How long did it take after being diagnosed to feel like you had a plan and

[rafiki]

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[Tokyomarie]

When we went through our evaluation last year, I was overwhelmed at first- and I was only working with one child, though that child was an uninvested teenager. I found it helpful to just get one thing going, then add the next thing after we had established the first routine. For us, that was first a reading tutor, then adding a writing tutor/academic coach after about 6 weeks. Later, we did a developmental vision eval which helped us to see some issues, but opted not to add therapy because my son was not at all invested in the idea and we all felt like we already had too much going on. Now that we've been with the two tutors for a year, I am revisiting some things we didn't do last year.I feel ready to peel back another part of the onion.

 

Choose the one thing that seems to be the biggest concern and start with that first.

[peacefully]

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[simka2]

No answers just hugs!!!! I am in similar boat. We just got one started on meds and I am researching like crazy. Now, that things have calmed down in his dept, my dd issues are coming back to the surface.

 

I am just choosing to baby step it and "do the next thing." :confused:

[Dobela]

No answers just hugs!!!! I am in similar boat. We just got one started on meds and I am researching like crazy. Now, that things have calmed down in his dept, my dd issues are coming back to the surface.

 

I am just choosing to baby step it and "do the next thing." :confused:

I have 2 with special needs and I constantly feel like I get one settled just in time to work on something with the next one.

 

For me things didn't start settling down much until we started making it thru more therapies. In the early stages of therapies their abilities and needs changed dramatically making me feel like I was on a merry go round of sorts. After we were in therapies for a long time we began working o the nitty gritty, hard to solve skills and then I could start making long term goals.

 

If you can plan a park date or something where the kids can go off and play while you and dh sit at a picnic table and talk, those can help bunches. Or at least they do here. When I am overwhelmed, I make dh stay home with the kids while I head to a local coffee shop or the library for quiet research and reflection. All By Myself. Sometimes I take kid stuff to review and work on but I have also found that sometimes what I need most is to just sit, read a magazine or knit, and focus on something else for a mental break.

 

I understand not wanting to tell anyone out of the house about the kids. Some people are not helpful. Some people will use this to jump to wrong conclusions about your kids or judge the parents. But, I would consider asking dh if you can find one or 2 people, or possibly even a support group somewhere. Then it is called networking and you don't have to reinvent the wheel. Networking a little is how I found my favorite therapists and learned of some great local activities that work well for my kids (that were not advertised).

 

Trying to make a homeschool plan while doing multiple therapies is hard. Last year I put my son on a video curriculum even though it was more expensive, and probably not the most effective, way to learn. It was however the most efficient and the most freeing for me. As I begin more direct, slightly more structured work with dd next year I will still use some video curriculum with ds, but I will have to focus on some subjects 1-1.

[specialmama]

Michele, you've received some wonderful advice. Let me just underscore the importance of having a support system and taking time for yourself. Don't be supermom. I burnt myself out and had a nervous breakdown. In answer to your question, it took me about 4 months to have a game plan set in motion, but those first few months were so draining on me. I didn't feel it at the time, but it built up and then I was a wreck. The best advice I've ever been given as a parent of a child with classic autism, is to take time for you even when you think you don't need it, because honey, by the time you realize you need a break ~ a little bubble bath or evening out ain't gonna cut it. Do get out alone. Often. And do find those who love you and talk to them. Do find a support group in your area.

 

I don't know of your dh's reasons for not telling people, but I think he needs to consider the HUGE cost to your mental health and therefore the well-being of the entire family if this is kept hush-hush. There is nothing to be embarassed about if that is his reason. Judgement? Who cares what others think. Honestly, most people know somethings up anyway, because they see dc's behaviour. And if they think you're a)not aware b)in denial then it only looks bad on the parents and the parents are judged. I don't know if that makes sense or not, I don't think I'm explaining it properly. But I know the whole judgement thing backfires way more than people think. I just hope he'll reconsider out of concern for you and the entire family. This is so stressful and you need support. For what it's worth, you are not alone and it will be okay. :grouphug:

[Murmer]

 

Dh doesn't want anyone knowing, not friends or family.

 

 

 

I just want to say that having a name for what is going on with our dd and telling people has been incredibly helpful. It has given people a way to look at my daughter through the eyes of a disability and not just a normally developing child trying to be naughty. It makes it so that rather than hearing how naughty my child has been, hearing how great she is doing because the expectation was far worse than how she is doing especially on medication.

 

That said I feel only now 6 months after an official diagnosis and 6 months of Special Education, behavioral therapy, and Occupational Therapy do I feel like I have a plan. But we have a lot more to do and she has come a long way.

[RamonaQ]

My guess is that eventually your dh will shift on letting people know. Likely he is still in the shock of all that has been diagnosed. Plus, he needs to deal with it in his own way.

 

Personally, I would probably share with a very close friend, have a good cry, and then start moving forward. That is kind of what I did after the diagnosis and read the report (Does it count that I still cry sometimes when I read the report? It can still feel so overwhelming).

 

Anyhow, for me it was about a month of fretting and worrying and feeling upset. Then I just fell apart, and dh suggested that then we need to bring in more resources. We hired a tutor (as suggested in the report that was trained in a remediation program that was also suggested in the report).

 

It has been the best plan and thing we have done for the education of our son. I mean homeschooling is great but the tutoring has moved mountains and has given me someone else who is "part of the team". I realized I was originally so upset because I felt very alone trying to figure this out. It has been so nice to have someone else regularly thinking about the way forward.

 

We are wrapping up tutoring now (it was a fast 8 month stint) but I have realized the important lesson in getting help and having a team.

[SweetMissMagnolia]

:grouphug: can relate to some of that-sometimes I feel like I'm the only one DEALING with it too...Hubby works different hours alot of the time-his schedule changes basicly every 3-4months...I'm the main one who does homework with him-takes him to dr visits-is the major discaplinarian....it's hard....at first I didn't think hubby wanted to accept things but now as time has gone on I think he does...As far as having a plan LOL...I don't know if I have one LOL...supposedly we have a "plan" with his behavior therapist on things we want to address and hopefully work toward correctly or things to do to make the issues more tolerable.....but as far as a personal plan I don't know if I have one LOL I have good intentions to get things "mapped out" but then real life gets in the way....

[rafiki]

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[Joyofsixreboot]

:grouphug: dh still doesn't admit there is anything different about ds. I read until my eyes about fell out and eventually realized he's still my ds and we can only do our best for him. I can make it better but not all better. That probably took me a year to get to.

[Finnella]

Lots of wonderful advice. I have two sons, but only one of them is on the spectrum. He got diagnosed after I'd already been totally disabled for a number of years. I don't know after two years if we still have a plan.

 

We do target what's currently worst to work on and go from there. That's also how I prioritize my research and long reading list.

 

My DH was in denial for a few months but he did come to accept it. I do believe that you should be very strategic in picking the people you tell about the diagnosis. For example, we have not and will not be telling any extended family members. (The level of dysfunction there is epic, plus my MIL believes that anything a psych can diagnose can be prayed away.) But our close family friends all know.

[amo_mea_filiis.]

(The level of dysfunction there is epic, plus my MIL believes that anything a psych can diagnose can be prayed away.) But our close family friends all know.

 

I know this isn't funny, but it made me laugh a little. Just yesterday my mother pulled out "this new book I'm (she) reading to see how we get rid of this autism thing". For once, the book couldn't explain it. She says it has to be related to the spirit of rejection and is always praying to cure the generational curses that absolutely must be ds's issues. I'm not sure I'll ever let my mother know the extend of my non-belief! Pray away, and I'll even join you, but ds is staying on his asthma meds, and is going to continue his therapies regardless of how many times these demons are banished!