My daughter is almost 11 and she was just diagnosed with combination ADHD last June. She has no hyperactivity to speak of, but she gets lost and distracted very easily. The emotional disregulation lately is unreal and i'm at a total loss what to do at this point. She is on the lowest possible dose of Vyvanse since September. We've really only seen her family doctor so far, and he has been wonderful with her. She has a very hard time communicating. He is the only one that she has spoken a single word to so far when taking her to see any professional. I'm starting to think she may be somewhere on the autism spectrum as well. She and I had a confrontation/meltdown last night that lasted over half hour, over choosing a pair of pyjamas. After the initial half hour, i suggested we take a 5 minute break and come back to the conversation once we both cooled off a bit. After that 5 minutes, I suggested she take a bubble bath instead of a shower, which she delightfully accepted. She then finally told me that the reason for the meltdown was because she didn't like the texture of the shirt I chose for her. I feel like I'm writing a book. There are so many factors to take into consideration. When she gets even just a tiny bit overwhelmed, or feels any kind of pressure at all, she had a total meltdown, and then completely shuts down. Won't talk to anyone, not a single word. She has food texture sensitivities (I almost accidentally made her throw up at my kitchen table once for getting her to try cauliflower tater tots). She is very sensitive to noise, but only certain noises. She plugs her ears in the shower because it's too loud. I have to cut tags off her clothes. She will only wear certain textures. It once took her over an hour to shower because she kept getting distracted. It should also be noted that she has been going through puberty as well, so that's DEFINITELY not helping. And as much as I would love to take her to see a pediatrician, the wait lists where I live are insane. HELP!!!!! 😵💫
New to all this, and feeling so lost - CHADD's ADHD Pare...
New to all this, and feeling so lost
A few quick thoughts as I have to run but read this and will try to write more later. I would run, not walk, to get referrals from your regular doctor for: a diagnostic evaluation for autism, a referral to a pediatric speech therapist if there’s 1 in your area, and I would read about executive functioning and what it means to have deficits in those areas. Also, I would ask her school to evaluate her for at least 504 support if not an IEP. I would bet she would qualify for an IEP based on a delay in pragmatic (social) communication based on your description. Hugs to you. I am a mom of 2 kids, both of whom have autism and ADHD.
She is already on an IEP (kind of). I have to say, our school sucks when it comes to knowing how to deal with children with ADHD. However, they are the ones who got the ball rolling on her diagnosis. They have a school psychiatrist who did her initial evaluation last June. Then I had to take that evaluation to our family doctor for her official diagnosis. There is no pediatric speech therapist in our area that I'm aware of, however, they do have an occupational therapist and a speech therapist at the school that she's supposed to be getting referrals for, although it's very slow-going. And now with school being out for the summer, not sure where to turn now. The wait lists for any kind of specialist in our area are at least a year long (Nova Scotia, Canada). Just curious, but what would a diagnosis of autism do? As far as I knew, there aren't really any "treatments" available for autism, not here anyways. It should also be noted that I was a Teacher's Aid for 2 years, and that's the only reason i know ANYTHING about what's going on with my daughter. I'm very grateful to have had that experience, I feel better able to help her. But with super limited professional help in our area, I worry that my help isn't enough. I'm so tired 😒
Can she get a speech evaluation by the school speech therapist? Specifically including social communication skills (not just pronunciation, etc)? I just meant a therapist trained to work with kids. Some kids with autism can improve their social skills with Applied Behavioral Analysis Therapy, and that’s typically only covered by insurance with an official autism diagnosis. However, I recommend not feeling bad if you can’t access ABA therapy, because it doesn’t magically rewire a child’s brain.
I found that an autism diagnosis explained a lot about our 2 kids’ behaviors and has gotten our DD child lots of school support. Our son, with a gifted IQ, gets zero support and that’s my fun project for next school year (changing that situation). Knowing our son has ASD has helped my husband and me parent him better, and have more compassion when he struggles. Previously we just got really frustrated, thinking “why can’t this smart kid get it together?”
But I totally understand the feeling that it doesn’t suddenly mean there’s a magic solution, pill, etc. I struggle with that sentiment daily as I see our son struggle. Our daughter has such significant delays, she doesn’t know she’s different, and it’s somehow a little less painful. Finally, with a diagnosis you at least join a community of parents who “get it.” I hope this helps.
PS A couple of resources I’ve at least found useful:
Bill Nason books (3 volumes) — The Autism Discussion Page (summaries of his Facebook page of same name)
UC Davis Mind Institute - ADEPT (Autism Distance Education Parent Training program)—free online behavioral training modules
I'll reinforce what Knitting20projects said, there is no magic cure no matter what is going on with your daughter, but getting a complete and correct diagnosis will help you understand your daughter's needs and challenges better, will help you access services to help her develop skills she needs, and will help you work with her school to put the right supports in place.
In my family's case we've had to drive over an hour one way to Boston to get my youngest son diagnosed as a child as he manifested multiple development delays, and to get him the services he needed. We are also in the process of getting a neuropsych evaluation for my older son who has ADHD which we are hoping will give us a comprehensive diagnosis that we can use for his development and education. I know the healthcare system in Canada is a little different than here in the US and it sounds like you may not have direct access to as many healthcare providers in your area. It might be worth looking into virtual/remote consultations and services as well as the other members responded. Again, maybe it's different in your area, but some services like speech therapy can be done virtually these days. ABA and other services may also be available virtually or in home.
It sounds like you are doing your best for your daughter and you are learning what makes her tick and trying to help her be successful. I know first hand how hard it can be when you are still figuring out what is going on with your child and when things seem really difficult. There are lots of people here who understand what that's like and having other people that understand and that you can lean on is really important as a parent too, so don't lose sight of that.
We have VERY limited professionals in our area, and it's a problem in our entire province. I would be looking at an 8 hour drive minimum to the next province, and even their resources are limited. I really wish virtual help was an option, but she did so horribly with online learning during our covid lockdowns, I can't see her being willing to even try it unfortunately. I am currently taking another course online about ADHD in girls, hoping to gain a better understanding of her specific needs. I don't know anyone personally who has a girl with ADHD, so it's hard not having anyone to chat with about it. I'm very glad I found this place, I feel better already and I only joined yesterday.
There are also online training programs for parents in regards to autism or applied behavior analysis. There are some studies that show these can be helpful for families in remote or rural communities which sounds like you. I don't have any experience with these personally. Also without a confirming diagnosis they may or may not be helpful.
Have you had her evaluated by an occupational therapist? They may be able to help with the touch and sound sensitivities.
An autism diagnosis can be very helpful to the person with autism. People on the spectrum often describe the relief they felt at finally having answers for why they experienced the world the way they did and a new sense of community. Moving into adolescence, where it’s normal to want to fit in, it can be especially comforting to establish connection with others experiencing the world in a similar way. Autcraft is a Minecraft server just for young people on the spectrum. There are other ways to connect. In person or virtual social skill groups led by speech pathologists who teach social thinking can also be helpful.
In addition to helping the child’s well-being, a diagnosis or further work up offers explanations and avenues of treatment that are markedly different—and more effective—than those for vanilla ADD. OT for sensory sensitivities and explaining how they lead to anxiety and fight or flight ( mutism) as well as fine motor/ handwriting and emotional regulation; Speech for understanding the missing social piece; therapy for parent training in positive parenting techniques like those recommended above, and to aid in advocacy and educating those working with your child.
A autism diagnosis also provides additional support and resources, much like this forum for ADD. There may be autism associations that you can reach out to that can guide you on in person and virtual resources and sources of help.
Another ASD website with good info and supports for the whole family and teachers, even if you don’t live in there area, is aane.org/
The books The Explosive Child by Ross Greene and Differently Wired by Deborah Reber can be very helpful in parenting kids with ADHD/ASD. Debbie Reber is the founder of Tilt Parenting and has a lot of resources on her website as well: tiltparenting.com/about/
I'm glad you found this forum - you are not alone! Hang in there!
I forgot to mention what others have said. For our son, who can understand, the self awareness & ability to learn about autism, etc, has been overall good for him, I think. As our world (at least US/Can) becomes hopefully more open or inclusive, or at least discussing differences of all kinds more often, I hope self knowledge can help him find a supportive community someday. I don’t mean to excuse certain behaviors, but to understand them as a manifestation of underlying deficits he’s still working on. He and I have really worked on communicating and understanding each other. Now he can say, “Mom, I need quiet right now,” or “I’m feeling overwhelmed,” before a meltdown. Like all humans, he is a work in progress and self acceptance is my goal for him. 💕
Just wanted to update: I have made an appointment with our family doctor and am hoping he can point us in the right direction and possibly make a referral for a pediatrician, a speech therapist, and possibly an occupational therapist. Thanks so much to everyone who took the time to reply, your insights have been incredibly helpful and have given me hope.
Best wishes to you and your child 💕
We have a 13yo daughter with moderate inattentive ADHD. She’s been on Adderall since about second grade and really struggles with executive functioning.
I agree with what someone else mentioned about having them learn about their diagnosis. Our daughter has watched several videos on YouTube and still looks for new things to watch which is helped her understand herself better.
I would continue therapy. Our daughter sees a therapist weekly and then we also have a monthly check in with a therapist just to discuss how she’s doing and any issues.
We took her off meds for the summer to help with weight gain and that’s been stressful with the increase of symptoms. But it did lead me to realize that just getting prescriptions from our pediatrician is probably not good enough. We’re going to talk to a therapist who can prescribe to see if there are better options.
The full evaluation would be great even if you do have to go a different town to have it. I really think it’s key to understanding the full picture of your child.
It’s all stressful and overwhelming. ❤️
She sounds so much like my grandson who I have always felt is on the spectrum. When he was younger, now 17, he did not like tags in clothes, liked clothes to fit snuggly to the point I would often have to take them in, did not like certain fabrics, most socks needed to be seamless. I could go on.
With maturity and medication, he has gotten so much better although his anxiety has gotten worse. We have a good child psychiatrtist, he sees a counselor. He used to be very outgoing but now sometimes just going to the store makes him anxious. It is always something.
The not talking sounds more like a reaction to anxiety than a speech problem. She can express herself when she feels like it right?
Hopefully your doctor will point you in the right direction. Pediatricians can only go so far with ADHD unless they are specialists. Good luck.
Not what you're looking for?
You may also like...
New to this and I feel lost
So lost
Feeling so helpless, feels hopeless
Progressively worse stimulant side effects
Suggestions Please! New Extracurricular Activity for 10 year old gal
New to parenting ADHD diagnosis child.
Just lost it
Can i ask if your child has lots of sugar do they show worsening symptoms please
So heartbroken with our meds journey
