Anonymous
Post 07/22/2016 08:07     Subject: I'm lonely and sad and scared today. Positive vibes thread.
Found this thread and it was so nice to read all the support!
Anonymous
Post 07/09/2016 20:31     Subject: Re:I'm lonely and sad and scared today. Positive vibes thread.
Anonymous wrote:I know exactly how you feel. You aren't alone, its just hard when there isn't anyone you know personally in your immediate circle of friends, family, neighbors who is going through the same thing. My son is 5 and will be in a special needs school when he starts Kindergarten. At times I do feel jealous of parents with NT kids that get to experience all these "normal" things - such as 1st day of Kindergarten at a regular school, summer camps, group sports. Right now my son can't handle any of those things. I do hope he eventually will be able to. I think a lot of parents take for granted that their children get to experience just a "regular" life and just assume that is where everyone's kids go to school....

On the flip side, I am happy that my son will be in a school that has very small classes and is specifically for children who have behavioral challenges, along with other things like ADHD, SPD etc. (we are in another state that offers this through the public school district) He has been doing a summer school class to get him started, and he is doing really well and likes school. Yes, he has to go on the short bus and will be at a different school than other neighborhood kids, but for now its what will work best for him. And right now he is actually oblivious that he is going to a different school. I'm sure at some point he will figure it out, but for now he is happy.

It is OK to vent and be sad and depressed. I go through phases. Just last weekend I was so upset that my son was being super non-compliant. I was on the verge of tears. I kept thinking to myself - gee it must be nice to just have a regular kid....but then I got over it. My son has challenges, but he has a lot going for him and is one of the sweetest and funniest kids I know.

Do you know of any support groups that you could join in your area? It is so much easier if you have someone to vent to about it who understands! Also, if you don't have a therapist, it might be really helpful for you to talk to someone and get all of this off your chest. Hugs to you


In case you aren't from around here the JCC is the Jewish Community Center and you don't have to be Jewish to join or go to their classes and camps.
In general when you want inclusion the Jewush organization in your town is a good place to start.
Anonymous
Post 07/09/2016 20:28     Subject: I'm lonely and sad and scared today. Positive vibes thread.
Anonymous wrote:OP, I'm the poster who recommended Camp JCC. I know sometimes it feels like this forum is dominated by kids with "mild" special needs (not that those are easy to deal with or not deserving of support too), but there is a significant contingent of us dealing with severe lifelong special needs/disabilities and children who will need lifelong care and assistance. Reach out when you want support from our contingent and let people know that moms with kids with severe disabilities should have eyes on your message.

I know that it is hard to discuss personal matters with people who are in essence strangers, but a lot of mentoring goes on from other SN moms/dads during meet ups for our kids as we simply chat like any other parents do. Are you involved in other programs and activities for your child for disabled kids? You might consider:

Lollipop Kids Foundation
Music and Motion
Keen
Gudelsky Swim Program at JCC

Others might chime in with good programs and activities to enlarge your circle.

Don't be lonely and scared OP. The road is long but we're all driving on it.



Hey - yes, one more rec for the JCC. Inclusion is a wonderful thing!
Anonymous
Post 07/09/2016 20:26     Subject: Re:I'm lonely and sad and scared today. Positive vibes thread.
Not sure where you live but I have a severely disabled kid who is a teen now and I sent him to camps.
I just had to make friends with the teachers that he took classes from and then I'd see who could possibly tolerate him in a camp setting.
I found a few takers.

I know that the JCC in Rockville, Maryland takes SN kids at all of their camps.
Anonymous
Post 07/09/2016 18:27     Subject: I'm lonely and sad and scared today. Positive vibes thread.
I don't have any wisdom to add OP but wanted to send you a big hug.
Anonymous
Post 07/09/2016 18:04     Subject: Re:I'm lonely and sad and scared today. Positive vibes thread.
Life is short and fragile. Try to hold onto the love you feel for your family, acknowledge the sad and recognize that not all families with my kids are happy or healthy. Sometimes being imperfect gives one permission to be happy and free.
Anonymous
Post 07/09/2016 14:43     Subject: I'm lonely and sad and scared today. Positive vibes thread.
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:I just don't know anyone else in real life. And on here, where people are so great and supportive, my son's issues always sound more overwhelming and challenging that others. Everyone on here always has a bright, high IQ kid with issues, and I don't think that is our situation, at all. It is just so lonely. I feel like I am always acting at work, when I am asked about him, and out and about. It is tiring and isolating. I need to join some support groups.


OP, hugs. My 3.5 year old is in a special ed preschool as well. I understand the embarrassment but I recently decided to start being upfront with people. There's slight awkwardness upfront but then such relief that you're not hiding anything or acting ashamed of your child.


Yes, I need to do this. I just don't like having to share so much information in what should be an innocuous exchange and I am private and reserved anyway. So it feels intrusive and like I have to explain and I just do not want to. I know, I am probably going to have to get over it. It is just right now another thing I find stressful, dealing with intense conversations about personal matters with relative strangers all the time.


NP here. OP, when my child was younger I found that being vague actually led to more questions from other people. When I finally started saying "Well, Larlo has special needs so he is doing X" the other person would shut down that topic almost immediately. They didn't want to talk about it either. So being upfront may not lead you into as many intense conversations as you think.


NP as well. I agree with the above, but also find that so many others are struggling too. You'd be amazed at how common special needs are - including severe special needs. I've learned so much from other parents.
Anonymous
Post 07/09/2016 13:24     Subject: I'm lonely and sad and scared today. Positive vibes thread.
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:I just don't know anyone else in real life. And on here, where people are so great and supportive, my son's issues always sound more overwhelming and challenging that others. Everyone on here always has a bright, high IQ kid with issues, and I don't think that is our situation, at all. It is just so lonely. I feel like I am always acting at work, when I am asked about him, and out and about. It is tiring and isolating. I need to join some support groups.


OP, hugs. My 3.5 year old is in a special ed preschool as well. I understand the embarrassment but I recently decided to start being upfront with people. There's slight awkwardness upfront but then such relief that you're not hiding anything or acting ashamed of your child.


Yes, I need to do this. I just don't like having to share so much information in what should be an innocuous exchange and I am private and reserved anyway. So it feels intrusive and like I have to explain and I just do not want to. I know, I am probably going to have to get over it. It is just right now another thing I find stressful, dealing with intense conversations about personal matters with relative strangers all the time.


NP here. OP, when my child was younger I found that being vague actually led to more questions from other people. When I finally started saying "Well, Larlo has special needs so he is doing X" the other person would shut down that topic almost immediately. They didn't want to talk about it either. So being upfront may not lead you into as many intense conversations as you think.
Anonymous
Post 07/09/2016 09:46     Subject: Re:I'm lonely and sad and scared today. Positive vibes thread.
I don't know you, but I believe you are doing a great job and your honesty is real. the sadness is real, but it's ok to be sad about this.
Anonymous
Post 07/09/2016 05:18     Subject: I'm lonely and sad and scared today. Positive vibes thread.
OP, I'm the poster who recommended Camp JCC. I know sometimes it feels like this forum is dominated by kids with "mild" special needs (not that those are easy to deal with or not deserving of support too), but there is a significant contingent of us dealing with severe lifelong special needs/disabilities and children who will need lifelong care and assistance. Reach out when you want support from our contingent and let people know that moms with kids with severe disabilities should have eyes on your message.

I know that it is hard to discuss personal matters with people who are in essence strangers, but a lot of mentoring goes on from other SN moms/dads during meet ups for our kids as we simply chat like any other parents do. Are you involved in other programs and activities for your child for disabled kids? You might consider:

Lollipop Kids Foundation
Music and Motion
Keen
Gudelsky Swim Program at JCC

Others might chime in with good programs and activities to enlarge your circle.

Don't be lonely and scared OP. The road is long but we're all driving on it.

Anonymous
Post 07/08/2016 16:38     Subject: I'm lonely and sad and scared today. Positive vibes thread.
Anonymous wrote:
Anonymous wrote:I just don't know anyone else in real life. And on here, where people are so great and supportive, my son's issues always sound more overwhelming and challenging that others. Everyone on here always has a bright, high IQ kid with issues, and I don't think that is our situation, at all. It is just so lonely. I feel like I am always acting at work, when I am asked about him, and out and about. It is tiring and isolating. I need to join some support groups.


OP, hugs. My 3.5 year old is in a special ed preschool as well. I understand the embarrassment but I recently decided to start being upfront with people. There's slight awkwardness upfront but then such relief that you're not hiding anything or acting ashamed of your child.


Yes, I need to do this. I just don't like having to share so much information in what should be an innocuous exchange and I am private and reserved anyway. So it feels intrusive and like I have to explain and I just do not want to. I know, I am probably going to have to get over it. It is just right now another thing I find stressful, dealing with intense conversations about personal matters with relative strangers all the time.
Anonymous
Post 07/08/2016 15:33     Subject: I'm lonely and sad and scared today. Positive vibes thread.
Anonymous wrote:I just don't know anyone else in real life. And on here, where people are so great and supportive, my son's issues always sound more overwhelming and challenging that others. Everyone on here always has a bright, high IQ kid with issues, and I don't think that is our situation, at all. It is just so lonely. I feel like I am always acting at work, when I am asked about him, and out and about. It is tiring and isolating. I need to join some support groups.


OP, hugs. My 3.5 year old is in a special ed preschool as well. I understand the embarrassment but I recently decided to start being upfront with people. There's slight awkwardness upfront but then such relief that you're not hiding anything or acting ashamed of your child.
Anonymous
Post 07/08/2016 15:17     Subject: I'm lonely and sad and scared today. Positive vibes thread.
Anonymous wrote:I just don't know anyone else in real life. And on here, where people are so great and supportive, my son's issues always sound more overwhelming and challenging that others. Everyone on here always has a bright, high IQ kid with issues, and I don't think that is our situation, at all. It is just so lonely. I feel like I am always acting at work, when I am asked about him, and out and about. It is tiring and isolating. I need to join some support groups.


I'm one of the PP's who sent you hugs earlier. Just to let you know there are several of us with children with profound impairments for whom so-called "normal" life will never materialize. My DS is 10 and I don't know if he can ever be left alone in a room, much less function independently or even cross the street himself. For us, while we are doing are best to make things better for him, the worry is constant too. I don't put on an act at work or try to make things seem more pleasant than they are. Pretending would cause me more anxiety. I try live in reality and hope that I am doing my best and look for small, positive steps for him. My Dh and I decided that our way forward is to always emphasize that DS is a joy to us, even those times he's smeared vaseline all over expensive furniture or acted aggressively. It is overwhelming and challenging just like you say. You need to be free to acknowledge that but also not wallow in it. Acting or pretending will make you sick and more depressed, seriously. That doesn't help you or your child. Support groups could help you. I hope this makes some sense.
Anonymous
Post 07/08/2016 15:01     Subject: I'm lonely and sad and scared today. Positive vibes thread.
I just don't know anyone else in real life. And on here, where people are so great and supportive, my son's issues always sound more overwhelming and challenging that others. Everyone on here always has a bright, high IQ kid with issues, and I don't think that is our situation, at all. It is just so lonely. I feel like I am always acting at work, when I am asked about him, and out and about. It is tiring and isolating. I need to join some support groups.
Anonymous
Post 07/08/2016 14:57     Subject: I'm lonely and sad and scared today. Positive vibes thread.
OP, you are doing the best thing for your child and nothing is better for him than early intervention.

My son is a teenager now and sometimes I still wake up and can't believe that this is our life--that we have a special needs kid. It can absolutely be overwhelming and at times, incredibly lonely. I would urge you to not do what I did, and seek out support groups in your area, take advantage of any and all services like respite, and try to live your lives as normally as possible.