Sunday, January 18, 2009

Any suggestions

I am looking for some help. It has nothing to do with medical help, just emotional help is the best way to desribe it. As I have already said, our oldest son has autism. So having things different for us is nothing new. For those of you who have kids on the spectrum, I know you understand the need for set routines, ect. And you life basically revolves around it. Our son's bedtime is 8:30pm. In order to get him to bed and to sleep on time, we need to start the nightly routine at 6:45-7ish every night. If we are out at family functions (since that is basically all we do as a family), we know it will take 2 hours at night for him to calm down and do his thing in order to go to bed. It's not hard on weekday nights to be home and into the swing of things at 6:45. The one thing that has come up is that our church just moved to 9am. We used to have 1pm so if Trevor got to bed late, it was fine. Now it is no longer OK. So we have to be home by 7 at the latest now to get him to bed on time. Saturday nights used to be the one night a week we had to stay out later, have big family dinner's, ect. My extended family loves to do game nights and did one again last night. Since it didn't even start until 6:30, we couldn't make it. Now this isn't a new thing, we have missed so many I can't even begin to count, family get-togethers since it didn't work into our schedule. But for some reason I am really having a hard time with it.

So I am wondering if you have had this problem as well, and if you have any suggestions on how to not get upset? It seems like we miss so many things these days with having two kids that are special needs. It's not my family's fault, not our fault, but it still happens. I think it is hard to not feel left out of the 'regular' things that go on. There is no easy solution, and I know it has to come with my attitude. So if any of you have had simliar situations, what have you done to get through it?

PS. Katie, I am interested in the Melatonin. Can you bring it to playgroup on tuesday?


Katie said...

Sure I'll bring you the Melatonin! That is certainly a dilemma you have. The only way I make it through my week is that on Saturday I go to my mother's and we play games and make pizza and just bond. So I am not sure I have a solution for you, just the thought that if it is as relaxing to you as it is to me, you shouldn't give up your family time.

Lori said...

would your family be willing to let him sleep there? that's the only way we get to do things with friends/family when it's past 7:30... we do the nighttime routine at their houses and let them sleep, then we stay up late and play. :)

or let me know and I'll come watch your kids so you can have your family/get out time. it IS important!

Anita Nap said...

We don't really go anywhere either. If we are out late, it really messes with Marshall's schedule and he doesn't sleep as well. We do go to our family dinner but we try to leave by 7pm. Ours starts at 5:30pm. Can you ask your family if you can start it earlier so you can be home in time for bed? We give Marshall his Melatonin and Clonidine when we leave my uncle's house because it's an hour drive home. I also take his jammies so he's all ready for bed. I really don't like going places because Marshall really won't eat when we're gone and it's not worth the fight sometimes. I hope you can figure something out so you can go to your family game night. Would you want to have it at your house?

Anita Nap said...

Since you mentioned Melatonin it made me wonder. Does Trevor have trouble falling asleep? What about staying asleep? I LOVE LOVE LOVE Melatonin because without it, Marshall could NEVER fall asleep. He seriously could keep himself going all night. He has to take Clonidine as well. Both of those have helped tremendously. He still wakes up quite a few times at night but it's not nearly as bad. I have a wonderful sleep doctor I can recommend. She's in Murray so I don't know if that's close to you or not. I'm in Orem so it's kind of a drive for me but it's worth it.

Melissa said...

Anita nap, that sounds exactly like our life! Sometimes it's just not worth the stress and frustration a disrupted schedule for Trevor does to our whole family. We have stayed out in the's just that now our church is so early, we have to be home at a reasonable time for Trevor. We used to just stay out later, but he could sleep in. My husband works late on friday nights (until 8:00) so we can't do things that night. It has just become a little more difficult lately. The other problem is we live about 25 min away from my entire family. They all live like 5 min away from each other, and we are the only ones living farther away. So it's not as easy for us to drop everything and go somewhere.

I am interested in what doctor you go to for Sleeping issues with Marshall. I have sleeping problems with Trevor and even more so with Josh right now. It is exhausting as you know.

Thanks everyone!!

Ima Mom said...

As I am reading this I can relate...A LOT! Our family does not understand the special needs our children have so lately we just avoid one side of the family all together, not the best solution. I take time to do things that help me, like go work out or go to the temple. Do we have a social life? NO NOT REALLY! We had an "adult" activity Friday night and we ended up taking our youngest child with us. I am hoping as our children get older it will get better. We use melatonin frequently and we also have all four children sleeping in our room because they have anxiety and night terrors....there is no "alone time" and I think it wears on a marriage. I find peace in knowing that God knows. everything we offer in this life as a sacrifice will some day be returned. that is my faith that I hold on to.

Anita Nap said...

I emailed you my doctor's name and number.