Ask:
Do you feel alone in dealing w/your child's special need(s)? Is your dh/significant other in denial?
My dh is coming around a bit, but I think he's getting over the denial stage. I think the problem now is his lack of education. I'm the one who has tried to learn about what makes ds tick, and how to work w/him, but I have to coach dh about it. Why can't he study himself?
Share: Do you try to engage your dh in this or just try to do it all on your own?
Answer:
Sometimes i do feel alone as if i am the only one who knows how to take care of my ds, give him all his meds, hook him up to his pump, take him to the dr. appts., but then i have to remember that i am not alone I have a lot of family to help me out and my dh helps me out in a lot of other ways with our ds. I also have to remember that my ds is my life and my job but there are some days when i just wish for once my dh would say here let me do all of this for you for one day you take a day off.
Answer:
I hear you, Jen! I got mad at DH one time and told him he was going to feed the baby while I took a shower. I could hear him cussing and asking my 8 year old for help with the pump because he had no idea what he was doing! I ask him what would he do if something happened to me? I do feel completely alone in Tommy's care, and I don't have anyone who lives close enough to help me. We qualify for respite, but that would mean I am going to have to train a stranger in his care. That could take weeks! I don't think someone would stick around to learn everything, then want to be left alone with him. I get the feeling that if his own dad is scared to take care of him, then why would a respite worker?
Answer:
Dh is not very understanding of our dd's anxiety issues, he thinks most of the time it's all in her head. I just wish it was that simple and he would be more understanding,sometimes i think his temper leads to more anxiety in her.
Answer:
My DH has been great. We were only friends when Luke got hurt, so he wasn't there through the really bad part. After alot of convincing I hung around him more, I tried to keep Luke away from him, but they have always had this special thing with each other. If DH has a day off the same day as therapy, he takes him. He has been there for all of Luke's surgeries, and all of his specialists' appointments. He has been so great, I lean on him all the time. I am very blessed to have my wonderful family.
Answer:
DH is for the most part good about our son. He has high expectations for him, like I do, and I think we are for the most part on the same page. There was a time when he left early 1x/wk to bring DS to therapy, which I thought was nice. He has never been great with stretching DS or doing exercises with him, which is a big job. A lot of the things that he does that annoy me as a "co-parent" really have nothing to do with DS's condition, b/c he does the same stuff with DS2. From what i see around me, DH is an above-average dad, and many days when I am ready to throw in the towel with him, I bear in mind that my kids would truly suffer without him.
Answer:
remember when oprah said "you teach people how to treat you????" well, same is true with husbands i think.. you teach them they don't have to take the rains.. they don't have to learn everything b/c you will tell them what you know.. you will come up with goals for the IEP, you will reapply for medicaid.. yep.. believe me it will get old and one day you will yell and have a break down. if this is new... i would start from today and make him learn as your learning.. if that means you are fwd him websites, then that is what you do. allthe emails you get from list serves.. fwd it to him. take turns reading chapters in tony attwoods book.. you read one one day...then he reads it the next.. you discuss it and go on to the next chapter. i by no means have this under control.. but i feel you and hope this helps!
Answer:
Do any of you get any support from outside souces ie: nurses for kids with GT's, trachs vents etc - or theraputic staff support for the Autistic/ADHD issues?
Just wondering... around here parents with kids who have medical needs get approved for nursing hours so that they are able to work and sleep. The Access card pays for this as long as an MD writes an order for it. There are also agencies provide specially trained staff to work with Autistic and ADHD kids at home and school - these services are also paid for but I'm not sure if it's insurance or the county.
Having this extra help isn't for everyone but I have met and worked with many parents who couldn't do it without the help - others feel it's too much of an intrusion in their lives.
Answer:
I can completely relate to this topic with a cute story of us in Disney.
We had been going all day and just finished a 3 hour movies, Pirates. Hunter had been going for days and was just exhausted. On the way out he looked tired and I said he would be falling asleep on the bus. DH said he was just bored and he would be fine. I said "no, he is tired". DH says, don't you think I know my own son. I replied, no you don't.
DH got mad at me and sure enough Hunter fell asleep after 5 minutes on the bus and stayed asleep for the next 8 hours.
No, DH doesn't really have a clue. He talks in long complicated sentences with detailed explanations. I remind him only 5 words, KISS.