The future

[Origins]

My son is 9 years old, he has autism and Adhd. He was diagnosed at 2 years and 8 months and he has gone through therapy since then. His sensory issues are so severe that even the sound of the rain, a barking dog, a chirping bird several meters away can wake him up in the middle of his sleep. He is sensitive to bright lights, some textures, and even trimming his fingernails feels like root canal for him.

While I was reading books about autism, I realized I may have it too. All those issues about milk allergy in my infancy, underweight issues, sensitivity to light, and being made fun at in elementary and high school all made sense. I’m too clumsy in sports, games, and dancing. My body cant feel the rhythm in dancing, and I miss the right moment to spike the ball even if Im very well prepared. But Im good at math and literature. So, my classmates also respected me somehow in academics.

Adulthood came, and I just overcame a lot of these issues. I thought that I was just a bit quirky in my childhood. I was a university instructor for 3 years and a language teacher for several years before I got married. I quit my job when my son was 3 to look after him better.

Yet his improvement is so slow, despite OT, sped, and speech therapy. Some of his symptoms are getting worse more than his therapy is helping him improve. He has taken ritalin for a month now, and im still waiting for improvement. I live in a country with little support for special needs. To get good therapy sessions, every payment must come from your pocket.

Im not coping well, i think im insane, depressed, a nervous wreck with panic attacks all rolled into one. I feel like being choked everytime I wake up with little energy to sustain my day. I feel sorry for moms with autistic kids who took their lives. I’m an aspie who is learning to love the world and now forced back into my cave in order to take care of my son. Psychiatric help in my country is too costly. Every penny that I save goes to my son’s OT sessions.

Will the future ever get better? How can I cope? Do children with severe autism grow to be high functional later?

 

[OlLiE]

i think i can understand the stress, you want the best for your child, you know it won't be easy with an uncertain outcome, and not knowing if it will get better one day, that can not be easy,

on the other hand he is your son, if you focus too much on what stresses you about him or makes your life more difficult, you may miss the things that make him a good person/child. Despite recognising the 'burden, i would guess that pulling strength from what makes him special to you would help shoulder all the extra effort and sacrifices that you have to make on a daily basis

i am high functioning, so i don't know if this relates to your son, but one of the things that upset me the most as a young child was the constant awareness that i didn't belong, that i was different and the fear of being judged or unliked by my peers because of it. If i had had parents that understood me as a child and had made home a 'safe' place where i didn't have to worry about those things, i think i would have had a much nicer childhood

he's a kid, all he probably wants is to be accepted, loved and to feel safe, no different than other children despite the outward manifestations of his condition that make him harder to approach

all the best and good luck

 

[OlLiE]

ps, i am highly sensitive too, mainly sound and light, then touch and textures.

there are some pretty straight forward and easy solutions for them though:
- at night: earplugs, i got form fitted silicone ones because i couldn't stand the pressure of the foam cylindrical ones, eye mask to block out any stray light
- during day: listening to music or pink noise through headphones throughout the day, sunglasses, hat, keeping the curtains closed in my 'isolation' room
- having a room to myself where i can control my environment and have alone time to recuperate, people know when i am in there that i am recharging and that there is no point in trying to help as their involvement just wears me out more

these things are silent killers, they are always there i the background and wear me out day and night, unchecked this keeps me on edge day and night and decreases any buffers i have to deal with those things that high functioning autism already makes more different

maybe it's kind of the same for your son

 

[Origins]

ps, i am highly sensitive too, mainly sound and light, then touch and textures.

there are some pretty straight forward and easy solutions for them though:
- at night: earplugs, i got form fitted silicone ones because i couldn't stand the pressure of the foam cylindrical ones, eye mask to block out any stray light
- during day: listening to music or pink noise through headphones throughout the day, sunglasses, hat, keeping the curtains closed in my 'isolation' room
- having a room to myself where i can control my environment and have alone time to recuperate, people know when i am in there that i am recharging and that there is no point in trying to help as their involvement just wears me out more

these things are silent killers, they are always there i the background and wear me out day and night, unchecked this keeps me on edge day and night and decreases any buffers i have to deal with those things that high functioning autism already makes more different

maybe it's kind of the same for your son

Thank you so much! His therapists strongly suggest against the use of ear plugs so that he can get exposed to the noise around him. But he is still sensitive to noise, so I guess I will heed you advice. I have to be open to other options this 2018 other than what i used to do for the past years. And maybe I will respect his quiet time. I used to make him do coloring and writing stuff almost forcibly. I will change my outlook and restructure his routine.

 

[Major Tom]

I am the father of a severely autistic/ADHD 5 year old son, and also have HFA myself. I often feel the same feelings you described. My son has yet to speak and I often worry about his future. His progress is also very slow, but in my opinion any progress is good progress. My country is also way behind the times as far as neurological and psychological disorders go. Thankfully though, we have nationalized health care, so everything isn't out of pocket.

To me it seems like you are on the right track and I only wish all the therapies you are able to give your son were available here. All I can say is keep your head up, and keep on doing your best. Hopefully things will come around for your family. Hang in there!

 

[Origins]

I am the father of a severely autistic/ADHD 5 year old son, and also have HFA myself. I often feel the same feelings you described. My son has yet to speak and I often worry about his future. His progress is also very slow, but in my opinion any progress is good progress. My country is also way behind the times as far as neurological and psychological disorders go. Thankfully though, we have nationalized health care, so everything isn't out of pocket.

To me it seems like you are on the right track and I only wish all the therapies you are able to give your son were available here. All I can say is keep your head up, and keep on doing your best. Hopefully things will come around for your family. Hang in there!

Thanks, really! I think I have to do things differently this time. I’m frustrated about his slow improvement over the years, but Im just proud that now he can follow simple instructions like turn on lights, put on slippers, etc. Maybe I have to be optimistic no matter how depleted and socially isolated I am.

You are an optimistic dad and I guess you have a healthy outlook in life. I wish you all the best for you and your son.

 

[Major Tom]

Thanks, really! I think I have to do things differently this time. I’m frustrated about his slow improvement over the years, but Im just proud that now he can follow simple instructions like turn on lights, put on slippers, etc. Maybe I have to be optimistic no matter how depleted and socially isolated I am.
You are an optimistic dad and I guess you have a healthy outlook in life. I wish you all the best for you and your son.

When our children are concerned all we can do is hope. You aren't alone, and I really do sympathise with your situation. One thing I do know from my own experiences with autism is that even if we may not react as one would expect, we often can sense how others are feeling. So if you keep a positive outlook, hopefully your son will feel that positivity and it will help him with his ongoing struggles. Things will get better, I know it. Time is just necessary, and a saintly amount of patience. If you ever want to compare notes or just vent, feel free to shoot me a private message. There are also others on here in similar situations, and I think if we band together, we can make the world a better place for each other and our children.

 

[Fridgemagnetman]

Just checking in on my oranges

Its good when you find people with similar lives and problems,
I'm confident you'll find help in sharing.

Like what major tom said. You can't beat that!

 

[OkRad]

You are a mom and you know your kid. This is just my experienece, so don't take my words to be the gospel or anything. But....."They" were telling me mom all sorts of things about me. Make her do this or that or don't let her do this or that (thinking of the way they said No Earplugs to your son!! That is stupid imho! I have extreme sensory issues, too, and I can assure you I wear earplugs always and when I did not, there was no "getting used to it all!" There was only pain and suffering---end of side note).

Anyway, my mom followed "them" for a long time and I never got anywhere but frustrated. Then she home schooled me and let me do what I needed to do and stopped listening to all "those" who never helped me despite my trying so hard and my parents trying so hard.

I found coping skills. I am High funtioning as they say, but VERY LOW FUNCTIONING in the NT world. But now I know my safe places and that is my family who stopped listening to idiots who ADMIT they don't know much about Non-NT people. How can they advise if they don't know??

Turns out I have a rare genetic anomoly and my parents were right. They could have hammered me to death and it would not have changed anything.

I have much more peace now when I stopped kicking against the pricks as they say. I don't know what that means but it reminds me of Marcus Aurelius when he said pigs going to the slaughter can either scream and kick or just walk along. I choose to just walk along now and that's peaceful.

 

[Origins]

You are a mom and you know your kid. This is just my experienece, so don't take my words to be the gospel or anything. But....."They" were telling me mom all sorts of things about me. Make her do this or that or don't let her do this or that (thinking of the way they said No Earplugs to your son!! That is stupid imho! I have extreme sensory issues, too, and I can assure you I wear earplugs always and when I did not, there was no "getting used to it all!" There was only pain and suffering---end of side note).

Anyway, my mom followed "them" for a long time and I never got anywhere but frustrated. Then she home schooled me and let me do what I needed to do and stopped listening to all "those" who never helped me despite my trying so hard and my parents trying so hard.

I found coping skills. I am High funtioning as they say, but VERY LOW FUNCTIONING in the NT world. But now I know my safe places and that is my family who stopped listening to idiots who ADMIT they don't know much about Non-NT people. How can they advise if they don't know??

Turns out I have a rare genetic anomoly and my parents were right. They could have hammered me to death and it would not have changed anything.

I have much more peace now when I stopped kicking against the pricks as they say. I don't know what that means but it reminds me of Marcus Aurelius when he said pigs going to the slaughter can either scream and kick or just walk along. I choose to just walk along now and that's peaceful.

Thanks, now Im still thinking of a better approach. Ear plugs and redesigning his program are my top priority.

 

[OlLiE]

Thank you so much! His therapists strongly suggest against the use of ear plugs so that he can get exposed to the noise around him. But he is still sensitive to noise, so I guess I will heed you advice. I have to be open to other options this 2018 other than what i used to do for the past years. And maybe I will respect his quiet time. I used to make him do coloring and writing stuff almost forcibly. I will change my outlook and restructure his routine.

if you use headphones external noise is mitigated, but you are still hearing music, the question is if he likes music, i only use my earplugs for sleep

 

[Origins]

if you use headphones external noise is mitigated, but you are still hearing music, the question is if he likes music, i only use my earplugs for sleep [/QUOTE

I will get the big ear muffs/protector first and see if he can tolerate them. Thanks.