child with emotional disability

@llowe3 (24)
United States
July 28, 2009 11:55am CST
M child is nearly eight. He was diagnosed with bi-polar disorder a few years ago. Because of his disability, I have been unable to work, to put him in programs such as soccer or music lessons, summer camp, etc. I am waiting on his admittance to the EFMP program the military offers for dependents, hoping to get some respite care. I'm running out of fuel to keep dealing with this. I'm tired of advocating for his rights at school, where the faculty seem to work against you instead of with you. I am tired of him losing friends and causing me to lose friends because of his radical behaviors. I am tired of worrying. I am tired of being embarrassed. And I am so tired of feeling like I am in a war with my own kid. I wish I could get away more often, and enjoy my life before I can't anymore. I am looking to share with other parents, to hear their stories, advice, or just words of inspiration. Thanks.
5 responses
@maximax8 (31053)
• United Kingdom
29 Jul 09
With a special needs child life can be more demanding. There can be lots of meetings to attend to and staff have to be aware of how best to handle a child. I am a primary school teacher. I have taught many different special needs children. The one that found social events difficult was the autistic boy. One time the fire bell went off and he found that really distressing. A band came to visit and they played drums. He put his hands over his ears. I am a parent of three children and my second son has spina bifida. It means he can't walk and he needs catheter care. He has many professional people involved in his life. I have found it excellent to meet other parents from his special needs playgroup. They have given me valuable information. Having my son was like a mystery for I was to find out about all the wonderful support I could get. My son goes to playgroup three sessions a week, has a portage session and sees a disabled support worker every week. I am sorry to hear about your son's depression. Good luck.
@llowe3 (24)
• United States
30 Jul 09
Thank you for sharing. Caring for a child with a disability is a humbling experience, and I think you are right it is a mystic journey of sorts. The world opens itself up in ways I could no have imagined. It is a very difficult time for all our family, however, I know when it's all settled, I'll look back and think, "Wow, I learned a lot." I guess the best purpose in all the angst is helping others get through. Have a good week. :)
• United States
28 Jul 09
Been there done that. Twice. And they do grow up! School- go to EVERY meeting. You have to or you will lose the involvement. Just think of all the parents that never show up..... My kids thought of me as always being there and it was a good thing. There are things you can enter the child in you may have to be on the side lines but it works. I crocheted right along him in the music lessons and it worked. Yes a challenge but it can be done. As for a job I took them with, delivery papers etc. They can go with. Yes a challenge but it works. And just remember they do grow up! And the day they say thanks and they will it all is worth every single minute.
@llowe3 (24)
• United States
28 Jul 09
I would love some more ideas about jobs where I could bring him along with me. I am also thinking of volunteering at the school he's attending this year. Then I can be there when he has an episode, instead of coming after the fact. I don't know if that is a good idea or not. Did your children ever require medication? In that case did it produce any successful results? How are they managing the disorder now that they are adults? thanks!
@cripfemme (7698)
• United States
16 Aug 09
I have a disability myself. Bi polar disorder can be a hard impairment; I have a mobility impairment. No emotional issues though. My advice is not only to advocate for him, but to teach him to advocate for himself. in my opinion, it's never too early to start teaching him. Let me know and I can send you resources. I have a friend who has a bi-polar 12 year old (along with some other disabilities)
@meandmy3 (2227)
• United States
28 Jul 09
I wish I could tell you your journey is almost over but in truth you are only just beginning, you have a ways to go. Sorry.. There are many online and live groups that are there to help families going through things like this. Do you have an outlet for when he is at school, something to distract you?
@eileenleyva (27562)
• Philippines
30 Jul 09
Hi llowe3. I am probably not in a position to respond to your plea. I am not downtrodden with a special child. My brother has one though and we call him Louie. He is 13 now and as huge as a teddy bear could be. My 74 year old mother is tasked to take care of him, from preparing his food intake to cleaning him with toiletries. Louie couldn't talk. His pinches had been hurting, The teachers, the classmates, the bus drivers... all had complained and given up on my nephew. But my old mother wakes him up with songs each morning. She cooks food for Louie even of her legs ache with severe rheumatism. She rushes from the nursing home where my father had been confined just to meet Louie at the doorstep when the school bus delivers him home for lunch. Louie had been nothing but a blessing to my mother.