I need support - new diagnosis

Log in / Sign Up

List of Forums + New Post Recipe Box Usergroups Following My Posts Bookmarks

Private Messages Advanced Search Rules New User Guide FAQ Advertise Contact Us

Forum -> Parenting our children -> Our Challenging Children (gifted, ADHD, sensitive, defiant)

View latest: 24h 48h 72h

amother

Tue, Sep 20 2022, 12:15 am

We've always suspected this, but today got the results of our almost 4 yo dc ASD psych eval. She said there's a lot of concerns for asd, definitely anxiety, and risk of adhd. They're sending us further for a neuropsych evaluation.
Idk how to process. This is our first child. I'm so sad: for us, for dc, for younger sibling who doesn't get enough attention Bec dc creates havoc all day.
Now I'm scared I'll have more kids like this
I'm scared dc won't have friends (main issues are social)
In scared dc won't get married
I'm scared we'll hafta go into debt for therapy
It's a hard time in my life as it is, and this on top of it....
And nobody to turn to IRL because dh wants to keep it under wraps for now
I need you guys!!

amother

Seafoam

Tue, Sep 20 2022, 1:10 am

Oh, OP, I'm so sorry. When the chasm opens and you see how deep it is, it is so easy to assume the worst, to try to come to terms with all the what ifs.

But life is often better than the what ifs. A lot of things that seem impossible become possible over time. People grow and change in unexpected ways. And even if not, our own growth can make scary situations manageable if/when they actually occur.

Here's a repost of a poem expressing that idea:

Welcome, My daughter
Down the rabbit hole.
I didn't invite you here,
But I know why you came.

Its dark yawning opening
Pulls at your soul
And your maternal heart
Draws you down in shame.

I watched you explore
The maze that's below
And watched as you found
Only dark dead ends.

I understand, My daughter
That strong need to know
To be prepared for whatever
Destiny sends.

But at the same time,
I'm sad for you.
Because what you saw
Is not what will be.

You can't see the new tunnels
I'm digging through
To the bright future
That's coming from Me.

Wishing you clarity and the tools to give DC all they need for a full and fulfilling life. May you see much nachas from all of your children!

amother

RosePink

Tue, Sep 20 2022, 1:33 am

Breath!

I felt the same when my first had a diagnosis. We got her help and she’s thriving.

We almost lost our second due to a medical issue. DC is b”h healthy now but now we’re now going through a similar diagnosis. We’ll get her the help she needs too and she’ll thrive.

Our next one is delayed and with help and watching patterns, b”h the issue was identified and dc is catching up. We don’t know what interventions she’s need to fully catch up.

It’s ok. She’s just going to live the life she needs to lead and not the life you want her to lead. After we almost lost our second, my perspective is different. She’s here and we have the time and strength to do everything we can to fight for the precious lives we’ve been granted in their way and not ours. Just remember to lead them on their path and not your own. When you see it in that light, you just keep going grateful to Hashem that there’s so much help and direction out there! Hashem has her back and yours in supporting and raising her.

The day to day when they live in their own world and don’t hear you is tough but there are techniques to address it and we’ve traveled very far this way and all my dc are now mainstreamed.

amother

Impatiens

Tue, Sep 20 2022, 7:32 am

Hugs! Take your time to process the new reality. As much as you suspected it before when it becomes definite there is going to be some pain.

My mantra is to just worry about today. Because once you go down that rabbit hole of what's going to be its a very depressing place to be.

I just want to say one thing about what you mentioned about DC younger siblings. This diagnosis will probably be a blessing for them. Now you will figure out how to work with DC and there are some very effective methods. When I think back to my home life just over a year ago when we got a diagnosis it was completely dysfunctional. Now bh my child is thriving. No he will never be neurotypical but he is so special in his own way and I wouldn't have it any other way.

amother

DarkViolet

Tue, Sep 20 2022, 7:47 am

I have 3 kids who received ASD diagnosis (HFA). One at age 25, one at age 8, and one at age 2.

They all have their peckelach, but the youngest, now in HS, is on a MUCH better path than the siblings. That's the one that got a lot more proper therapy and support from the beginning.

If you do get a confirmed diagnosis, there's plenty of reason to be hopeful about the future.

amother

Red

Tue, Sep 20 2022, 8:01 am

Me and my husband both have ASD and anxiety. Were married, have children, have jobs, are happy.

We both had lots of therapy when we were younger.

Chickensoupprof

Tue, Sep 20 2022, 8:28 am

I'm married... Had a though childhood, u need to have the right sluchim out there. Please don't do ABA but I know that across the atlantic people really go hard on child abu--- ehhh ABA.

amother

Amber

Tue, Sep 20 2022, 8:36 am

Just realize that diagnosis is nothing other than a gateway to services, that's all. Your child has exactly the same potential as he had before the diagnosis and the diagnosis won't change his future. All it's there for is to get you access to more help

hodeez

Tue, Sep 20 2022, 8:49 am

Dude relax it's not that dire. My first was diagnosed at that age and I have 5 after bh that after complete opposites to her. My first is the best kid in the world, so loving and gentle and caring. She has a bit of difficulty learning but with the services she receives she is on par with the rest of the class. Don't take it so hard, it will be good iyh. If you need any help or guidance ask away, many of us have kids who have been diagnosed

amother

Firebrick

Tue, Sep 20 2022, 9:16 am

My oldest was diagnosed with hfa, adhd and ocd. Now six years later and after a lot of aggressive biomedical treatment (supplements, minerals, herbs, homeopathy, diet, gut work) she has lost all these diagnoses aside for some mild anxiety, is indistinguishable from her peers and our home life is so much more peaceful. It’s not an easy journey by far but there is support out there if this is a path you choose to take. I was skeptical at first, but we chose it because it was the only hope for a cure. Now I know that healing is indeed possible.

amother

Fern

Tue, Sep 20 2022, 9:22 am

So hard

I have fears too... I just always try to remember that children aren't our accomplishments/a list of functions/achievements that we can go down and check off each box.
Each child has their own future and own potential, and is going to give you both nachas and aggravation in their own way.
Your job as a parent is to help your child be the best that THEY can be. Not mold them in your image.

Kiwi13

Tue, Sep 20 2022, 9:26 am

Two of my kids have ASD, and so do I. It's a lot to handle in the beginning, but once services are in place, it gets easier. Speaking to myself here too, since we just made Aliyah and I'm in the process of getting everything in place all over again! One of my kids is a bit "lower functioning," (not the greatest phrasing, but you get what I mean), and we don't know what his future holds, or what his full capabilities are. It's scary sometimes, but we keep going, day by day.

I think I actually took my oldest son's diagnosis harder, even though he was the last of us 3 to be diagnosed. (Originally his pediatrician wasn't sure if it was just severe ADHD or ADHD plus ASD). He's 7 years old now, and he definitely needs social skills help and a bunch of other help, but he's a bright kid, extremely curious - and when he gets interested in something - WOW, he will learn EVERYTHING on the subject, so keep learning if you want to keep up!

ASD has some innately good qualities, in my opinion. There's a certain straight-shooting honesty I've found in fellow autistic people that isn't always there, at least not as plainly, with the general population, for example. People with ASD who have special interests often TRULY EXCEL in their chosen fields of study or in building a skill set. There's also such a wide range... once you've met one autistic person, you've met ONE autistic person, goes the saying. ;-)

Try not to see the diagnosis. It happens to be that ASD opens a lot of doors when it comes to early intervention and school services. But your child is still your child, regardless of diagnosis or label or anything else.

PS. Having an autistic child was one of my biggest fears before I became a parent. And now I see it as among my greatest blessings. My one typically developing child is actually the odd one out in our family! (The kids all get along nicely for the most part, no worries. ;-))

amother

Tue, Sep 20 2022, 10:03 am

Wow, I'm overwhelmed by the kindness and support of you ladies! I don't take your support lightly, I feel so much better knowing there are ladies out there that know what I'm going through! Wish I could respond to each of you.
The theme of many of your responses is so true, and something I need to work on- not to worry about the future. And that my kids aren't my "accomplishment". I just want everything for my kids.

I really really REALLY appreciate those who added their experience, whether with asd kids, or asd themselves. I suspect my dh has asd, and likely some of his siblings/neices and nephews. There's also a lot of adhd in his family.
Dh's possible asd and diagnosed adhd negatively affects our relationship, which makes these diagnoses so much harder.
I also wish I could share IRL, for a selfish reason: occasionally when I vent about dc to my mother she never validates the challenges, either dismisses as normal 3 yo behavior or makes me feel like it's my fault for leaving dc as a baby to go to work (she was a sahm). Friends also, I have one who hints that maybe dc is like this because they're spoiled, or because I'm anxious.

So for anyone who can help figure out services:
I guess what's scaring me a lot is that dc is very tough to handle nowadays. We were getting behavioral therapy for the anxiety before this evaluation, but it's just parent mediated. I haven't been able to find good play therapy without a very long waiting list yet.
Dc has a great personality bH, but often feels like a volcano ready to explode. If the attention isn't on her, she shows her upset.
The biggest concerns the psychologist had were: lack of interest in peers, doesn't play appropriately for developmental age, movements, sensory avoiding and seeking, trouble with transition, echolalia, communication troubles even though dc is very verbal etc
Dc will be evaluated by slp and ot as well.
We do not live in NY, bH for now we can get some therapies through insurance.
I have such a hard time figuring out what kinds of therapy to reach out to!
And what do I do about daycare? Dc has always had a very very hard time transitioning, and is almost selectively mute at school. Dc worries a lot about school, never wants to go, wants me to stay every morning, sticks by morah all day.

If you read this far, thank you! I know it's a ton...

amother

Tue, Sep 20 2022, 10:07 am

One more thing
Re younger sibling, it's not a diagnosis thing I guess. Just that dc demands a lot of attention, and I giving a lot more to her than younger dc. I feel it isn't fair to younger dc and I'm afraid of resentment etc.
It's just that when dc intentionally spills things on the floor, needs to be encouraged to go to the bathroom, throws toys, doesn't play independently etc

mha3484

Tue, Sep 20 2022, 10:17 am

I have two kids who have a mix of needs. I found that not keeping it a secret was the best thing for me. The support of other parents who have been there and done that is really really valuable. Now that my kids are in a much much better place I try to pay it forward myself.

amother

Daphne

Tue, Sep 20 2022, 10:55 am

amother OP wrote:

The biggest concerns the psychologist had were: lack of interest in peers, doesn't play appropriately for developmental age, movements, sensory avoiding and seeking, trouble with transition, echolalia, communication troubles even though dc is very verbal etc
Dc will be evaluated by slp and ot as well.
We do not live in NY, bH for now we can get some therapies through insurance.
I have such a hard time figuring out what kinds of therapy to reach out to!

I would definitely have her on a list for a good play therapist, but in the meantime, the SLP and OT evaluations might really shed some light on how you can help her sooner. Sometimes an OT can work on sensory issues to the point where some of the other behaviors fall away or at least occur less often, which can make things SO much easier for both of you. Same thing with speech -- if she's not able to communicate her needs, she may be getting more and more frustrated which can make her other behaviors come out so much more often.

Also, these two therapies are much more likely to be covered by insurance than the ones listed under "mental health." (From my experience, also not living in the tri-state area.)

The psychologist might be able to give you some skills to work on in the meantime, and some tips on how you can help her while you're waiting for the therapies to work out. Things like transitional cues, helping her navigate social situations, etc.

An early evaluation is worth a LOT. My son was diagnosed at age 5, and I remember having all of these fears. I couldn't imagine how he could grow up to live a "normal" life and be happy and successful. He's now 14, just started mesivta, and is doing so well. He gets along with his peers (which is a HUGE step forward for him) and has for a couple of years now. He even has a boy or two that I think consider him a good friend, and he considers them his friends too. He's happy and productive and learning well, and for the most part enjoys school. We as his parents still see some areas that need work and growth, but I think an outsider would see him as a typical teenage boy.

I'll be honest, it took a couple of years and some medication for us to see any major improvements -- probably around age 7 or 8. Medication was a big part of it for us. His siblings went from living in fear of his outbursts and getting frustrated that he always dominated our attention, to tolerating him as a sibling, to actually looking up to him to some degree, wanting his approval and asking his advice on things. (He's the oldest too.) He's actually closest now to the sibling that really despised him when they were young. I have no idea how it happened, if you'd asked me 10 or even 5 years ago I would have said it never would, but it did.

Just to say...There is hope. You never know what's coming around the corner. Kids surprise us, and growth happens in amazing ways. May you see much nachas from her.

Page 1 of 1