How many of you are the prime care taker of your special needs kid?

[Anonymous]

My child is 16. Had a hard day with a doctor's appointment in which some tests needed to be done. She had a complete MELT down. It made me sit and think, when was the last time DH went to a doctor's appointment or handled these types of situations?

[Anonymous]

Hugs. It's so hard. Randomly last night I realized that if I died in a car crash one day, DH would have no idea what's going on in DSs life therapy wise.

[Anonymous]

On the bad days it is tough. I will admit it, I like to do all the appoinments because I know what is going on, and it gives me a little bit of control over a situation that I have no control over. I also think it is helpful in building relationships with doctors and in synthesizing information.

When it's a bad day, I too feel bitter-- and it's really not my even husband's fault. If I refused to do an appointment, he would do it, reluctantly.

Hugs. Tomorrow will be better-- or at least different!

My husband takes DD to the grandparents without me once a year for a few days. It is lifesaving for my attitude and general mental health.

[Anonymous]

I am. We had just moved to the area when we got the diagnosis so I didn't look for a new job. Between preschool, therapy and dr. Appts, I am very busy. DH tries, but DS prefers me. I go away about 3 weekends a year, 1 with DH and 2 with college friends. Keeps me sane.

[Anonymous]

I am. It's frustrating. It's gotten a little better over the years. DS is 12.

[Anonymous]

Anonymous wrote:My child is 16. Had a hard day with a doctor's appointment in which some tests needed to be done. She had a complete MELT down. It made me sit and think, when was the last time DH went to a doctor's appointment or handled these types of situations?

Then you need to tell your husband this and he needs to schedule to be available for the next
appointment. He may not realize how much you do because he doesn't do it.

[Anonymous]

OP here -

Thanks for everyone chiming in. It's comforting to know other parents have this issue and to hear of ways that they cope.

I agree it is helpful to have a parent build relationships with doctors and specialist. Someone has to keep track of all the info. to insure the doctors are all on the same page and for me, I can keep most information in my head so I can give brief synopsis vs. rummaging through a stack of papers to get info.

Everyone has their strengths and weaknesses and my DH avoids situations with our daughter when triggers may happen and it was fully predictable that getting blood drawn at the doctor's would be a trigger for her. It took two nurses and me to hold her still enough to get it done. What should have been a 30 minute appointment was 90 minutes for her and I could feel the frustration from the staff who were not used to having such problems with a child my daughter's age. I was shaken and frazzled by the end. I should plan better in the future and schedule for my DH to be there for my mental support and at least be extra hands on deck if we need it.

After my DH got home from work, I had a much needed break. I was able to have a drink and read a book in my room for some quiet time without distractions. PP's ideas of having a trip with friends or even a weekend on my own sounds like heaven and might be what I need to fully recharge my batteries.

[Anonymous]

I am the primary care giver, but we talk quite a bit so that neither of us is out of the loop. We both try to attend parent focused things, like parent group once a month (connected to DC's weekly social skills group) or both going to the Special Ed Conference last Sat. at Woodson.

I think communication is the key. Making decisions together and not unilaterally is good too.

[Anonymous]

Extra snow day yesterday.
Dentist today.
Meds doc tomorrow.
IEP meeting Monday.

Yes, will get some work done around this as well. :-/

[Anonymous]

Anonymous wrote:Extra snow day yesterday.
Dentist today.
Meds doc tomorrow.
IEP meeting Monday.

Yes, will get some work done around this as well. :-/

Hugs. It is definitely a challenge to juggle all the above.

At my daughter's last appt. with her primary care doctor, a new specialist was recommended for her. In my brain I was like WTF? How am I going to fit in regular visits with that specialist on top of all the other appointments. To boot, my DD will miss even more school than she does now because weekend and evening hours are non-existent.

I work a part-time job with flexible hours for this reason. No benefits because I am an hourly employee not salary, but it allows me to work nights and weekends to make up for all the appointments my DD needs during weekdays. The income is not great (definitely not what I would be making per hour in the real world of business) but flexible hour jobs and an understanding boss are hard to come by.

[Anonymous]

Anonymous wrote:OP here -

Thanks for everyone chiming in. It's comforting to know other parents have this issue and to hear of ways that they cope.

I agree it is helpful to have a parent build relationships with doctors and specialist. Someone has to keep track of all the info. to insure the doctors are all on the same page and for me, I can keep most information in my head so I can give brief synopsis vs. rummaging through a stack of papers to get info.

Everyone has their strengths and weaknesses and my DH avoids situations with our daughter when triggers may happen and it was fully predictable that getting blood drawn at the doctor's would be a trigger for her. It took two nurses and me to hold her still enough to get it done. What should have been a 30 minute appointment was 90 minutes for her and I could feel the frustration from the staff who were not used to having such problems with a child my daughter's age. I was shaken and frazzled by the end. I should plan better in the future and schedule for my DH to be there for my mental support and at least be extra hands on deck if we need it.

After my DH got home from work, I had a much needed break. I was able to have a drink and read a book in my room for some quiet time without distractions. PP's ideas of having a trip with friends or even a weekend on my own sounds like heaven and might be what I need to fully recharge my batteries.

DH needs to be there -- if not for your daughter, for you. It's hard enough to do with spousal support -- too draining to do alone.

[Anonymous]

Anonymous wrote:Extra snow day yesterday.
Dentist today.
Meds doc tomorrow.
IEP meeting Monday.

Yes, will get some work done around this as well. :-/

I feel you there. Last week, sick kid for 2 days. 2 snow days this week. ABA appointment today. Tomorrow school volunteer work & then IEP meeting immediately following. Monday morning psychologist appointment. Monday afternoon an ABA appointment. Still need to schedule a follow-up pediatric appointment.

This winter has been an absolute disaster.

[Anonymous]

Anonymous wrote:Hugs. It's so hard. Randomly last night I realized that if I died in a car crash one day, DH would have no idea what's going on in DSs life therapy wise.

+1

[Anonymous]

Anonymous wrote:

Anonymous wrote:Hugs. It's so hard. Randomly last night I realized that if I died in a car crash one day, DH would have no idea what's going on in DSs life therapy wise.

+1

Then tell him. Type up a sheet with the highlights. If you are married,
get your spouse involved.

[Anonymous]

Single mom. It sucks. That is all.