Advise on talk with adult daughter . aspergers in granddaughter

[Kat w]

My granddaughter has classic ASD signs. And my daughter knows it. She even came to me about a year ago and said mom. I think she's aspergers. Which was a huge leap for my perfectionist daughter.

 

O said I agree honey. Let's get her tested.

 

The dialogue died right there. My GRD has since been escalating. I keep her 3-5 days a week. Daughter is a paramedic and Sil a cop, both in school and they have insane schedules.

 

My daughter is sticking her head in the sand ( I've don't it too, did it with her, know the feeling well.)

I've tried to give her time to process and start to make the appts.

She hasn't. She did HAVE to take her to the eye doc and pediatrician. GRD darts eyes off and checks out while doing it. I personally believe these are seizure.

 

They eue doc just put her in glasses. I've offered to pay for MRI. The right kind of eye doc. ( forget what they are called . we haven't used one but is on the list to get checked after new year)

 

My daughter because she is a paramedic and taking classes to go premed....thinks she knows all things medical and has totally shoved all of this out of her mind.

 

My grandbaby in utero , they told my daughter her head was too small for body and gestational period.

 

My GRD is very bright. But didn't utter a word til she was 3. Shows all the classic ASD signs and honestly in retrospect , I'm not sure my daughter isn't ASD. some of the same exact behavior my daughter had. I think if she admits to hefelf this is the case with her daughter . she must come to grips with her own issues.

Daughter was mild cp. And I didn't know the signs of ASD 22 years ago. I do now and so does my daughter . ( she helped with my son when she lived at home).

 

I don't know how else to have the convo with her. I have tried and tried and tried. She refuses.

 

I work with my GRD when I have her from the things we've learned over the years with the boys. We all know tho. That is not the same as early intervention. She needs to be in the p.s. program whe she can. She was 4 in sept.

 

Anyone have advise on how to handle this?it pains me to see her like this. And my hands tied.

 

Would appreciate any and all suggestions.

Thanks

[maize]

You can keep bringing up what you observe, share relevant books and resources, but really you're going to have to let your daughter and SIL be the parents for this child, and that includes making their own mistakes.

 

You could contact the school district and ask about setting up evaluations and what they could provide in terms of services, then present the information to your daughter and offer to get the ball moving (as you probably know there is usually some wait time to get in for evaluations).

 

It took me quite awhile to listen to my mom and sister who were encouraging me to get an early intervention evaluation for my now three year old.

[Kat w]

Thanks for that maize. Thst was kind of what I was hoping for too....perspectives from parents who have been there.

 

I have gently talked with her about what GRD has done while with me ( all classic symptoms and my DD knows it)

She ignores it.

 

She as well tells me of things she does there, when she does, I recommend intervention .

 

I have thought about checking into their district for services . I'm just so afraid my daughter would get mad. Lime really mad and jerk the GRD from me and put her in reg. Day care. Which she does go to sometimes. Thwy have observed things too. A d told my daughter. I went to pick up GRD from day care one day and the owner came out and gently probed me. I knew where she was going. She said she has told my daughter these things.

 

Ive offered to put my GRD in gymnastics . pay for it and vet her there. I'm going to start my boys in this new gym in Jan. They work with and have alot of SN kids there .

My daughter refuses and says. I'm going g to put her in tumbling with her friend. She hasn't done it yet and I've been asking for months.

 

It doesn't help that my GRD asks her mom to live with me.

My daughter is ocd and has these...lines in the sand....so against the grain for ASD kids and I don't do thst. I don't battle her or the boys over....watching vidoes on their tablet, w/e small stuff lime that may be.

Her mom works alot. I think my GRD just loves the structure and family cohesiveness here. She has boundaries . but. We choose not to fall on our sword over a mess she made etc.

Ugh. Jus such a delicate situation.

[Kat w]

Honestly, I think there is an element in play here....that my daughter in her mind is thinking. Moms got it. She knows what to do and will do it.

 

She is missing the point of professional early intervention tho she saw it with her brother and how it helped and how essential it was to his development.

 

My daughter is conflicted within herself. I see it and she as much as admits it.

[OneStepAtATime]

:grouphug:  :grouphug:  :grouphug:

 

I stuck my head in the sand for a long time regarding struggles my daughter was having.  So did DH.  So did my mother, who had a lot more training in the area.  When I finally got evals, then my mom jumped on board and starting pushing this program and that program.  Not in a mean way.  She is an awesome human being.  She probably didn't even see it as pushing, more like gentle but firm nudging.  Only the more she brought things up the less I wanted to hear what she had to say.   I needed space to process on my own.  Once she backed off, I started doing my own research and getting the ball rolling, but it did take a bit.  

 

I was in a similar situation with a nephew.  His speech issues were HUGE.  At 4, really only close family could understand him.  I was the one taking him to and from his 4k program.  I was the one hearing the teachers discussing their concerns and how it was affecting his ability to interact with other kids and function in the classroom.  Notes sent home with the teachers fell on deaf ears.  Requests for parent/teacher conferences were ignored.  BIL and SIL were dealing with health issues and an older son with problems of his own.  I tried talking to SIL.  She insisted his speech was just a little "babyish" but that he would grow out of it.  Discussing how hard it was for non-family members to understand him, mentioning early intervention success stories, sending her resources to look into and possible ways to get targeted help (from me and from the teachers) just pushed her into removing him from the academic 4k program he was enjoying, despite his speech issues, and sticking him in a day care where they really didn't care whether he could talk or not.    

 

I don't know if any of that helps you at all.  You are right, early intervention is really important and if your daughter is working a lot of hours and not receptive it may be a really long time before she is willing to seek evals.  At the same time, continuing to push when she isn't ready to listen might delay that process even longer.  I am so sorry you are in such a difficult position.   :grouphug:  :grouphug:  :grouphug:  :grouphug:

[Kat w]

One-step.

I have done thst. (In my original post):its been a year since my daughter came to me about it.

 

She still everytime I see her, the things GRD has been doing. When I'm sent. My DD looks worried.

When I speak, she will at times listen and be worried then too.

 

I remain silent...ALOT.

 

She has had over a year to process. For the first 6 mo after she came to me...I didn't say a word about it, just supported her.

 

She calls me in the middle of the night worried. Usually that's when I speak.

 

As I said in my original post. I stuck my head in the sand with her too and with my son, I get this , btdt. So has my daughter .

 

Speech is the least of our worries, just something I mentioned.

I noted the classic ASD symptoms but didn't want to go into that too much.

Tantrums off the chain, inability to adapt, hiding under tables, all social avoidance, doesn't sleep good at nite. Up at least 3 times at night ysyly more like 5-7. Crying, having nitemares.

 

All of the classic symptoms.

The fact that weekly my daughter talks to me about this, she sees and does most of the talking. ( part of her processing, partly venting)

 

The intervention is my main goal/worry.

 

She just can't seem to take that step. It equals admittance. She sends her with me telling me what she's done. I started a notebook for her and she sometimes uses it. We pass it back and forth so its cohesive.

 

I am hoping that visual will help my daughter undeniably see...we need to do something and now.

She doesn't have a supportive husband. And alot of stress there.

 

I know she has a ton on ber plate and escapes to work, tells me. We are working on this this or that. Sometimes u will put in notebook if she hasn't.

 

She keeps coming to me for help , yet doesn't act. She's known since before birth something was wrong.

 

The pediatrician is seeing things, doesn't give referrals because she probably doesn't know where to refer ir ..fets the back up sense from my daughter . not sure which.

 

My daughter took me with them to last pediatrician visit and asked what I thought when we left, she did this with the daycare, bad me go by there and chat with and observe before she made the decision .

 

Conflicted no doubt.

 

Time is ticking tho...and she's 4.

I'm just afraid my daughter will let all the early years go by then when she gets her in the private school she wants....the symptoms being so obvious... Then they will say, lets do something. She's an old one for starting kindy. She misses the cut off by 8 days so she will be a while year older than most if the other kids , meaning, another wasted year.

:/

[Kat w]

I should also note , my daughter and I are very close . like best friends. She is very appreciative of things I do, almost to the point of humble tears.

 

We have a weekly date where we have dinner together with all 3 kids ( my 2 ber 1) and talk for a long time. Go shopping or just let the kids play at the mall playground wile we talk more.

 

She tells me her inner most deepest secrets and fears and all , joys and successes.

She's kind of.... My husband made this observation too and I hadn't voiced it....its kind of like....tag mom ir it ! Lol

She doesn't know what to do in her mind . where to put it and how to accept it.

 

When she went into labor she came and laid her head on my lap and I would comfort her the way I did when she was little. She waited on me to tell her when it was time to go to hospital (before she was a paramedic)

 

What pressure!! Lol. I sometimes don't realize, she's waiting on me to tell her.

 

I thought back to when she was in labor . her husband was on duty, her friend down the street both telling her....go to the hospital now! She told em...I'm with my mom she'll know when to go.

 

Again! Pressure! What if u make the wrong call on what and when to do it. ???

 

I feel like secretly... She's waiting on me to tell her.....its time to go!!! Jus like with labor.

 

So. I am at an impass. What do I do?

Ugh. Pressure . I'm not a professional, just a mom whose been through it.

[OneStepAtATime]

I have no answers.  I am so sorry.  Huge hugs.

 

(And by the way, I only mentioned speech because that was my nephew's particular issue, not because I was tying the speech issue he had to your specific situation.  Sorry if that was confusing.)

[Kat w]

No no, I know you were. I was just thinking. I hadn't really elaborated. On purpose. But ugh.

 

I need answers one-step!! Lol :)

It's a tough one I know.

Sigh. When they won't go....

That's what perplexes me and am at a loss for what to do next.

 

And I sit here and watch the moving train that is in an inevitable course for crash...watching and feel helpless.

 

And...the 4 yo ...goes without services . mom is not a therapist. Tho I can practice what would be homework generally speaking. Things we did with our boys.

 

And my oldest helped with therapy practice with the boys.

That's what I don't get. She knows what to do including who to call what tests etc.

 

Very frustrating for Winnie to watch.

She calls me Winnie. Lol. Too cute

[Kat w]

Another thing I should note.

 

This is my daughter who was diagnosed mild cerebral palsy when she was very young. We went through alot together.

Series of castings to stretch tendons. Braces and more casting to 'manipulate' bone growth.

 

Lots of therapy of all sorts. We went through this together and she depends on me to make a call if I think it needs to be made.

She trusts me and knows, she wouldn't be where she was if it weren't for mama behind her, driving her to the children's hospital to have all thses things done/ taken care of.

Tellin her...yes you CAN do this.

 

I've always set the bar way high for what we try to achieve and tell them even if we fall short of thst + and alot of times we will cuz we are human)

...that you've still done very well and huge achievement.

 

I guess I am looking for a magical answer I suppose.

 

I just wish I knew how much of this is my daughter waiting on me to say.....its time!

 

Or, if I should continue to do what I'm doing. I talk with my daughter daily. Just about...stuff.

I would like for suggestionson how to casually when we r having one of our jus hey how things going talks....

 

I don't know, how would any of you broach thst subject casually?

 

Or....in hour opinions should I take the chance and just say..daughter, its time to go.

I don't know which or how to do it

[OneStepAtATime]

Maybe you could form it as a question?  Like, "Honey, is there a specific reason you would prefer not to seek evaluations to just see if there is something that needs to be addressed?"

[Kat w]

Yea. Thsts a good idea.

 

I hadn't thought of forming in a question . that way a reaponce of some sort us appropriate .

 

Good idea. I will do that :)

 

See? Sometimes the obvious to others we just haven't thought of cuz were in it.

 

Thanks

[OneStepAtATime]

Welcome.  I hope it helps.  Best wishes.

[Kat w]

I hope so too lol

[geodob]

Katw,

Perhaps you could remove the labels of Aspergers/ ASD from the conversation with her?
To a convo of 'developmental differences' that you have both observed.

Where an evaluation could help to understand your GRD's developmental differences.

This understanding can then help define what 'types' of support would be suitable for her.

 

So that the focus is more on understanding the 'symptoms', which you both seem to recognize?

A diagnosis of the symptoms, rather than a 'label'?

Where your daughter might be more concerned with the 'label'?

As ASD/ Asperger's/ Autism, are labels that a lot of parents are reluctant to give their child?

As their is a lot of public mis-understanding of ASD, etc.

Where you mentioned that your daughter was diagnosed with mild Cerebral Palsy, when she was very young.

With Cerebral Palsy, their is a great misunderstanding of it, as people often think of it as an intellectual disability?

Which your daughter might have experienced?

So that your daughter might be reluctant to give her daughter a 'label'?

 

In which case, I wonder if removing labels from the convo with her?

Then to discuss it with her, in terms of an evaluation, to gain some understanding of your GRD's symptoms?

Along with some advice to help address these 'symptoms'?

[Lecka]

I think you are watching your granddaughter 3-5 days a week.

 

Is anybody else watching her? Does she go anywhere else where other people can see what you are seeing, and tell your granddaughter?

 

Can you talk to your husband? There is no reason that you daughter has to be the one to do this stuff, you can do it.

 

Is it possible your daughter would welcome an offer to make the appointments for her, if she is honestly just too busy? I think that is a thought.

 

I think you are totally within your rights to say, that you are watching her quite a bit, and you do not think it is a good situation that you are watching her while she is not having any assessment. I think that b/c you are watching her, it might be providing an escape outlet, in a way.

 

I think if your daughter was watching her herself all this time, and other daycare situations were starting to say "look, we can't meet her needs, and we feel bad to keep her when we know her needs could be met in this other program," then honestly ------ that is the impetus it can take for people. Like, not many people are going, "me! me! I want to take my child in for autism!" For a lot of people, it comes down to some difficult conversations and a slowly dawning realization of "I DO need help."

 

Separately, this is my opinion. I don't know if we can say for sure if your daughter is going to be self-reflective and self-aware through this diagnosis process to feel upset (or whatever) if she recognizes herself in some ways. I think that is really possible that this issue is neither here nor there *for your daughter.* I think it is a big issue *for you.* But there is no law saying that your daughter has to have some feelings of self-reflection, that they have to be negative to her even if she does, etc, in order for her to take her daughter to a screening (or whatever). Or to *sign a paper that let's you do it.* It is *a possibility* though it would probably be a big headache.

 

Your daughter might take your granddaughter for screening and go through various processes, and never connect it to herself. Or, it just might not be that big of a deal to her.

 

It really may be a huge deal to you, but not to her. Like -- she might be pretty happy in her life, etc, and not have a lot of memories of when she was a small child. But, you have those memories, and you are her mom, so it might be a lot harder for you to see your granddaughter have interventions and regret your daughter not having that opportunity. But will your daughter care? Maybe a little, maybe none. But it may not be a huge thing on her radar.

 

Your daughter might also be a very sensitive and insightful person, and might be having these kinds of thoughts. I am just saying, on the other side, maybe she is not having these kinds of thoughts in particular.

 

My first instinct on reading your first post, was to back off and wait on your daughter and SIL to do this on their own time/terms. But reading more ---- and keeping in mind you keep her 3-5 days a week, and maybe nobody else keeps her much ------ I think there is a case for you to push it. If it is not so much about a denial they are going through, as just not taking the steps -- I would push to take steps. If they are working through a process of denial ---- I would back off and let them work through that process. But consider watching her less. If you watch her less, they will be watching her more, and/or finding her another situation, where somebody besides mom/MIL is mentioning the same stuff. It might take that if you are currently the only person saying anything about it to them, and they are not around other kids much, etc. etc.

 

I do think that is on the harsh side, but I would consider it, if I did feel like I was contributing to the situation. If I felt like ---- that would not do anything but harm my daughter/SIL's situation and provide no likely benefit, then I would not do it just to be like "so there" or something.

 

Really, overall I would be firmly on the "stay out of it side" once they know your opinion about it. But, there are details (your daughter strongly relying on your opinion, your daughter sometimes waiting to take steps for things, your providing childcare 3-5 days a week, their level of busyness) that make me think, I think it might be time to push it more.

 

If there are other people who are around your granddaughter enough to see her behavior and mention things to her parents, then I think you could do well to back off. If you really ARE the only person who has an opportunity to see it, and who is in a position to say something about it, then you ARE that person. Many people rely on a pre-school teacher, daycare provider, etc. to have some difficult conversations with them. If they do not have any pre-school teacher or daycare provider in their lives, then I think that puts YOU into that position (as you are providing her with daycare and pre-school activities, it sounds like). If someone came in and said "I think a child in my daycare has symptoms of autism" then I, for sure, would be saying "you have got to talk to the parents, you might need to make a requirement for them." If you were not the grandmother, implicit in this might also be a feeling of ---- can you properly care for this child, and is it moral to care for a child who is not getting necessary interventions.

 

So, partly, I think you have that role, not just the role of mother/grandmother/MIL.

 

If I am wrong, and there are multiple other places/people where she goes and may be getting the same message, etc, then I do think it would be great for you to be able to back off on it as a mother/grandmother/MIL. But, then she would be coming to you saying "they are saying this" and you could help her handle it. You would not be in the position of the person saying it.

Edited December 6, 2015 by Lecka

[Kat w]

Geodob and Lecka,

Those are really good points.

 

You're right, with the cp, people did mistake her for also have an intelctual disability, when she actually test gifted. She went to the classes a couple times a cried not to go, when I talked to her about it I finally got it out of her thst she diiidnt want the other kids to think she was in an LD class.

She had alot of having to sit out of P.E cuz of casts or braces. And it bothered her alot.

 

I really hadn't thought about that part playing a role in this but now that you mention it....I believe it probably does. Hmm.

[Kat w]

Yes, I have thought about asking if she wanted me to call to get her in for an assessment but I haven't wanted to upset her. Haven't really known what or how to do next.

 

Thst could be one of my questions for her too. She is overwhelmed. Paramedic school was tough. She was away from her slot. And with her schedule , she spends days away from her now. Medics sleep at the fire station she has a minimum of 48 hr shiffys, usually longer.

 

She is driven, very driven.

 

Grd goes to daycare on her mom's school days, the daycare has noticed too and talked to my daughter . she didn't reply.

 

They talked to me one day about it when I picked grd up. I told them. Tell her mama what they see. I guess they were hoping I couldn't talk to my daughter while I'm feeling like I want them to talk to her ! Lol

[PeterPan]

Lecka said it more nicely, but that's where I'd be too.  That's a weird dynamic to say you're going to keep watching the dc, when she refuses to listen to reasonable observations and pursue the advice, and KEEP her from being in an environment where someone else WOULD challenge that and force her to admit it.  And maybe the dc would get missed; that happens.  But maybe, if it's so obvious, it would get caught and then she'd have more people saying it.

 

As for why the head in the sand, it's not rocket science.  She has some genes and she wants her kid to be perfect, genetically whole.  It's not a crime.  It's just not reality and it's a hard hurdle to overcome, when you realize you were carrying some genes and now your dc has a genetic defect too.  And maybe you've been over that hurdle so long in your marriage, in your reality, that it doesn't hurt you.  But it's her fresh hurt to go through and come to the other side on.  I know I had someone telling me if I ate right and wanted it enough, my dc would end up fine, with no genetic defects.  Seriously.  Because it's all environmental and what we eat.  Think positive thoughts, eat right, and hang your own genes that kid won't need braces or ANYTHING!  So when people started challenging us to get evals, that was really hard to deal with, that I HAD eaten right and HAD married a nice good (you know, good genetic diversity, hehe), and my dc should NOT have these problems, kwim?  

 

So you're saying come to head with a grief, and she doesn't want to.  That's not rocket science.  And maybe there's a reason.  I'm just saying I wouldn't be part of the game, because that's not healthy for the child.  The most healthy thing is to get the evals.  That's a SERIOUS THING when you're saying you're seeing so many symptoms that a developmental disorder ought to be on the table.

[Lecka]

From my point of view, I think another option is for you to say that b/c of a made-up reason (tiredness, womens Bible study, a project, whatever) you cannot take care of your granddaughter as much as you have been.

 

But you would love for her to go to a little pre-school program or a cute little home daycare program. Maybe you can pay. Maybe you can fill out scholarship information (all the church pre-schools here have really good scholarships -- though you are not asking at a good time since it is December, and they usually give them out in the summer ----- but it is still a thought I think, they might have a discount you can ask for that is not considered a scholarship). Maybe you can drive her sometimes.

 

If that would be okay, then that can put the pre-school teacher or home daycare person in the position of having this conversation. Maybe these people (and you could ask when picking one!) have relationships with the EI people. Maybe they can ask to have her observed in their program. Maybe they can be the ones to fill out an observation form. It is possible that it would take a lot off of you and your daughter and SIL. Maybe they would also have a conversation where they say they can keep her x more weeks but after that feel she really must go into the school district program. Or, maybe she can do both. Maybe she can have services at the pre-school or home daycare. It will depend on what your area does, but these things are possible. Maybe she could stay in if you go with her, and you would be willing to do that, and she can do that plus the school district program.

 

(Locally our school district would provide half-day pre-school 4 days a week, 3 hours either AM or PM. If her insurance paid for speech, OT, etc., she could choose to schedule that in the afternoons ---- could you drive your granddaughter to these appointments to help them out? If she could do a regular pre-school with supports, you could go with her and provide those supports, if possible, and she could have an AM pre-school and a PM pre-school. But really, you would need to find out what your local situation is. Ideally your daughter would find this out ---- but a lot of people go through this process with the daycare or pre-school as the "deliverer of bad news" and then have close family as "a support network." I think it would be great to divide these two things, if it is an option. If it is not an option, I do think you may need to take on that role, even though in general, I would really say that just as a mother/MIL your role would be more to stay out of it. But then your daughter's reliance on you and some things you have mentioned, I do think a major case to take more of a role. It does not sound like you have the "alienated daughter, defending her child from any allegations of autism" situation. It sounds like she has brought it up with you, and just hasn't taken any steps. And, a lot of people don't take steps until they either realize "I am not handling this on my own, I need help" or they get a sharp wake-up call from pre-school or daycare. That is just the truth. If neither of those things are going to happen with your daughter, b/c of you being a caregiver, then I think that does put a burden on you to either have the conversation at a more demanding level, or step out of the role in favor of a pre-school teacher who would have that conversation.

Edited December 6, 2015 by Lecka

[PeterPan]

I think that's outrageous to call and take someone else's child to the doctor and walk over the parents.  I just wouldn't do that.  She has to own it.  But I'd pull the plug on the denial part.

 

Adding: There's so much overlap with CP, DCD, ASD (all involve praxis).  Is it possible that you don't have the label right and that by broadening the alphabet soup or just being very *precise* on the symptoms you're seeing you could bust through this?  Don't say ASD but say specific symptoms, kwim?

Edited December 6, 2015 by OhElizabeth

[Lecka]

I would make calls up to the point of "this is exactly who you need to talk to, and this is what you say." To save all the "who do I call? what do I say?" paralysis that could be occurring.

 

If she can't get off work/school to take her child to doctor's appointments, I would consider offering that, too.

 

I do not mean doing it in her place ---- I mean more, if it is an impossible logistics thing.

 

I agree ---- taking it over is a really bad idea.

 

But removing some of the logistics burden or fear of phone calls -- I think would be fine.

 

I also am reading into ----- well, we know a lot of people on the spectrum don't like talking on the phone or making phone calls.... if that is a factor, I think it would be great to support someone in that way. She can't do it all for her, but if she got to the point where she had talked to somebody and said "okay, I am going to call back at x time" and the person is ready, and then her daughter can take a few minutes to do it when she is coming to pick up her granddaughter ---------- well, I think that might be really welcome from the daughter.

 

If that would not be welcome ---- then I agree!

 

Personally I would have loved for somebody to have offered me this kind of help. I would have appreciated it very much.

 

But if it was pushed on me while I was not interested, then no, I would not have liked it. At the point that I wanted it, I would have appreciated it.

 

If it is not welcome now, then I do think, back off, and maybe offer again when it is welcome.

Edited December 6, 2015 by Lecka

[Kat w]

They literally work insane schedules, overnight , weekends etc. When I have her its overnight too . my Sil loves me to death, we give him love and encouragement that he didn't have growing up.

 

They have accomplished alot in their young lives and have a home with 5 ac. ( work) . they do depend on the fact that if we see something , we will mention it and help where we can or where they want us too.

In goofy ways even, like my Sil is enclosing the garage, my husband noticed the door wasn't gonna fit and help him rework it and get the door on. He was happy to spend the time with my husband and commented several times how much work my husband saved him.

 

So....we have good open dialogue and they don't get mad when we suggest things etc and seem to welcome the input and take the advise almost always. So I feel like we are lucky there.

 

I'm thinking back to convos we've had and I really don't recall how or if I've termed it anymore...not sure but that's a good point to make sure in the future I'm paying ATTN and DONT use a lable. She is very label apprehensive cuz of her own situations, I do know tho. My daughter is convinced it's aspergers. When she brings it up, she almost always uses the term. Maybe I should say well, we don't really know what it is until you have her assessed. Maybe thst would ease her mind and as I think more about it I think it would.

[Lecka]

So, why isn't she getting her services?

 

Separately, I just realized this this week, but my son was down in the school district records as "developmental delay" and not "autism" until this week when they changed it.

 

So if "developmental delay" sounds better, maybe it is an option.

 

If she is saying Aspergers and just doesn't want her to have services you think she needs to have, I don't understand how that makes sense. If it is more that she has been busy and it seems like a huge effort and there is always something more important on a day-to-day level ----- that I totally understand! If that is the case ----- I think an offer of legwork might be great.

 

Edit: I am going to add, that reality is, when both parents work, and a grandparent is available ---- often the grandparent is doing a lot of the legwork and appointments. Parents come when they must. But this is reality for 2 working parents in a lot of situations.

 

I see this in my town.

 

I think it can work out great!

 

On this forum ---- well, this is a homeschooling forum. It is not attracting people who leave a lot to the grandparents and show up when they can, but just do not have a lot of chances.

 

This is also why ---- in daycares and pre-schools, the daycare/pre-school may do a lot of the paperwork and stuff.

 

Sometimes people just cannot get off work, or just have so much going on, they don't have time.

Edited December 6, 2015 by Lecka

[Kat w]

Yea Lecka,

 

I have pondered that much, how much is not wanting to come to terms with any issues she had.

I see the look in her eyes( I know her very well) and wonder if that's not the case. Is she thinking back to her own early childhood ? Or is it fear of the unknown with her daughter .

 

I think at times, its either or, other times its both.

 

My Sil really doesn't prefer the grd to be at daycare and neither does my daughter. They prefer her with us and so does grd. I think the owner of the daycare and her staff are pretty sharp cookies and my daughter as far as daycare goes...likes them alot.

 

She td me they talked to her, I just listened.

 

Really it's hard for me to know when I should speak or just listen. I've tried the last several months listening route with occasion suggestions... Like gymnastics. My daughter says yes yes. Then doesn't follow through.

 

I think I will have my convo with her mostly questions. One of them being, do you want me to call?

 

I've never asked cuz I didn't want to overstep my boundaries, but she may be waiting on me to offer to help in thst way.

She does have me take her to the occasional pediatrician appt if she is on shift and can't schedule it when she's off.

 

Something I just thought of....she is ALWAYS apoliging for asking me to do so much. I always tell her, honey I don't mind . I love being there for my girls. She still feels bad.

[Kat w]

Um....Elizabeth ....I don't call and make the appts. Not what I said. She *has me take her to the appts occasionally* when she can't get off.

 

She ASKS me...mom, I can't get DD to the doc...would you mind taking her?

 

What am I going to say? No?. No , that's not gonna happen. If my daughter asks for help....I'm going to help her I'm anyway I can.

 

Rest assured. This is not ME making the appts...it's her and her asking. Can u take her...or can u run and get this script for me...I'm so sorry I just can't get there. Of course I say yes.

[Kat w]

And.....she is the one who came to me and used the word aspergers. .

Not like I say oh. I think ur kid is asd.

 

No, not the situation at all.

 

She comes to me about this, alot. And her verbage is asd.

 

And I have said alot through this post..

I'm not a professional just a mom whose been there.

[Kat w]

Why do I want assessment? Because it could be many things or one thing or a combo of things.

 

I am big on assessments. Had all my kids. Well 4 or the 4 in EARLY to make appropriate testings determinations and therapies.

[Kat w]

The military pediatrician wanted her to have an MRI.

Brain issues. She never did it.

 

Her eyes dart off to one side and she shuts down...I suspect seizures. Have I said thst to my already bogfed down worried stressed out overwhelmed daughter?

No. Of course not.

[Kat w]

Yea. Lecka. I have talked to her about real preschool programs. She is very hesitant to do that.

 

I wonder if it's not because she's afraid if what they will say.

 

She already heard it from the daycare.

 

A friend areound the corner started keeping her about one night a week . they have a 3 hour gap from 4 am til 7 am they need care for.....the friend started mentioning things to my daughter . she had her quit watching her. :/

[Kat w]

Thing is, her experience with our lil guy and the fact that she's a county worker and has much contact with all kinds of programs through the county perplexes me and where I think maybe she is just not ready to ' go there yet'

 

I don't know.

Her other grandmother sees her about once every 3 mo and always tells them this or that.

 

Yes lecak. You are right.

And my daughter just talked to me thanksgiving about ppl judging her for the course of action she's taken for her life.

 

She has wanted to be a doctor of some sort since she was little. First it was a vet. We live on a farm lol

Then it became a ppl doctors. She wants this so badly. And she has the brain power and stamina to do it.

 

I will never turn my daughter away. Ever. If she asks. I'm going to help when and where I can.

 

Maybe if I get the numbers of who to call through the county and have it on hand for when and if she wants or is ever ready for that....but good points have been made.

 

She may just need me to ask....do you want me to call honey?

She has alot of anxiety about this whole situation. I see her fingers start to didge with themselves when she starts talking about it.

 

I think uve made alot of really good points . she is overwhelmed and soooo appreciate s any help I give her. Like I said earlier. Almost to the point of humble tears sometimes.

 

She calls me crying sometimes hoe much she misses her lil one. I listen n comfort and make suggestions. She takes them.

 

That's what has me perplexed on eaxtly how to move forward . she asks and DOES take most of the suggestions.

 

Or will ask, can you help me with thst?

 

Her hubby some days just goes nuts. Hell call my husband and say. Please can I bring her to you???

He can't deal. The screaming fits, the hitting, the....well, you all know what it's like. And when hea there with her without my daughter ...he sometimes jus can't take it.

He's in school too. Criminal justice degree. Lot of working and school going on with them .

[Kat w]

The reason I wonder if it's not thinking to her own issues when younger is because she herself says....I did that as a child and I don't have LC.

 

My granddaughter could easily be one of the 2e kids. I don't know.

 

I know she needs assessments.

 

And yes Elizabeth, you may think it's a ' weird dynamic' but preschool has been suggested by us. Many times. Even offered to pay for it.

 

This is from my daughter who...literally until I started doing more for her literally pulled her hair out.

 

A full on bald spot in the front of her head at the bang area.

 

Now? She has finally stopped thst and its starting to slowly grow back. Why??

Cuz moms helping where I'm asked.

 

She works a full time job a part time job is in school and tries to spend as much time with her daughter as she can.

Sil also works 2 jobs and is in school.

 

O guess I see why my daughter feels jusged my some of the SAHM's

[Kat w]

I so appreciate the dialogue . it helps. It also helps to get different opinions.

 

I will try these when we spend time together tues. That's our weekly date :) love that she makes time for mom with her busy schedule .

 

Also I would want to note:

The relationship I have with my daughter is priabbaly not going to be the relationship others may have with their moms.

 

We are very close and she needs and asks for the emotional and physical support right now.

 

So, she just quit pulling her hair out. I'm not gonna put her back in a pit if overwheledness.

Period.

I will suggest and offer to pay for preschool again.

 

Her daughter doesn't do well in new situation s . I know this plays a factor. My daughter has told me

[Kat w]

Yea. My Sil doesn't offer her alot of help. He,....will just checkout .

 

He was raised differently.

 

I too Lecka just do not understand why she hasn't made the call.

 

It's why I made this post.

I am at a loss.

She sees a need, but doesn't act. Which is why I thought, maybe cuz of her situation as a child? I don't know. Just throwing things out there to try to figure it out.

 

My daughter has some anxiety . always has. She's human. She may know what's best but acting can be a whole mother story.

 

And with the daycare, the friend, the other grandma pointing the same things out. The friend the other grandma and daycare don't even know each other and saying the same thing. :/

 

Wish it were easier. Wish I knew what to do.

 

I am going to wait til she brings it up Tues. And she will. She always does in some fashion. I'll take the...asking question avenue.

 

Other posters have a good point and I like thst it either requires an answer or....avoidance.

 

Maybe she would see the avoidance there. Idk.

 

I just know. She needs service s lol

[Storygirl]

Kat, have you talked to your son in law about this? He may be in a better position than you to talk to your daughter, since he is also the child's parent. If he is concerned, HE could set up the appointments.

 

Since your daughter is so busy, she may just be overwhelmed by the idea of getting starting, knowing who to call, figuring out where to go, worrying about how to fit more appointments into her schedule. I can be that way myself, and I've started enlisting my husband's help. "I know we need to arrange this, but I can't seem to make it happen. Can you please make these appointments or figure out who to call?" Sometimes I need help making something happen once I know that it should happen, because I have anxiety about it, and I hate making phone calls.

 

I know there may be some underlying reasons for her slowness to act, but if it is a matter of just not knowing how to make it happen, that is a place that you could step in and help.

 

 

ETA: I was posting at the same time as your last post.

 

Edited December 6, 2015 by Storygirl

[Kat w]

Storygirl, that's a good suggestion .

 

My husband has asked questions when he gets the grd on days my Sil is loosin it.

 

Oi just asked my husband what he says....

He says....he's not allowed. Thsts my daughter s realm and she'd kill him if he made thst advancement. Lol

He's probably right.

 

But good point. Getting Sil to play a more active role.

 

Just harder with him. His parents are aloof and was raised thst way and has a tad of that himself.

He's just now stepping up to the plate to be a better husband after spending a lot of time with my husband.

He and his dad don't speak.

 

I will talk to hubby bout that. I don't want my daughter thinking I'm ' going over her head'. But if the guys are just having a casual convo about it.

 

Could work out good.

 

Something I just thought of too when jotting down note is questions to ask my daughter .

 

The gifted route!!! How bout you see what her strengths are. She is a very bright lil girl. Could see her being 2e.

If my daughter is investigating and having assessment done for GIFTED, that just may be the difference.

 

Just may be.

Ima ask lol :)

[Kat w]

The other thing about this is...

 

There aren't alot of people we can leave our kids with that have issues lime this. So, I've been there , I know how it is.

Only my adult children or my sons gf are the only ones I can leave my 2 lil guys with.

 

Most ppl can't handle it. And why I can't turn my daughter away.

 

I would love to be able to leave my kids with my mom. I can't. She can't deal with it.

My daughter knows I can deal with it and won't judge her in the process and won't complain about it.

 

Her other grandma simply jis can't deal. And I get it.

 

....unfortunately... I get it :/

[Kat w]

Storygirl, I've read your post a couple times. I think you are right . I think my daughter just simply cannot handle the call making right now, the emplimentation of it.

 

She gets overwhelmed with online stuff , making calls, etc.

 

When she's doing it for school everything just seems like such a hassle and a definite maze to sift through .

 

I think...she's just very bogged down right now.

 

The Christmas break for both their schools start next week.

 

May e she can be more relaxed and have more time to think about it and what help she does need.

 

She simply...may not know.

[PeterPan]

Sorry, I'm totally headachy here.  We had a gymnastics meet yesterday.  I just meant I wouldn't schedule a psych eval for her over the desire of the parents.  Just taking to appts they schedule, that's cool.

 

Sounds like the parents are really busy, wow.

 

You know, I think another thing you could do is *video* the dc in the middle of behaviors.  It will take some work, because my ds is hard to get.  He does *not* like to be videoed or photographed, so he'll shut you down.  But if you have an extra person or can manage it safely, it would be helpful.  Then the mom has video footage of what is going on.  Then you sit down on youtube and you have a come to jesus moment about it, kwim?  Some behaviors seem really typical till you seem someone *else's* dc doing them has an ASD label.  Some of ds' behaviors were like that for me, like oh he flicks but what's the big deal.  Then when I met a dc with level 3 ASD doing it and realized oh, that is part of it.  Same deal for his repeated and repetitive speech.  When I was finally with some other kids with diagnosed ASD doing it, my ear immediately caught it saying oh yeah, that's what ds does.  But when you're in the middle of it, sometimes you're so swamped you're not seeing it that way.  If this dc is having that many meltdowns, they're just trying to survive.

 

Is she young enough that there's a *simple* solution like calling in EI?  I've lost track of the age.  I think till about 3 you can call in EI.  So then, if the mom is busy and stressed, all she needs to do is give permission for EI to come.  Not long appointments, traveling somewhere, waiting with a dc who is hard to wait with.  Just let EI come.  That might be more acceptable.  

 

I'm really not an expert on it, but it would seem wise to me to figure out whether you're having seizures causing brain damage causing behavior, or whether you're dealing with ASD + seizures or what.  I mean, if you've got seizures causing brain damage and hence behavior, it's time to get those seizures under control.  But maybe that's too blunt and not where she's at?  I don't know much about the comorbidity of seizures and challenging behaviors. https://www.autismspeaks.org/family-services/epilepsy Here it's saying they could do an EEG.  Maybe the mom was concerned about anesthetics or her dc's ability to behave in the expected way for the testing?

 

Some things are just hard to sort through.  Sometimes the parent needs time for the *discrepancy* in behavior to become obvious.  For a long time, I just thought my dc was just young, that it was just whatever.  He had the symptoms, but we just figured there were explanations, that he was within the normal range.  Even with the diagnosis it was like yeah, but other kids do that.  Now that he's 7, we're finally to the WOW, that is way discrepant from where he should be.  So eventually they'll probably get there.  It may just take time.

[PeterPan]

Just harder with him. His parents are aloof and was raised thst way and has a tad of that himself.

He's just now stepping up to the plate to be a better husband after spending a lot of time with my husband.

He and his dad don't speak.

 

Perks up the ears.  Genes.  With the new research on CNVs (copy number variants), it's becoming obvious that someone can have *some* of something and the dc gets *more* of it.  And maybe that makes it harder for him (bio dad) to sort out, harder for him to have tools to deal with, harder for him to support your dd in dealing with, kwim?  

 

And that's another way you an approach it too.  How about we call in a behaviorist, let the behaviorist help with the challenging behavior (not a label, just help with behavior), and let the behaviorist get the parents onboard and give them some more tools.  Might be sort of a back way.  Behaviorist.  It's what we've finally brought in.  Lecka is the one who challenged me on that.  Like if Barton is the "really get in and get the right tools" for dyslexia, then a behaviorist, BCBA, some ABA, that's your "really get in and get the right tools" for the challenging behavior of (pick your labels).  And we made the call and this lady is GOLDEN with ds.  Because, honestly, I've been choked, had my hair pulled out, you name it.  This is NOT gonna go away.  So maybe that's a simpler step they could get to, just acknowledging that she needs behavioral help and letting that person come in with the uber tools.  Then that person gets the job of referring them to a psych.  But even if they won't go to the psych, if they're getting behavioral help they're getting the right help, kwim?  And then what are their school plans?  They'll hit the wall if they homeschool.  This won't go away.  Or they'll put her in school and the behaviorist will say hey since you're going into school let's continue this with an IEP...  Or they want *you* to homeschool her?

Edited December 6, 2015 by OhElizabeth

[PeterPan]

The other thing about this is...

 

There aren't alot of people we can leave our kids with that have issues lime this. So, I've been there , I know how it is.

Only my adult children or my sons gf are the only ones I can leave my 2 lil guys with.

 

Most ppl can't handle it. And why I can't turn my daughter away.

 

I would love to be able to leave my kids with my mom. I can't. She can't deal with it.

My daughter knows I can deal with it and won't judge her in the process and won't complain about it.

 

Her other grandma simply jis can't deal. And I get it.

 

....unfortunately... I get it :/

Yup.  But you know, that behaviorist came in the house, talked with me, *watched* ds, letting him get acclimated to her, and when she started to interact with him she had it SO perfect, so right on, my whole stress level went down.  I walked away, started cleaning, took deep breaths...  So those people exist, but they're paid help.  

[Kat w]

Oh. Lol

 

I thought you meant the pediatrician appts for colds ( alot of and one reason they don't like a ton of time at daycare , she stays sick.)

 

Sigh. I hate these times.

 

Where you either really just wondering up putting your kids *stiff* on out there.

 

There's jus deeper background.

 

Hubby is,....a cop. VERY overprotective . to the point as to alienate ...people.

She has been in a bad spot for years.

 

Just came to her dad and I about more stuff. It's complete and we've recommended counseling together.

 

He won't go. Never would, but considering lately.

He loves his wife. So...

Idk. But the lil one while they sort it out....needs help.

 

I wanna be delicate here.

That's why my daughter. Man. I should maybe delete. Tho. A big part of me me thinks....

 

She would maybe read and consider. And when she was ready to talk about it. ...she will.

Maybe she won't read this. I dunno.

 

She's busy. Probably not. Still...

 

Thank you ladies for all of your help. It is all help and I need it.

 

Iys why I asked you all.

There are other places I could have gone. I wanted to hear what all of you had to say :)

Thanks... A bunch :)

[Kat w]

I know , paid help. Hour right. Ugh. So dislike thst part.

 

Why is all of this soooo expensive and be so heart wrenching.

 

I think it would be easier don't you think ? :/

Ugh.

But really guys. Helped me alot.

 

Any other thoughts are welcome too.

Helps me to put thst on paper n see.

 

Also why I think if my daughter could have 2/seconds to go over her notebook with someone. She knows ppl in the field who she trusts to look at it with her.

 

That's gonna be one of my questions to her.

 

She's j

[Kat w]

She has friends she can think about sitting down w the notebook...

 

She's written in it too.

 

I just had a thought. Omgoodness.

 

We need to have separate notebooks.

I'll give her mine when she asks or goes to ber trusted friend or doc .

[Kat w]

OhE. Headache. I hear ya.

Almost 2 weeks and an underlying migraine stays in the back or...full on own. Lol

 

I no likey headaches :)

 

Oh no way dad or mom would open their home to that. I'm sure of it.

 

Nope. Cop and paramedic. Oh and wait....she starts fire school in January. She takes all the dlfree school she can get.

 

This sux lol

I want a vacation :)

[Kat w]

The school part,

 

They want to put her in a private school in county.

 

Sil is a cop there. In his zone so...

Yea. He's by thst daycare at least once a day when he's on days.

 

I just thought . they had to have mentioned it to him? Right?

 

Maybe not tho? Maybe they are idunno. The cops uniform . they may be thrown off by it idk

[Kat w]

They will def got s wall putti g ber there. She's an old one. Will start late. = another wasted yr.

[sbgrace]

I've read some but not all your replies. I'm late coming to this/may be off but:

I come from the perspective that a parent/caregiver/grandparent can in fact do as much or more than the professionals in autism related areas if they have the right resources.

So I would get myself the Hannen program materials that I felt fit best and go about working with her while I had her. The materials are fantastic and written to the parent to implement.  If there are sensory issues, read up on and try to address those too. So I'd act as if she has autism but drop it with mom. Let her come to it in her own way on her own time. It's ok if she's older when that happens. There is no early developmental window that slams shut when she passes a certain age. 

 

Is she going to go to school in K? Because eventually the school will likely step in with the autism push with mom won't they?

 

I might say something to the doctor about the suspected seizures, because scary. But you're on shaky ground when you do the parent's role with someone else's child, even a grandchild. That part is tricky.

 

To me the autism part isn't. It's ok if she closes her eyes/keeps her head in the sand. I would do about anything to avoid pushing those buttons.

[Kat w]

Hey....I'm jis belpin vet ber ready. I do what I can.

 

I have 2 at home thst need help.

 

My hands are full too. I can usually jus fd ber right in with the boys. Won't kill her. She likes it if she can touch it lol...and I still get the boys done.

They need preschool anywhere .

I could offer again with both of em together. I think Sil is tired of my daughter cutting him out and maybe wants to take more of a role.

He's payin his dues for fir some things lol. He knows it. She knows it.

[MomatHWTK]

My child wasn't even dx until a pre-teen.  I understand that you feel the a certain path is the best and necessary.  But beyond sharing the child's day honestly and clearly, I don't think it is your place to do more.  The girl has parents, and like it or not they get to decide how to handle raising her- even if you think it is the worst way ever.  

 

Grandparents who try to parent end up locked out, IMO.  I know that's what happened here.  At some point I grew up and got tired of having my every move questioned and monitored.