Support...

[mamashark]

How do you handle the stress of waiting for and then receiving answers from a behavioral evaluation?

 

We go tomorrow for our results meeting and I'm finding it quite difficult to release the tension... my muscles ache from working out so hard in the last 2 days trying to forget everything, and I'm living with a near constant headache. When I snapped at my husband this morning over something stupid I realized I'm not handling this well.

 

I'm afraid that she will tell us he's "fine" like his old pediatrician told us a couple years ago, and yet she already told us "he's got anxiety and some other stuff going on", so I know she's seeing SOMETHING, but I know it's more than anxiety and yet I feel like I'm overreacting to assume it's autism. And yet everything I'm seeing seems to point to autism. And yet that's a pretty serious diagnosis and means a huge shift in a lot of life... and yet it's not a huge shift because we are already trying to figure out what supports he needs to be successful and we need help with that, thus the evaluation...

 

I'm going to go crazy I think.  :(  :banghead:  :crying:

 

I am out of wine. I need more I think.

 

Oh and it doesn't help that we had to take him to the ER a couple days ago for partial face paralysis - turns out he has Bells Palsy and it was the most stressful ER visit I've ever had. He curled into the fetal position and refused to cooperate. Crying and screaming and fighting and in such a tight ball they were ruling out a stroke based on his ability to fight to stay curled up. There was a rocking chair in the room and while we waited for discharge paperwork, with the lights turned off, I watched him banging his head against the rocking chair to rock himself as he calmed down and I just wanted to curl into the fetal position myself and cry. The nurse took extra time to make sure I was ok, and to tell me that it was going to be ok. But I'm having trouble believing that last part. Is it really going to be ok? How do you do this? 

[nature girl]

:grouphug:  I'm so sorry, I know so many of the parents here can relate. This really is the hardest part, I think. Once you have a diagnosis, whatever it is, you might spend a couple of days in shock and then you'll absorb and adjust. And in a week, or two, or ten, you grow and it's part of your life. And you're grateful to know so that you can move forward.

 

The most useful advice I got at this stage (I think it was from OhE) was that no matter what you learn, he will still be exactly the same amazing boy you love, that doesn't change with a diagnosis. He IS the same person, the diagnosis doesn't take that away. And with a diagnosis, you'll be able to get the right supports to give all of you a good life. He'll have the support he needs to learn to deal with his anxiety and any other issues he may be facing so he can have the life you want for him.

 

Drink, cry, scream, whatever you need to do is good, and understandable and even healing. You can get through this, and you're not alone...

[PeterPan]

You're doing better than I am. I was sick to my stomach and half insane those first times through.

 

Go out to eat and watch idiotic movies. Just get through it. I don't think they're going to tell you there's nothing going on. If they do, they're related to donkeys and you go somewhere else. But with what you're describing, there's no way. Yes it can happen, because we have a hard time getting enough people seeing these behaviors to get it flagged on forms. But hopefully that doesn't happen.

 

Have you made your question list? Write/type it all out, with spaces between each question, so you can write the answers. You have a support person to take with you? You have childcare lined up? Don't take your dc unless they said to. Are you planning to eat out afterward so you can take some time to process and come back to a calm place? That can be a good plan.

 

If you were here, I'd watch Trolls with you and feed you lots of chocolate and cheesecake. It only happens once, so just do it. Make a pan of brownies and eat the whole thing.

[PeterPan]

So what's the scoop on the Bells Palsy? They do referrals for that? I just did genetic testing on my ds, because I was trying to hunt down funky things. You might pursue that at some point just to see. Or just google BP plus autism and see what you get. Might help unlock things if he's kind of atypical or having patterns that don't make sense.

[mamashark]

You're doing better than I am. I was sick to my stomach and half insane those first times through.

 

Go out to eat and watch idiotic movies. Just get through it. I don't think they're going to tell you there's nothing going on. If they do, they're related to donkeys and you go somewhere else. But with what you're describing, there's no way. Yes it can happen, because we have a hard time getting enough people seeing these behaviors to get it flagged on forms. But hopefully that doesn't happen.

 

Have you made your question list? Write/type it all out, with spaces between each question, so you can write the answers. You have a support person to take with you? You have childcare lined up? Don't take your dc unless they said to. Are you planning to eat out afterward so you can take some time to process and come back to a calm place? That can be a good plan.

 

If you were here, I'd watch Trolls with you and feed you lots of chocolate and cheesecake. It only happens once, so just do it. Make a pan of brownies and eat the whole thing.

 

Thanks. I need to write my questions down, I forgot that. My husband is coming and he's completely on board now, even marking some behaviors higher than I did.

 

Yes lunch is planned and childcare is lined up.

 

 

 

 

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[PeterPan]

The other thing to think through is who you're NOT going to talk with this about when you get the results. It's almost as important and who you *do* talk with. Self-protection is going to be key pretty soon. 

[mamashark]

So what's the scoop on the Bells Palsy? They do referrals for that? I just did genetic testing on my ds, because I was trying to hunt down funky things. You might pursue that at some point just to see. Or just google BP plus autism and see what you get. Might help unlock things if he's kind of atypical or having patterns that don't make sense.

 

My ped. thought it was based on the symptoms I gave her over the phone. The ER dr. essentially diagnosed it from a picture and my descriptions. He had a high fever/virus a week ago that lasted 24-48 hours. then some basic ear pain but no ear infection. then half his face was droopy and one eye wouldn't close. Now he's on high doses of prednisone and he's bouncing off the walls - his fits have decreased as well, so I'm enjoying the decrease of the oppositional behavior - but it has increased his appetite without impacting his willingness to eat anything other than hotdogs and apple sauce. And heaven forbid if I accidentally get ketchup on his bite before he is ready for it. and he still slept on the floor next to my side of the bed last night.......what age do these kids actually sleep through the night in their own beds?

 

I was referred to an ear nose throat dr. who wanted to make sure he was on high dosages of steroids and his pediatrician also wanted him on the high dosage of steroids... so everyone is in agreement and no further follow up necessary unless his improvement isn't full/continuous. 

[mamashark]

The other thing to think through is who you're NOT going to talk with this about when you get the results. It's almost as important and who you *do* talk with. Self-protection is going to be key pretty soon. 

 

I don't know how to handle this issue. 

 

My mother-in-law has told me flat out that there is nothing wrong with my son other than my parenting (she blames it all on me, absolving my husband of any wrong-doing). She even flat out told me that she wishes I would just listen to her and start spanking. (wanna know what happened when we spanked him? An hour later my husband and I were still taking 10 minute intervals to keep him from harming himself in his room with the door closed while the other kept the other kids away from the room. I think we both had bruises from that experience. That was a year ago.)

 

She knows he's being "evaluated" because he is still not fully potty trained and she knows we can't get him to go to his classes at church. BUT. She's the one keeping our kids. Our other babysitting option fell through and so she's keeping them. We already declined her dinner invitation for tomorrow night. I also told my husband that I would walk out on her and wait for him in the car if she tells me that the diagnosis is wrong, whatever the diagnosis is. 

 

*Sigh* she seems to be coming around, so I'm just praying for her to have mercy on me and work on the ability to hold her tongue. 

[PeterPan]

Yes, it's a known phenomenon that kids with autism will have symptom improvement with fevers. Enjoy it while it lasts, cuz it's really stinkin sucky when it returns, BAM, all at once.

 

That's really good that the BP is treatable and possibly a one time thing, whew! My ds turns out to have a gene for really slow metabolism of caffeine and a bunch of other things. Sometimes that's common too, so it might not be your imagination that maybe he's kinda hanging on longer with the meds in his system. Roll with it and keep him safe. Use some sensory input or OT techniques to maybe help calm his body down. If he'll play apps or something calm, might be the time to bust them out. Whatever keeps him safe.

[OneStepAtATime]

:grouphug:

 

 

[Lecka]

I hope your MIL will be sensitive. My MIL took probably a year to get over her own denial, but she didn’t bring it up to me, and she wasn’t providing childcare, so it wasn’t as much of an issue!

 

Just to be positive and look at the bright side, sometimes people who “don’t believe in labels†can be great in every other way. Maybe they aren’t supportive in some ways, but they can be champions of your child anyways.

 

I have also heard a few times, that sometimes when a relative is resistant, it is because there is another family member with similarities, and either it is something they are used to, or else they remember a time when the stigma of autism was much greater and they think it means kids don’t have a loving and involved mother. Which is ridiculous! But that is what autism used to be like to people. It has changed a lot and not everybody can be current.

[OneStepAtATime]

More hugs.

 

I agree with Lecka, MIL may come around eventually regardless of what the diagnosis will be.  It can take time.  Also, yes it was commonly believed at one time even in the medical/mental health field, that autism was caused by poor parenting, especially from the mother.  I remember vividly as a teen when our across the street neighbor came home with her husband one day looking like she had been crying.  Turns out their son had been diagnosed with autism and she had basically been told flat out, right in front of her husband and child, that it was her fault.  It devastated her.  And of course was not true.

 

My parents and my in-laws are great people but they definitely had very strong preconceived notions based on the era they grew up in.  It is hard to rewire a brain's basic code.  It can be done.  An old dog CAN be taught new tricks.  It just isn't easy.

 

It can also be somehow more comforting to think that it is someone else's bad parenting, something controllable, something that you can point a finger at and say "stop doing this, you need to do that" and genuinely think that will fix it instead of thinking it is some nebulous, hard to understand brain issue they were born with and will never truly go away.  

 

FWIW, DH frequently waffles between understanding what our two kids are dealing with both positive and negative and flipping to "you are a bad parent and this is all your fault".  Of course, he dealt with many of the same issues our kids are dealing with and it was HARD on him.  School was a nightmare.  I think guilt and fear trigger his attacks on me.  He knows there is a genetic component to the issues our kids have struggled with (not autism) and he doesn't want to be blamed, not even by his own conscience.  It still hurts when he uses me as his verbal punching bag and I absolutely don't put up with it but I do understand why he reacts the way he does.

[PeterPan]

On the MIL thing, yeah that's a mess. That's why I mentioned it, because it's not uncommon to have people like that in your life, sigh. Do you go on FB? There's a guy Autism Discussion Page who has written some books, blah blah. He's kinda weird, but his stuff is ok. Supposedly he's NT. I'm just not a super bandwagon lover of him for reasons I haven't pinned down. Anyways, he had a really helpful metaphor this week explaining it as driving a car and realizing who should be in the driver's seat and who is in the front passenger seat and who is in the back seat and who gets kicked OUT of the car.

 

So with his illustration, your mother is trying to climb from the back seat to the front, and she needs to either stay in the back seat or get kicked out of the car. And he's really right on this. You, the parents, are in the front seat and your ds is the passenger. Everybody else is backseat and needs to stay in their place. 

 

No it would be neurologically inappropriate to spank your child. Spanking is not across the law in our state and my church background is Ted Tripp, spank them, blah blah. We learned very quickly that spanking was absolutely positively neurologically inappropriate for my ds. He didn't have the cause/effect skill to learn from it (think about that, does your dc actually GET cause/effect?), and any physical input like that SO distressed him, so dysregulated him, that my ds was left wetting his pants multiple times a day for days. Your was left head banging and my ds was wetting his pants. But the cause was the same, severe neurological immaturity and an inability to cope and regulate with the input. 

 

So it would be UNCONSCIENABLE for you to spank him. Seriously. Your gut is telling you this, but when you get done with all these evals and get OT evals and get down the road and get your confidence on, you'll finally know why. I'm just saying, for now, you are right, there are definitely reasons why this was happening, and that you should NOT cave on stuff like that.

 

Ok, you are leaving the kids with her. So short circuit the mess and protect yourself. Like you and your dh go to the appt, you go out to eat and talk and decompress, then he takes you back to the house, then he drives up at the last minute and refuses to engage. It's his mother, so it's his problem to handle. 

 

You are within your right as parents to draw very firm boundaries on this. You could just say hey, we got the results, but it's complicated and we don't want to talk about it now. Or you could tell her surprise, it was actually a long make-out session. Or you could find some other way to pass the bean dip.

 

I had something I disagreed about with my mother, and she finally had to learn to let it drop. That wasn't as big as this issue. My personal strategy with people like that is the total blow-off: I'm following the advice of the professionals on our team. With further inquiries, rinse and repeat: I'm following the advice of the professionals on our team.

 

To me, none of my choices for my ds are up for discussion with any inlaws or relatives. None, none of the decisions with none of the relatives. *I* have to live with the consequences and *I* am the parent and *I* am the one responsible on every level (legally, morally, spiritually). 

 

You are entering a world where people feel inclined to give advice, and the more you make plans to protect yourself the better. Discuss it with your dh and have a strategy you can live with and stick to it. Personally, I like the surprise we were actually at a hot hotel and we might be pregnant next month option. Let your dh tell her that. :D

[PeterPan]

Sometimes what happens with inlaws is that they have their own baggage. Your choices are going to remind them of things they went through with their kids, etc. If you're lucky, they'll come around, sure. But you always want to be cautious with them, just because the genetics are there that one side or the other probably dealt with some aspect of this and has feelings about it.

 

My safest confidents are NOT blood relatives. They're people totally removed who are objective.

[OneStepAtATime]

Agreeing with PeterPan, come up with a plan for what you will and won't share and try to stick to that.  Right after an evaluation result is NOT the time for an in depth conversation, by the way.  Emotions are all over the place, you are most likely tired, stressed and need time to process, whatever the results.  I strongly urge you to only give the very barest of responses to MIL when you get your other kids back after the appointment and none at all to anyone else until you have had time to rest, eat, think, think some more, read the written report, think some more, etc.  And whatever you do, don't make any decisions until you have given yourself some days to process, whether you find out anything concrete or not.  

 

Just breathe.  Keep breathing.  And take this one step at a time.  

 

:grouphug:

[PeterPan]

The reason you don't have to talk with her right after ward, and the reason it's not rude, is because you need time to grieve. You're going to need time to process, and that's something not a lot of people need to be part of.

Edited January 17, 2018 by PeterPan

[mamashark]

I am sorry that I am not responding much, I am reading and absorbing everything and greatly appreciate everything everyone is saying.

 

And my husband brought home wine, so once the kids go to bed I am going to drink a glass and relax and go to bed.

 

 

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[Pegs]

Enjoy your quiet evening. That sounds like a great idea.

 

Let us know how you get on tomorrow. Whenever you're ready, of course. Nothing but support here.

[Lecka]

That sounds like a good plan :)

 

I also found — before I had a plan, I obviously had no plan. I was getting through the days as best I could.

 

After I had a plan — I came across like I had a plan, like I was handling things.

 

When my confidence was up in how I was handling things, I didn’t come across as needing advice the way I did when I didn’t know how to handle things.

 

When I can be matter-of-fact in sharing information then people are likely to follow my lead and see my confidence.

 

So — maybe it takes 6 months or a year — but I got used to it and then I know I both handled things better, and I also came across like I was handling things better.

 

And then I got more “you’re handling it†kinds of responses. It takes some time to build up a comfort level and a confidence level — but I was able to do it once I had some appropriate therapy and professional advice about how to respond in a really appropriate way that would be helpful to my son, and how to support him, etc.

[Storygirl]

I hope you are able to get some rest tonight. When we got the initial big testing results, I went into the meeting thinking that finally I would be getting some answers. And I got them. But I walked out of the meeting realizing that I had more questions than ever. Because, what now? It was a lot to process, and I realized that instead of the meeting having the feeling of final answers, it ended up being a beginning instead.

 

Just don't be surprised if you feel overwhelmed, whether the results are what you expect, or are different.

 

I suggest that you plan to not discuss it with your MIL. Send your husband alone to pick up the kids. Practice what he will say. Something like, "We got a report with a lot of information, and it's going to take time for us to go through all of it."

 

By the way, you probably know this, but you do not have to share your child's private medical information with ANYONE other than the child. Your MIL will want to know, but you don't have to share everything with her.

 

It's entirely possible that you will not get the written report tomorrow, and that they will send it in the mail. In that case, you have an easy out. You can say that you got some basic information today, but that you don't have the full report, so you aren't ready to talk about it yet.

 

Being not ready to talk about it should be answer enough for her. She may not accept that and may not be pleased. But you can choose not to talk about it until you are ready. And when you are ready, you don't have to share anything other than what you are comfortable with.

 

:grouphug:

[PeterPan]

Did you survive?

[mamashark]

Did you survive?

Ha, yeah, I did! Apparently the evaluation was not a full autism eval and so we have 3 more sessions set up to allow her to observe more behaviors. In the meantime she said his official diagnosis is anxiety. She thinks OCD and sensory processing issues explain most of his behavior and acted as if the actual label of autism is not terribly important, although she said on paper ( the stuff we filled out) it's there.

 

So I'm going to get him on a picture schedule at home, start observing for sensory triggers, get him into OT and bring him back for 3 more evaluation times where she wants to see him interacting with me and dad separately.

 

Lots to process and do, I'm still in info overload mode.

 

 

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[Lecka]

Glad you survived :) It sounds good so far, picture schedules are good for a lot of kids, it sounds like a good plan, and OT sounds good too :) Sensory triggers can be hard to figure out but over time things start to fit together.

 

I am going to share something I didn’t know about sensory.

 

My son went back and forth between overstimulated and understimulated, and it was hard for him to stay in the middle with good regulation.

 

So it would be confusing — i thought he was supposed to be overstimulated OR understimated, I didn’t know he could be both and so close together.

 

Then the next thing I didn’t know — he could have the *same* behavior and depending on the circumstance, the *same* behavior could be *overstimumated OR understimulated.*. I was looking for a behavior to mean one or the other, the same every time, and I didn’t know it could be one or the other!

 

So what happened a lot — he might sensory-seek, because he was under stimulated. But instead of reaching and maintaining a nice regulated state, he would overshoot and go into overstimulated.

 

So for example — he might be under stimulated and spin. Then he might spin and then shoot into overstimulated. Then he might be overstimulated and need to quit spinning, but not be able to figure that out and do it.

 

So I needed to know — is he really understimulated right now, or is he really overstimulated right now? And I thought “spinning means one or the other†(for example) and I didn’t know that it could just depend.

 

Now he is older and he is basically sensory seeking and he can do some sensory seeking — but it helps him to regulate. It doesn’t push him into overstimulated anymore.

 

He used to have a “mixed†profile where he was never really very sensory defensive/avoidant (he was a little with things like sun light and rain and wind, and some visual things like too much movement, but never sound and not really tactile), but he could get overstimulated pretty easily, by his own sensory seeking and lack of ability to regulate.

 

Anyway — ideally you can fill out a sensory inventory with OT and they can help you with this! There are a lot of different possible patterns and some OTs are really good with it :)

 

A lot of times anxiety and sensory defensive/avoidant go together, if that ends up being the case there is a lot out there for it. It’s not my son but I hear about it and I think there’s a lot of good suggestions out there :)

Edited January 19, 2018 by Lecka

[Lecka]

And this is not my son so much, but something I hear with sensory regulation and emotional regulation being connected....

 

With sensory defensive/avoidant and anxiety, the feeling of sensory defensive/avoidant can be the same (or similar I guess) physical feeling as anxiety. They can both feel like having a rising heart rate, shallower breathing, etc. So there is stuff for helping kids to consciously notice how they are feeling and consciously be aware of if they are starting to feel anxious but it is starting for sensory reasons.

 

But that is more advanced, older kid stuff, to get into them noticing on their own. But parents can help their kids do deep breathing and relaxation stuff even with younger kids sometimes.

 

It’s one of those things I think is interesting. I have been to hear several “parent information nights/workshops†by now, lol.

 

But anyway OT can help, a sensory inventory has been a first step for me and then people who are good at it can piece things together and it can be helpful :)

 

I am excited for you to start the recommendations, I hope they will go well :). It all sounds very good!

[PeterPan]

How old is he? The autism label is about access to financing for things you want. Yes, they'll do this kind of rolling thing where they start low and then in a few years roll up to the next and up to the next. The trick is deciding how pissy adamant you should be about actually getting the label. The label gets you insurance funding and opens doors. That OCD label is gonna get you squat. Not true, in our state it will get you maybe an IEP. Definitely the anxiety will get you an IEP and disability funding. 

 

So that's what you need to think about personally, what you need to have happen, who pays for it, how that happens. If she's like well the numbers are there for autism and she doesn't mark it, how do you pay for social thinking interventions in a year? It's all going to be about the money, not feelings, nothing else, just money. I would take and advocate for any label that gets you the access you need to get services that would benefit him. If it's on the line and she's like well we could wait or do it now, go for the open doors, the funding, the access. 

 

When I started with my ds, I didn't know what I needed. I was kind of flip about some things, didn't realize implications. So that's what I learned the hard way, that as I learned more I wanted more access, more ability to make happen good services for my ds, and I couldn't make them happen without money. And the labels bring money.

 

On the plus side, good surviving and good that she's going to spend more hours! That all sounds really good! And it sounds like you have good rapport, which is really good. This gives you a couple weeks maybe to be making question lists. You could kinda run down multiple scenarios and write them out. Could be good stuff.

 

Did you stave off the MIL? Staves are for vampires. Did you shine the light of day on her bloodless soul and wear rings of garlic around your neck to fend her off? :D