therapy for that and not just the 'symptoms' is a huge tool in helping your child be as successful as possible and there may well be wait lists for the best options.

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bumpuser511563

I am glad you both are going through the evaluation process!

This brings back so many memories of evals with EI when DS was a baby and our current private behavioral therapy place when DS was almost 3. DH was insisting there was nothing wrong.

I don't think I asked DH's opinion in evaluating DS. I just did it with or without his consent and support but I did all the leg work in the beginning.

Micelle78

Sailor Saturn said:

I am glad you both are going through the evaluation process!

This brings back so many memories of evals with EI when DS was a baby and our current private behavioral therapy place when DS was almost 3. DH was insisting there was nothing wrong.

I don't think I asked DH's opinion in evaluating DS. I just did it with or without his consent and support but I did all the leg work in the beginning.

Thanks everyone. Yeah it's been me getting all the evaluations done too. My mom gut always knew. Dh never stopped me but wasn't supportive until he met each therapist and watched a session. Ds also got services from EI for a while too.

So over and over getting evaluated by different people is heart wrenching to Dh and he declared more than once he can't hear it one more time. The vision evaluation put him over the edge last year.

He knows that this one is really important.

Micelle78

hopecounts said:

I am glad things are moving forward in a way you are both comfortable with.
Have you looked into ABA, floortime, and/or Social Skills therapy yet?
If it is ASD then getting therapy for that and not just the 'symptoms' is a huge tool in helping your child be as successful as possible and there may well be wait lists for the best options.

This is totally what I am worried about. The services we are using may not be exactly what the doctor will suggest. We have been treating the symptoms and based off my observations.

We started with speech, then ot when I noticed gross motor stuff and then feeding therapy when I told her that I can't get him to eat anything, then vision when she noticed an eye turning in during fine motor activities and resistance to those.

bumpuser511563

Micelle78 said:

I am glad you both are going through the evaluation process!

This brings back so many memories of evals with EI when DS was a baby and our current private behavioral therapy place when DS was almost 3. DH was insisting there was nothing wrong.

I don't think I asked DH's opinion in evaluating DS. I just did it with or without his consent and support but I did all the leg work in the beginning.

Thanks everyone. Yeah it's been me getting all the evaluations done too. My mom gut always knew. Dh never stopped me but wasn't supportive until he met each therapist and watched a session. Ds also got services from EI for a while too. So over and over getting evaluated by different people is heart wrenching to Dh and he declared more than once he can't hear it one more time. The vision evaluation put him over the edge last year. He knows that this one is really important.

My life would have been easier if I got DH to go to therapy appointments earlier for DS when he was a younger.

DH started going when I could not take time off from work. The private therapies increased and DH realized DS had delays that can only be met with therapies.

lite-bright

Good luck. RDI is another option to explore -- we chose that as our core therapy for DD1 right after her dx and it was a cost-effective option when ABA was out of reach for us. 

Man, this whole dx process and the emotional processing that goes along with it is just tough. I'm glad you guys are more in sync now, and that you've been going ahead with services even if the dx process wasn't the priority. The services are way more important, IMO, and even if a dx is helpful in defining those, it sounds like you guys have been working on meeting his needs and that's great. 

My DH is the one who took DD1 to her evaluations while I stayed home with DD2, and it was very eye-opening for him. I think it was really important in having his buy-in. It took awhile -- he was very much on that every-kid-develops-differently, this-is-all-typical train for awhile, and would every once in awhile bring up some example of how his nieces and nephews were supposedly doing the same things as Sophie and how it was all just normal. By the time we got to the eval stage he was a bit more open to the idea that she could get a dx, and observing the evals sealed it for him. 

I mean, I sent him knowing I could trust his logical and scientific side to be honest in the paperwork he filled out during the eval, and I'd already filled out a bunch of it as well, so I knew that 1) he wasn't going to present a picture based on complete denial and 2) even if his take was a bit rosy, my input was already on record. 

He's kind of the odd man out for attending and being an active, informed advocate for DD1 in her IEP meetings -- he sometimes thinks the team dislikes him because they tend to talk directly to me, lol. It might only be a few times a year that he's able to engage like that because I handle the day-to-day stuff, but man, having someone you can 100% rely on to back you up, and a second parental voice in those meetings, has been a real boon. 

All that is to say, I hope your DH surprises you and holds steady rather than panicking. 

As a side-note, I spent much of our holiday party this weekend talking to some friends about ASD -- they have a friend with a son who has some big red flags and wanted to perspective on if/how they should bring anything up. And in the course of that conversation, they shared that they went through the same struggle when my DD1 was young, because they recognized some of the same traits. It's just funny. I thought I'd dropped a bomb sharing her dx when ASD came up in conversation a couple of years ago, but they'd had suspicions for a long time. And in the timeframe that they were worried about bringing it up, we already had a dx and been doing therapy and services -- it just was something we weren't (still don't) share willy-nilly and it hadn't come up naturally. Just goes to show how little you sometimes know about what other people are thinking/doing. 

hopecounts

It's fine. You'll start once you know more and go from there. 
This is also why having a Dev. Ped. will be so helpful, s/he will be looking at the whole picture and help you come up with a plan that best fits your son. 
You're doing fine, keep on keeping on

And  yes RDI is another option that could be a good fit, I just forget about it because there are no providers in my state. 

Micelle78

lite-bright said:

Good luck. RDI is another option to explore -- we chose that as our core therapy for DD1 right after her dx and it was a cost-effective option when ABA was out of reach for us. 

Man, this whole dx process and the emotional processing that goes along with it is just tough. I'm glad you guys are more in sync now, and that you've been going ahead with services even if the dx process wasn't the priority. The services are way more important, IMO, and even if a dx is helpful in defining those, it sounds like you guys have been working on meeting his needs and that's great. 

My DH is the one who took DD1 to her evaluations while I stayed home with DD2, and it was very eye-opening for him. I think it was really important in having his buy-in. It took awhile -- he was very much on that every-kid-develops-differently, this-is-all-typical train for awhile, and would every once in awhile bring up some example of how his nieces and nephews were supposedly doing the same things as Sophie and how it was all just normal. By the time we got to the eval stage he was a bit more open to the idea that she could get a dx, and observing the evals sealed it for him. 

I mean, I sent him knowing I could trust his logical and scientific side to be honest in the paperwork he filled out during the eval, and I'd already filled out a bunch of it as well, so I knew that 1) he wasn't going to present a picture based on complete denial and 2) even if his take was a bit rosy, my input was already on record. 

He's kind of the odd man out for attending and being an active, informed advocate for DD1 in her IEP meetings -- he sometimes thinks the team dislikes him because they tend to talk directly to me, lol. It might only be a few times a year that he's able to engage like that because I handle the day-to-day stuff, but man, having someone you can 100% rely on to back you up, and a second parental voice in those meetings, has been a real boon. 

All that is to say, I hope your DH surprises you and holds steady rather than panicking. 

As a side-note, I spent much of our holiday party this weekend talking to some friends about ASD -- they have a friend with a son who has some big red flags and wanted to perspective on if/how they should bring anything up. And in the course of that conversation, they shared that they went through the same struggle when my DD1 was young, because they recognized some of the same traits. It's just funny. I thought I'd dropped a bomb sharing her dx when ASD came up in conversation a couple of years ago, but they'd had suspicions for a long time. And in the timeframe that they were worried about bringing it up, we already had a dx and been doing therapy and services -- it just was something we weren't (still don't) share willy-nilly and it hadn't come up naturally. Just goes to show how little you sometimes know about what other people are thinking/doing. 

Dh only supported the slp because his claim was that he saw the progress and other therapies were not doing more than he felt maturity was responsible for.

He has taken ds to speech for over two years because he has Fridays off and I am a teacher. In the summers I take him.

Thanks for the story about your friends. When ds was 18 months I got the impression from my brother that he was waiting for me to bring up my concerns. I don't think that he wanted to be the one to tell me there were red flags. He is an audiologist so his BS degree is in speech and hearing. In fact he helped during ds' s hearing check to rule that out before going to an slp

Micelle78

Side note myself about dh. I have mentioned it before but dh has bipolar disorder and anxiety so he has been evaluated a lot in his life. Some of this is PTSD of the doctors he saw during his life while he tried different meds and had a strained relationship with parents who told him he was a bad kid and not understanding his random aggressive behavior and anxiety

Micelle78

Thanks everyone. It feels kinda surreal right now. Dh is actually ok about it and I filled the paperwork out and mailing it tomorrow. It feels so weird. Thanks for the support