Χά�ων Posted March 6, 2013 Share Posted March 6, 2013 I am so stressed. With DS health and having to drive 1-4 hours to take him to the specialists several times a month plus taking him to therapy several times a week (PT, OT, speech and vision) and doing an intense therapy program at home because I believe in him and I KNOW he can make progress. My confidence is not shared by one therapy center and more than one doctor has given up on DS and think I need to just accept that he won't make progress. After they said that and I got a new OT within a few weeks DS made huge gains. HUGE. He was doing something the other OT said he would never be able to do. The doctor said his disease affected him and that he would never be able to do a certain activity. Know what? I found something new and he can do it. It is slow going but he can make progress. But I am burned out. I am tired. I am not a therapist. I am mom. I am spending so much time being therapist that I do not have time or energy to be mom. I just want to be mom. I am tired of doctors. I am tired of fighting with doctors. I am tired. Quote Link to comment Share on other sites More sharing options...
twinmami01 Posted March 6, 2013 Share Posted March 6, 2013 ((((HUGS)))))) I do understand. I have 2 special needs children and for a while there, it was constant therapy appointments and dr/hospital visits. It is tough. I do understand being tired of drs and tired of fighting with them. Just remember that you are yor child's best advocate. No one else will fight for them, if it's not you. That is what kept me going. Don"t want to step on any toes, but if you don't mind, I will be praying for strength and guidance. Quote Link to comment Share on other sites More sharing options...
TXMomof4 Posted March 6, 2013 Share Posted March 6, 2013 I can't imagine. I'm just a mom and I'm tired - adding all the other on your plate must be overwhelming. Hugs to you!!! Quote Link to comment Share on other sites More sharing options...
sbgrace Posted March 6, 2013 Share Posted March 6, 2013 That sounds exhausting. Do you have any support? Does he qualify for respite care? One thing to remind yourself--and I don't know your son's age or condition--is that development keeps occurring. There isn't a clock where he'll stop progressing when the magic point is reached. It's ok to break. You can just be mom. You can let someone else play caregiver if you have an option to do that. It's ok to take care of yourself--he needs you healthy above all. Quote Link to comment Share on other sites More sharing options...
gardenmom5 Posted March 6, 2013 Share Posted March 6, 2013 have you tried doing any yoga for stress? if you could do even 10- 15 minutes of stress-free yoga, it could recharge you to be able to stay on top of everything. my son has asd, and I couldn't believe the difference in my ability to handle him from before I had ever started doing yoga. Quote Link to comment Share on other sites More sharing options...
Χά�ων Posted March 6, 2013 Author Share Posted March 6, 2013 One thing to remind yourself--and I don't know your son's age or condition--is that development keeps occurring. For his learning disabilities yes. For his health, no. What he has is degenerative and life threatening (it is too early to tell if it will take a fatal course but I am trying to convince myself that the early signs that the pediatrician ignored means that he has had it longer and that he is not on the fatal track) and currently under control with medication. There will come a time when he slides downhill and there is nothing I will be able to do to stop it. Right now under control means slowing it down. I have known what will happen and my goal since they first started testing was to help him push himself physically so he could make a much progress physically before he started going downhill so that maybe he will be batter off in the long run. What he has is rare and finding male children with it is almost impossible and females tend to be different. I have found 2 and both rely heavily on a wheel chair. My son is very far from that point but no where near where he should be for his age and activity level. He works hard and averages 3-4 hours a day of strengthening and cardio and is still weaker then kids who sit all day. This is up from last year when he only did 2-3 hours a day. And I see it getting harder and harder for him. He cannot do now what he could do a few weeks ago. His big thing since last summer? He can now jump over a basketball with both feet together. He can do it 5 (five) times before he has to rest. As for support and respite. I do have respite. But support? Not like I want. Not sure what I want or need but what I currently have isn't it. I feel like I am alone. When I try to talk to people and explain what DS is doing to help him they look at me like I am nuts or treat me like I am a tiger mom who expects my kid to go to the olympics before he is 20. I just want my kid to be alive, healthy and able-bodied at 20! I can find no one who has taken this approach. Yoga - Know of any good youtube videos? Quote Link to comment Share on other sites More sharing options...
NorthwestMom Posted March 6, 2013 Share Posted March 6, 2013 ((momtoone)) Quote Link to comment Share on other sites More sharing options...
mamatohaleybug Posted March 6, 2013 Share Posted March 6, 2013 Hugs - my life was the same way for years but has calmed down recently. I just want you to know I hear you and support wht you are trying so hard to achieve. Quote Link to comment Share on other sites More sharing options...
sbgrace Posted March 6, 2013 Share Posted March 6, 2013 Many, many hugs. It sounds like he is extremely fortunate to have you as his mommy. :grouphug: Do remind yourself that taking care of you is also taking care of him--he needs you healthy and able to continue to advocate and work for him. You sound amazing. I hope you find the kind of support you need. Quote Link to comment Share on other sites More sharing options...
Ellie Posted March 6, 2013 Share Posted March 6, 2013 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
fraidycat Posted March 6, 2013 Share Posted March 6, 2013 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted March 6, 2013 Share Posted March 6, 2013 :grouphug: :grouphug: :grouphug: I'm sorry. I hope you find the support you need. You're doing an amazing job. Quote Link to comment Share on other sites More sharing options...
Laurie4b Posted March 6, 2013 Share Posted March 6, 2013 :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Cinder Posted March 6, 2013 Share Posted March 6, 2013 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Tammyla Posted March 6, 2013 Share Posted March 6, 2013 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
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