How do you deal/cope??

[DeAnthonysMom]

Now I see there are so many kids out there who have similarities in medical situations and many that are new to me. I asked yesterday about what your schedule with your kids looks like and what you have to deal with. Im curious about that but what I also wonder is how do you( as a parent) deal with the emotional mental and physical side of it. Not for your kids ----you. And does anyone else go through a hard time with the doctors and other people who are supposed to be helping you? I always feel like they're testing my intelligence.. If so how do you deal wth that??
I've been doing this now for ten months as a single parent and I feel drained in all areas. It was hard to all of a sudden be thrown too into the medical field with all These terms and procedures. We see cardiology, endocrinology, ophthalmology, neurology, GI and his regular Ped. We have OT and PT weekly and visual therapy biweekly.
This is not my only hardship. I've got an unusual situation I feel. I'm Native American. I live with my grandparents on the reservation. I thought this would be a good idea for two reasons-- I could use the support and it's important to me that Baby learns our traditions and language( English is my second) so he always knows where we come from. There are also 2 other adults 1 teen and other child living here. Well its been far from good for other reasons. My family has NO idea what it's like to go through what i do because they dont have To deal with it. Noone tries to understand. Looking at baby you'd never be able to tell anything wasn't right( unless you have a trained eye) so they don't think it's a big deal. they don t realize how hard I've worked to get him this far and keep him alive.
I'm also expected to do a lot as far as keeping the house clean and cooking for this family of 8.I do it everyday. I get no break because Rez life is always so busy. Noone between tries to offer help either. I have to wait til someone's in a good mood To see if they'll watch him long enough for me to shower. Did I mention he doesn't always like to be out down?? The first months were the longest. When I couldn't put him down to make a bottle or change him with out him crying til he changed color. So obviously I haven't had ANY other kind of break because no one else wants to try to deal with it. We qualified for respite . as of this month I'm now looking for a caregiver that's gonnaa work for us. I'm getting better in all areas of this but I still can't catch a break.

So how do u deal? What's your situation? Do you have anything u wanna bitchout? What do you do to make it work and be easier for you??

[babyblue21]

I take it 1 day at a time. Sometimes even 1 hr at a time. I have 2 with ASD and SPD. Both completely opposite. One receives intense ABA therapy 6 days 6 hrs a wk. The other is in OT 2hrs twice a week. One also is immunocompromised.
I'm a fulltime RN working in a level 1 NICU. Work is easier then home life!
Seeing specialists can be so annoying if we see a sub. They will talk to me slowly.
I'm constantly reminded it could be worse with my job, I give myself a lot of prep/encouragement talks.

[sammygrl77]

Honestly, I have no idea how I got through the first few years. Just putting one foot in front of the other. Life was so busy, there wasn't much time to cope with anything. We had no help, still don't. The respite care will help you a lot. I used to go to counseling and currently take medication. I suffered care giver burn out... I'm not really sure what to call it. I had to slow down and try to get me time after that.

[singlemotherof8]

I agree with sammygrl77, one day at a time. I am a single mother and i had to deal with raising all 8 of my kids by myself. My 2 youngest have or had learning disabilities, but my now 21 year old is still living at home. She has the most leaning disabilities. Then i adopted my granddaughter who will be 8 next month, but i have had her sense birth. She has ADHD, PDD,NOS and sees a sppech therapist. The only time i get is when they are both gone during the day. I can't go out at night because i can't leave the almost 8 year old alone with my daughter. My other children have their own lives so i get no help from them or anybody. One day at a time is all you can do. Good luck.

[gma12.1]

Is he seeing pediatric specialists? I am asking because sometimes doctors will send children to a regular/adult specialist if there are no pediatric specialists nearby.

I can understand what you are going thru, but I've not had to deal with it as deeply as you are. My granddaughter began living with me at 8mo old, she had problems but family thought she would be fine as she grew. She didn't get any better and she was almost 3 before I could even get her family doctor to refer her for testing. She got into the programs that she needed and is now 8, she some more problems health wise that have cropped up in the last 2-3 years. She has brother & sister that are 14 years old they try to treat her like she is a typical 8 year old, I have to keep reminding them, and the rest of family that she has the abilities of a 4-1/2 year old, and in some areas she is only 18 months old. It seems like everyone expects me to do about 90% of the things that need to be done on a daily basis. If I try to do something by myself someone has something that I am the only one that can do it. My ME time is when I get groceries, or run errands by myself while the kids are all in school. Even my husband trys to treat her like she is 8 alot of the time. 

I think that a lot of people don't like to admit that there is a problem because it embarrass' them. Other's don't like to admit that there is a problem because then it means that someone in the family has passed this on, that means that they have problems in the family tree.

[mandee1503]

We just take it one day at a time. I'm grateful for my family who will help when they can. But we go so much that some days it's hard. I just want to curl up in bed and cry and sleep for a few days.

[foreverof4]

 One day one hour and one minute at a time hugs

[darbyakeep45]

Yep, I take things one day at a time.  The first year was the hardest for me and things got a little easier after that...I just have to focus on the present and not worry about the future.  Hugs mama!

[CameronsMommy23]

One day at a time definitely! Take breaks when you can. After the kiddo goes to sleep take a hot bath, read a book, come here to chat, etc. *hugs*

[Autiziumom]

I have a 8 yr old autistic boy! The way we deal is now asking for help! I finally decided to open my big mouth! I had a anxiety attack earlier this month! So I don't wait anymore if they want to or not! U cannot wear urself out! Trust me u won't last!

[letstalk747]

 sometimes better than others , one hour at a time lately , im dealing by overeating