Really struggling

[mommyatty]

Today (I guess now technically yesterday), we took DS to his pediatrician for his med check for ADHD. I had posted here a while ago that when we took him for his education psychologist evaluation, she told DH that DS’s depression is off the charts. And said, “He needs to be on a mood stabilizer now.” So I kind of freaked out because mood stabilizers are what you give people with bipolar disorder. We talked a lot with DS, and talked with him about how important he is to us, and how we really want him to be happy and healthy and okay. We talked to him about how there is medicine to help with sadness and that maybe he needed that. He appeared okay, so DH and I decided we wanted to wait to see the pediatrician because we wondered if what DS called “the sad questions” (do you think of harming yourself, do you feel worthless, do you think your family would be better off without you, which are the screening questions for depression) were actually making him feel worse. We decided to just give him a break.

Right around the same time, we upped his dose of ADHD meds. Like 5 days before the screening. So Monday we had his parent teacher conference and his teacher mentioned that in the past few weeks, she wondered if we had changed his meds because he was so much better. The negative self talk has decreased significantly. He’s more engaged. He’s joking and laughing more. His reading teacher also came in and said how well he’s doing and what an improvement she’s seen in his mood.

So today at his pediatrician we told her all this. She had gotten the call from the psychologist saying the sky was falling. We told her what his teachers said. And we came to the conclusion that we can wait on antidepressants since he seems to be doing better. She also said the psychologist was misusing the term “mood stabilizer”. But she also told us the psychologist found enough evidence to support an ASD diagnosis, an ADHD diagnosis, and depression.

Here’s where I’m struggling. I know an ASD diagnosis isn’t the end of the world. But it feels like it is. And I’m not sure I agree with it. When I started reading about how to help your child with ASD, there was a ton about calming tantrums. DS has literally never, ever had a tantrum. He talked to his doctor today about his medicine and how he feels on it (it helps me not do inappropriate things where I shouldn’t but I still have fun when I take it. Just maybe I don’t do things I shouldn’t.) when I said I wondered if it was dampening him too much. He’s very empathetic. He loves to be snuggled and touched and tickled. He doesn’t fixate on a particular topic. He just… doesn’t have the typical markers of ASD. BUT, then I think he does have a hard time holding eye contact. And he’s rigid in his thinking. And he struggles with making friends. He would rather play alone than with others and has limited endurance for being away from home. He’s super sensitive to sounds and smells and foods. His doctor said if he’s truly on the spectrum his juuuust over the line. That he would have been diagnosed with Asperger’s back when that was a “thing”.

I’m just struggling. I know he’s the same kid he was 24 hours ago with the exact same struggles and strengths and weaknesses. But this diagnosis feels really big and scary and like the end of the world. And I didn’t have anywhere else to put it, so it’s here.

[mae0111]

I am running out the door but I didn’t want to read without responding. I will write more later. But I hear you. I’m thinking of you. It’s difficult knowing that your kid may struggle. You’re a great mom for pursuing this.

[waverly]

I’m sorry. I don’t have experience with this but my neighbors do. He was diagnosed as severe ADHD then it was autism. This was a while ago but I know they weren’t sure on the ASD diagnosis. I don’t know what the final outcome in terms of diagnosis was but I know the services were the same at school. So ultimately the label whether ADHD or ASD was not as helpful because what they were doing was what was best for the child regardless of diagnosis. The child with the uncertain diagnosis has come to a point where they are doing well. A lot of people say the diagnosis is so helpful and life changing. But I think for those kids right in the cusp it’s like you never know. And in some ways that makes it harder.

DS has sensory processing disorder so he’s on the cusp of or presents like ADHD but it’s really hard to know if he actually is or not.

[rere]

I'm not an expert in any of this, but I do know many kids lead great lives into adulthood with a ASD diagnosis.

As far as the depression, I have only dealt with kids on a limited basis, more in an adult. But I think it is great you are following your instincts. I have seen meds given to the point of detriment, and then having to wean off them, and then cycle again. The best thing is you have a team and giving you and him the language needed to express how he feels and making decisions from there.

[mae0111]

I have two neurodivergent kids, as you know. DD1 is ADHD and NVLD (ASD is a common misdiagnosis for NVLD, so some similar traits). DD2 is ADHD and we are waiting for her full report, but her profile was almost identical to DD1's, with a hefty level of "get her into therapy now" depression.

I was finally diagnosed with ADHD over the summer, at age 46.

I really don't have any advice, but I went through a very difficult time when I received DD1's news. Until very recently, I truly felt that she would never be able to live independently. Like, I wanted to write that into our estate plan, I wanted to financially plan for supporting her for the rest of her life. I felt like I'd failed her in so many ways. And I felt the same way with DD2's diagnosis. I cried a lot. I blamed myself for not managing things better here with DD1 (because that's a big source of her depression).

I would say to make sure that you have proper support for yourself. I don't, and I'm so far past the point of burnout that I can't even find the energy to find a therapist.

One thing I found for DD1 is that there is a lot of comfort in consistency and repetition for her. I no longer really push her to find new books to read. She reads at a 12th grade level and has since 4th grade, but she likes to read the same book series over and over again... so I let her. I'd like to re-do her room, but she wants it how she wants it... so I'll leave it alone. I wonder if your DS might find something like that to find comfort.

[mommyatty]

Thanks, everybody. The other interesting thing to me is his ADHD was originally also a “right on the borderline” diagnosis, and it’s inattentive type, not your typical hyperactivity. So this isn’t one of those situations where his ADHD is simply so severe that it’s crossed over into ASD.

And I guess his doctor and both psychologists (his therapist and the one who did his evaluation) think the first evaluator was crap. So bad the second evaluator said she was pondering if she needed to turn her in to the licensing board. So I’m also pissed we paid thousands of dollars and lost three years of chances for intervention because the evaluator our school recommended sucked.

[mae0111]

mommyatty, we also had a sh!t evaluator for DD1 at first. She was out of Mass General, a very senior member of the staff and taught at Harvard. I figured she knew what she was doing. The report that I received from her was like a garbled stream of consciousness, with hard numbers at the end. She was also a grump - which is a tough trait when working with kids. She said that DD1 did not have any diagnosis other than some executive functioning issues. 2 other therapists were like wha?

The second DR that evaluated DD1 was like night and day. Comprehensive, well thought out, and great with DD1. After an hour she came out to see me and said, "I'm getting a very clear picture of her," and then spent another 6.5 hours with her. We tried to have her evaluate DD2 but she left the practice and I couldn't track her down, but we got someone great for DD2.

DD1 is also inattentive, but the executive dysfunction is significant. Looking back, there should not have been any question about her diagnosis. It answered so many questions.

DD2 presents the way you would expect ADHD to present - she's like a little Tigger. That was a straightforward diagnosis. But the process with DD1 was really tough.

[AdaraMarie]

I'm sorry to hear that you're struggling I know how isolating it can be to have a kid who is different in some way. My kid has been diagnosed with asd, adhd, and anxiety and the symptoms overlap so much I sometimes wonder if they are all "right" but for me I actively sought the asd diagnosis because regardless of label I knew my kid needed more help with emotional regulation and social skills and that diagnosis is what I needed for insurance to cover OT. It didn't change anything for her at school where she has an IEP for "severe emotional" needs.
Although they have similar diagnoses my kid is very different than yours and I would say take what is useful from the diagnosis (if anything) and leave the rest.
If having a potential reason for his rigidity helps you or if maybe he is depressed because he doesn't "get" other people and understanding a potential reason why might help him...great. If that doesn't feel true or right or the "label" isn't helpful, you don't have to do anything with it.
And always reach out to others here or in real life :hugs: your feelings are valid and worthwhile.

[traveltheworld]

You already mentioned this, so I know you know this - but it doesn't really matter what the label/diagnosis is. It's just another piece of information that could potentially help in finding the best support for your DS. Even if you don't 100% agree with the diagnosis, it might introduce you to a new/different set of intervention techniques and resources. My DS was a very difficult child and his psychologist diagnosed him as borderline ASD when he was 4. We learned and applied some of the techniques from the ASD toolkit. Those are techniques/strategies we would not have explored and tried if ASD wasn't on our radar, and we felt it has really made a difference for him over the years because we got the diagnosis and tackled the issues on early.

So I think exactly as AdaraMarie, said, use that information if it helps you; if it doesn't, then don't worry about it. Ultimately, it's about having as much information and as many tools as possible to help him.

*big hugs* Kids stuff are so hard.

[mommyatty]

traveltheworld, our pediatrician also mentioned that ASD advocates are much more effective than ADHD advocates which means the ASD diagnosis opens us up to a lot more support and insurance coverage for therapies. So her view was it’s a good thing, not a bad thing.

A funny aside. Our pediatrician is also a friend. Her son went to kindergarten with ours and they were buddies. He also has ADHD. She has an older son who has a whole host of issues including ASD and ADHD who she describes as “a real life Sheldon Cooper.” She has ADHD and is a renowned expert on ADHD. And her joke yesterday was “The ASD advocates are more effective than us ADHD advocates because they can actually organize stuff!”

[mae0111]

mommyatty, I am laughing about ASD vs ADHD advocates...

I often want to scream, "Why am I, the mom with ADHD and executive functioning issues that I've worked on for YEARS, the one in charge of keeping my kids organized and maintaining their schedules? Do you have any idea what kind of brain power this takes for me? WHY DO YOU THINK I'M EXHAUSTED ALL THE TIME!!!"

DD's therapist has ADHD and it shines through every time I speak with her. But that's what makes her so good at dealing with my kids. She knows all the tricks and anything my kids have tried, she's done it (behaviorally speaking). But she bills us like every 6 months and her calendar is a mess.

So the two of us together trying to keep things straight with my 2 kids? It's a sight to behold.

[traveltheworld]

mae0111, it's interesting that so many psychologists and therapists struggle with these issues as well. DS's psychologist has severe ADHD, she is amazing; but has such low executive function that we once got a bill that was from 2 years ago. And I have to constantly email/text her to confirm appointments etc. Hasn't stopped her from being amazing at her job, which, frankly, gives me a lot of hope and comfort as the mom of a 10 year old who still has the executive function skills of a 5 year old.

[waverly]

traveltheworld, my theory on that is that many that go into psychology are doing it to figure out/ research their own issues. I am many are great and successful at it, and then you have the ones that aren't, which typically aren't practicing thankfully.

[vasc]

I have nothing more to add other than you’re an amazing mother for getting the evals and therapies he needs.

As a public school educator I see so many kids who don’t get any of that….current case is a nearly non-verbal K5 child who so clearly has Autism and yet never has been in early intervention or anything. I don’t even think a physician has laid eyes on him since his birth! 😢😢

[twinmomma]

I just want to say that you are doing an amazing job for your son. You've sought out all the evaluations and supports he may need - including a brand new school!

I know exactly how you feel, as we're navigating the same things with DD2. ADHD, anxiety, OCD, and honestly, I strongly suspect she's on the low end of the ASD spectrum. School says no because she's so social, but she's very awkwardly social with a low ability to read social cues from peers.

It's a real mind game to be pushing and pushing for these labels and a diagnosis because you just want to know what the issue is. And then you get it and it hits you that now it's real. It feels like the label will fix it, because then you'll have a plan of attack. But you also have to cope with the label itself. It's a change in your identity too - you're now a mom of a kid with XYZ diagnosis.

Just remember - it's just a label. He's still the same kid he was and you're still his amazing mom. I'm sending you so much support as you navigate all of this.

[sdlaura]

mommyatty I’m sorry - that’s a lot to take in. It sounds like your son is doing well lately, in your opinion, and so personally I would try to focus on that and just try to use the diagnoses as a means of opening up more resources if/when he needs them, like a PP mentioned. Sending hugs.

[supertrooper1]

I don't have anything to add but want to say I'm sorry you're struggling with this. You're doing an amazing job being a supportive parent and getting him any help he may need.

[mommyatty]

Yesterday DS decorated pumpkin cookies at school. He made them have sad faces and asked his teacher to send me a picture and say “This is my life.” But she said he was having a good time decorating the cookies. When I asked him later if he felt like maybe he did need the new medicine for sadness, he said he did if it wasn’t a pill. So I looked it up. Not only is it a pill, it’s a pill you can’t crush. Gotta swallow it whole. So I sent a note to his pediatrician asking if there’s one that’s not a pill. And I ordered something on Amazon that’s supposed to make swallowing a pill easier. We will try it when it gets here with candy and hope we can just take the pill.