Is there real support for neurodivergent people anywhere in the world?

[Nto84]

Hello, world.

Probably I need to tell a bit of my story first. I'm now 38 years old, I was self-diagnosed with ADHD, when I was 36, and my diagnosis was confirmed by specialist in 2022 (there was no point in doing it before, because treatment in Ukraine was unavailable for adults and barely available for children). I remember my state of shock, when I was passing the test for the first time and it was literally describing my life. I guess, you know the feeling.

My house and my life were a constant mess. I was never able to leave home without forgetting things. I regularly forgot to pay the bills, and my procrastination was sky high. I could postpone unpleasant things and decisions for ages, until it became dangerous.

It was 2020, I was still living in Ukraine. When I realized, what was happening with me all my life, I managed to organize some coping strategies for myself. I hired a trustworthy person for cleaning up, though for the first time she came I was dying of shame. I found some workarounds and life hacks for my regular life. I had a wonderful job with the activities and the schedule, which were perfect for my ADHD, and my effort was appreciated. But now it's all gone.

I'm a single mom of two daughters, and both of them also have ADHD. My elder daughter had the mild form, which was successfully compensated with time, because I had ADHD and her father didn't, though some issues still remain. The situation with my younger daughter is much more difficult, because both me and her dad have ADHD (her diagnosis was also confirmed by psychiatrist), and I also suppose that she has Asperger, because she has major problems with socialization and different kinds of social interactions.

Last April I had to take my daughters and flee away from home because of the war. I chose the most close option and we went to Romania. Here I managed to find an apartment, and a very nice job. But overall I am sometimes feeling desperate. When I was living at home the challenges were overwhelming, now they became terrifying.

My younger daughter is 11, she is now studying at home online. She had an experience of severe bullying at school in Ukraine and she is working with psychologist. There is no support of neurodivergency in public schools here in Romania, and there was no support in Ukraine.

Trying to cope with life now takes all my inner resource, I am literally drained, and my worst fear is to fail my daughter. Because I have no support here and I cannot give her all the attention that she needs. My top priority for now is to protect her from the world and keep her safe. But I understand that her lack of socialization will be a major problem in her future. She has absolutely brilliant mind, and she is a gifted artist. But I know that she needs support and development.

I'm also thinking about the long perspective of our lives. I'm not sure that my native country will be a safe place for my children at least for the next decade, and I want to give them a better life. I never thought about the immigration before the war, but as soon as we are already away from home, I started thinking. I'm not sure if I chose the country correctly or maybe there is a better place for us out there somewhere.

So thank you, dear survivors, for reading my story until this point and not getting distracted, I appreciate this very much. 🙃 Here is my question.

Please share your experience and tell me, if there is any kind of support for neurodivergent adults and kids in your country? Is it possible to find an employer who values your benefits and understands your challenges? I know that in many countries schools are now thriving for inclusion and support but it was not like this when I was growing up. My ADHD was not treated and now I have to live with it and to raise my children. So first of all I'm interested in support for adults. Maybe there is a country where it may be easier to cope with life, and I just don't know about it? Maybe it is possible to make my challenges bearable?

I'm sorry for possible mistakes and mistypings, English is not my native language after all. 😉

This is my first attempt to reach out to someone, and I'm feeling vulnerable, so please be gentle.

[ServiceSloth]

hi Nto84. You are safe here with us. I really thought English was your first language, so kudos to you! Your expression was super clear.

Many here know how you feel, and will contribute when able/awake

In my journey, I have moved within the US and the hardest thing indeed is finding support. Because it feels like a gargantuan task.

I think it is easier to find support for kids, but because you are their caretaker, support for you matters, maybe more.

1) are you able to look for good, low to no cost therapy? This was the hardest piece for me, took the longest, can take many calls over time and I would give up and let months go by but I found someone and after the first interaction I began feeling better.

2) are you able to make friends at the kids school w other adhd moms? Could be helpful for tasks, even neurotypical moms, things like carpooling, after school care...good to have a group feeling and people to rely on/commiserate with

3) local libraries as spaces for you and the kids to focus when it is time to hunker down and get things done. It is not home, and is a tidy, quiet environment that can be utilized ~

4) please check out aspergerexperts.com. It was created by two young men with aspergers and everything I have ever wondered about myself or family members can be best supported by them and their free videos, email list stories and the occasional webinar lessons for cost, totally worth it to help your child thrive and not struggle into her young adulthood. and again, finding likemindeds is the key ~ don't worry, we do tend to have "aspie-dar" and find each other

5) there is the meditation / yoga intervention, nature, sunlight, etc all that good stuff. I have been able to stay sober and it is helpful, it led me down a path of time management, which led me towards finding steady easy jobs until i got better paying ones suited to my interests (nannying, dog care, writing).

6) There is also the medical intervention. I also stayed off of pharmaceuticals, after trying adderall for 21 days and didnt care for it, being an amphetamine. My latest diagnosis in my new city did recommend adderall again, but the shortage had been for my benefit. I instead began looking at the various over-the-counter remedies for focus. Different brands at drug stores or online. The ones that are working for me are Moon Juice and Thesis (adaptogen mushrooms). Things are like night and day, I wish I had found them sooner. To each his own, this part of the journey requires experimentation and patience.

7) i am not a mom but have been a step mom and all I know is they watch you. So please also be gentle with yourself, and they will learn to nurture that sense of self love and self forgiveness. The most important piece that has taken me 46 years to truly understand is that its not my fault. Its not your fault. Its not their fault. We are not lazy or stupid. Or crazy (omg you have to get that book!) This is a neurobiological disorder/divergence. Its very real. It is ok to look up "intellectual disability resources" and see how to qualify because the ability to work is truly affected.

8) i understand about having to live like a refugee, after being displaced after a fire, then covid, etc. it can and does take time to adjust. im so sorry for any racism/difficulties of that nature. Good people are out there, and you are one of them. more to come. You only have to take this life one day at a time.

breathe 🌳

[Nto84 in reply to ServiceSloth]

Hello, ServiceSloth! Thank you for your touching reply. First of all I need to say that I had 6 years of personal psychotherapy. And I actually finished it, I didn't quit doing it, though sometimes it seems impossible. 😄 I managed to build a sustainable system inside myself and both me and my therapist agreed that I don't need regular sessions anymore.

It helped me a lot to understand myself, to change my attitude to myself and my children. I definitely realize that no one of us is guilty. Both of my girls have my unconditional love, acceptance, and support. Even more than that – both of my daughters are having therapy now. My younger daughter works with behavioral psychologist since last summer, when she was officially diagnosed. My other daughter is 20 (yeah, I'm the early mom), she is already working, she has my example and she understands that psychotherapy is totally worth spending money, so she found the therapist for herself.

Unfortunately, despite the therapy I had to self-diagnose myself at first because I realized, that something is wrong with me, and I was looking for the answers sporadically and the therapists were not helping in evaluation of my overall condition. We were solving definite problems instead of looking for diagnosis. It took me some time and one important coincidence to realize that my lifelong problems could be symptoms of something different and more global than childhood trauma. But when I did, it took me about a day to find out the right diagnosis.

At first when I found my answers and understood that that's not a disease but a special condition which is incurable and will last for lifetime, it was so hard for me, that I wanted to die. But I felt like this only for couple of days, and then my attitude changed. Understanding myself, realizing my superpowers and limitations was crucial. Of course it helped me a lot to understand the challenges of my children. We all know our specifics and we're okay with it.

Going to the public school for now is not an option. Our distant education in Ukraine succeeded a lot since COVID, so everything can be done online now. My younger daughter has lots of insecurities because in addition to ADHD she also has another diagnosis – precocious puberty. She started to grow very quickly when she was 6, now she has the same height as me, which is 170 cm (5'7"). She doesn't look like children of her age, she doesn't think like them and she doesn't speak like them. Her mind is absolutely brilliant and her level of perception is more suitable for 15-16-year-old kids. But her emotional state is more suitable to her actual age. In addition to this she doesn't understand the social contexts and, she doesn't feel that some things that she says to other people may be impolite or even offensive, and due to this she has major problems making friends. Adding to this the mix of people at school and the language barrier says it all.

I'm sorry, need to get ready to work now, I will continue a bit later.

[ZimmyZimmy]

Hi! I’m in the USA. I was diagnosed ADHD about 2.5 years ago at age 45. I’m currently taking medication for it that has been a dramatic benefit! (Calms the rapid-fire to do lists in my head…and anxiety) my house is still chaos, but I’m a little more calm.

When my psychiatrist confirmed ADHD, he added that I was also high functioning autism (autism spectrum).

I have done so much reading about both subjects, in search for “my people.” I recently found a guy my age who runs a publishing company here in Oregon, and has written several books and booklets about autism, and he was also diagnosed as an adult as autistic. He is helping me find “my people.” Late diagnosed neurodiverse adults.

I think that finding the right therapist is the first place to start.

I am not a parent, nor do I have children around me, but on the last two years of reflection, I would say that being involved with your girls is wonderful. Find the things they like to do, and encourage and expand on it. Find their emotional limitations, and understand that the reason they meltdown is their way of overload release. Be gentle. Allow for stuffed animals and toys! Understand if they need extra quiet time. Look for signs of bullying, but it sounds like they are ok. Teach them to be independent little super heroes, that their neurodiverse brains can be pretty cool!

I don’t know of a good place to move, but I’m sure you can find a community. It may be online for a while. My best suggestion is to keep taking good care of yourself. Try to find some support for yourself. You’re a good mom! Try to find things that you are good at, quirky ninja skills, and try to laugh.

I am a mail carrier. I’m working to get support for myself at work with my psychiatrist. We are filing paperwork through Human Resources to help me work through my stress and triggers. I like the job, it’s a good fit for autism and adhd. I’m outside, it’s never dull, it’s physical, and my contact with people is minimal.

I am wishing you all the best!

[Nto84 in reply to ZimmyZimmy]

Hello!

I feel you because I also had some hard times struggling with myself to accept the fact that I'm good enough. I grew up in the society which was not aware about mild mental conditions, not even speaking about neurodivergency. But they were pretty good in comparing children instead, highlighting drawbacks and trying to make everyone "normal". I was very talented as a child, I had brilliant mind but at the same time I had all the ADHD specifics, so I was considered gifted but inattentive and lazy, hopping from one hobby to another, and my mom and my teachers were constantly trying to "fix" me.

When I became an adult the inner critic was built in in my head and there were no stricter judge for myself than me. I can only thanks to progressive humanity for all the researches and especially psychotherapy, because at last there was a way to fix things inside your head.

Unfortunately my big problem is the lack of resource. I cannot get involved too much with my children because when I come home from work, where I'm talking to people constantly, I'm not a big talker myself. It took me some time of psychotherapy to realize that I need much personal space and time to be okay and remain sane. Of course we spend some quality time with my girls but it's very hard to combine the roles of single adult in the family and involved mother. The lack of the resource for both roles at the same time is obvious, so I have to choose. And I tend to choose myself. Several years ago after divorce I had acute anxiety disorder for a year and then a severe depression for year and a half which literally disabled me, because my cognitive functions suffered and I was not able to work at all. It was a tough lesson for me so I keep an eye on my resource and my mental state constantly, because it can be a matter of survival.

I'm very happy that you could find a job which is suitable for you. Let me double check if I understood you correctly. Your psychiatrist is now in touch with your Human resources department at work in order to make your job more comfortable for a person with ADHD?

[ZimmyZimmy in reply to Nto84]

hi! My psychiatrist has written a letter to my supervisor that helps to explain situations that are making me extremely stressed and causing me to fall into depression, and put me close to nervous breakdown. These situations can be helped if the supervisor will work with me. He also has just filled out paperwork for what the USA has here called Family Medical Leave Act (FMLA) to keep on file with Human Resources that confirms I have a medical condition that requires continued support. It protects me from discipline if I need to call out due to mental stress, or appointments, and things along that line. He is also working with me to write a letter to request Americans with Disabilities Act (ADA) because ADHD is listed as a recognized disability…and requesting that I be relieved from “mandatory” overtime and to see if I can switch my weekly day off, will allow for me to better take care of myself. We are so short staffed, we are regularly told to work overtime. I can’t take it anymore.

I completely understand you. As a child, I too, switched hobbies and sports, had a new collection or interests, and did so often. As an adult I am the same. As an adult, it can get expensive, and I don’t think big decisions through. This has cost me a lot.

I need a lot of personal space as well, and I love quiet time. It is good you see that in yourself. You will be able to take care of yourself, and take care of those girls who look up to you. Reaching out here is helpful because you are not alone. You are doing the right things.

I hope your country has some assistance for employees who need a little different help! You may want to search, or ask Human Resources. I’m now just beginning to file this paperwork, so I hope it goes well!

❤️

[Nto84 in reply to ZimmyZimmy]

As soon as Romania doesn't even have a legal way to prescribe ADHD treatment for adults and some psychiatrists still make big eyes when they hear about that phenomena, I have major doubts that this condition is included into the official disability list. The situation in Ukraine is exactly the same, unfortunately. I don't know how much time should pass to make these things change. The level of support in USA is pretty impressive.

[SilverbackG]

Hi,

I was diagnosed at 56 (last April, 2022) and am now 57 and doing ok with meds (Adderall, 15 mg a day, slow release). My children (2 sons) are now adults, so my home workload it much less than when they were younger. I struggle the most with how I treat myself. I have been working on my "self talk" for most of my life. I have been labeled as a "Type A personality" and I clearly struggle with perfectionism and low self esteem. I am starting to see glimpses of my young self, when I was at university and felt like the future was exciting and new. I have been at my job for a bit over one year, and it has really helped me to find work where my skills are appreciated and I feel supported by others. I had not worked much in the past 10 years (longer story).

Enough of my background. I just want to say that you have found a group of people here who understand. This group has helped me see myself better. I feel like I have found "my tribe" here. Everyone is so willing to help, the sharing of stories makes me feel seen and understood. I guess I didn't know that there are so many other people that were not diagnosed young and really didn't understand how neurodivergent brains work.

I hope you can find support and help for you and your daughters. I send you love and light!

[Nto84 in reply to SilverbackG]

Hello! I don't understand how it happened (well, I do, actually, it's called ADHD 😆) but I mixed up two different replies in my head and replied both to you and the supportive person from the upper thread. Actually, in the upper thread.🙃 Please take a look. 😳🙏

[SilverbackG]

No worries, I read all of the thread, because it helps me too. Thank you for writing and expressing your experiences and your challenges. This group has helped me a lot. When I read the posts, I feel like I have found brothers and sisters I didn't know I had! Yes, we have different types of ADHD, yet the connection I feel is real and really helpful.

[Knitting20projects]

Hi, I have 2 children who both have autism and ADHD, a 12 year old son (gifted) and 8 year old daughter (intellectual disability, delayed motor skills). I have access to many resources in the US, but our biggest challenge is helping our son learn to make friends and have conversations. He is a wonderful kid and still struggles to understand other kids’ perspectives, talk about topics they want to discuss, etc. Our daughter got years of special behavior therapy and has made slow improvements. I guess I’m saying that, even with great access to interventions, I think my children will always have to work hard to make neurotypical friends. I have thought lately that making friends with kids their age with autism might be a good way for them to build lasting friendships and accept themselves as they are. I do not mean I don’t want to help them have the best lives they can. I just think a lot of their interactions are probably not easy to change. I wish your daughter could find a nice friend who maybe also had Asperger’s? Maybe at least she could be herself and feel comfortable around another girl like herself. Hugs and strength to you.