Maintaining normal life for family

[junkyardjean]

Today was a rough day - lots and lots of behaviors. Who knew four year old (just barely - turned 4 on Tuesday - and she is barely 28 lbs) could turn the world upside down???

 

How do others maintain normalcy? I have missed so much work, impact to finances has been severe. Some people at work have been supportive, others not so much ("why is she signing her son up for soccer, I thought her daughter was sick" - First, we are working so hard to maintain his world as well, Second - i'm not clear how the two relate). I'm beginning to think that I may have to relook at my schedule/work placement for the long term. It takes so much time to coordinate appointments, tests, etc. I had no idea there were so many loopholes, forms, fees... We have noticed things are much worse when she gets tired (either physically or emotionally), so there are some days that she can't go to daycare as we try and prevent things from getting worse.

 

It sounds like it might take a while to get back to baseline depending on dr's, treatments, etc - finding what works.

 

We are to the point that we often find alternate arrangements for our dd when there is an event with our ds (who is 7) as her behaviors can grow way out of control and we can't engage with him. It feels bad leaving her out, but if she does come, then our son doesn't get what he needs as well.

 

How do others manage? What changes have you had to make? What changes do you wish you had made?

 

Thanks in advance...

[MomWithOCDSon]

I know it's really tough, and it probably isn't all that helpful to tell you that it will get better eventually.

 

When our DS first got hit with PANDAS, it was summertime, so at least trying to manage school wasn't an issue. But it did mean that he was at "loose ends," which frankly made things harder for him. Less structure, less routine. My DH works from home and I'm the one holding down an outside-the-home, corporate sort of job. But DS was so hard to manage, that it just wasn't an option for me to leave the two of them at home together every day and head off to an office 18 miles away. It wasn't fair to DH and took too much out of him.

 

I took a leave for two weeks and tacked that on to my two weeks of vacation time when we were at the worst of it. Then I arranged with my employer to do quite a bit of work from home: telecommuting. When there was an important meeting or something, I'd go into the office, but as much as possible, I set up a home office and worked some pretty unconventional hours; so long as I met my deadlines, it was okay. That way, DH got to get out of the house himself, go to the gym, take a walk, etc., while I kept an eye on DS. And sometimes I did most of my work while DS was in bed, or when I couldn't try to deal with him anymore and so would leave him to lie curled up in a fetal position in his room and I could get a little bit of work done. It sounds horrible, I know, but you have to do what you have to do to keep it all together and retain your own sanity a bit, right?

 

We don't have other children, and I know that's a luxury most other folks don't have when it comes to dealing with a sick kid. If you don't have family or close friends locally who can help you "divide and conquer," carving out some fun time and excursions with your DS and leaving your DD in capable hands, you might need to divide and conquer among yourselves for a bit, one staying home with DD and the other having a special, undivided-attention couple of hours with DS. Not ideal, I know, but this PANDAS business rarely is. You say you're in a rural area, so I wonder what the chances are you might be able to find a local "support" group of some sort? A church group? A parenting group at a local medical center? Something like that? I think this forum is awesome, but sometimes you want an actual, physical human being along with the World's Greatest Cyber-Support Community!

 

As for what your coworkers are saying to your face or behind your back . . . shame on them, and ignore 'em! I'm sure it's very hard for "outsiders" to understand, but a little compassion would go a long way! Heaven forbid one of them should wind up in a similar situation! Probably not the best move, but if one of them were to comment on my signing my son up for soccer even though my daughter was ill, I think I'd be tempted to retort, "You're right! Why didn't I think of that! I should probably just tell him to grow up and get used to going nowhere and doing nothing and having no friends because his sister is sick and he doesn't count at all when measured against that!" Geez!

 

Hang in there!

[fightingmom]

I don't think I can possibly top Nancy's advice, but just wanted you to know that you are not alone. It's SO hard and some moments you just want to give up...but then you pick back up again and keep on keepin' on. It's all we can do. Hang in there.

[mom24]

I am blessed (sometimes it doesn't feel this way) that I can stay home with my 4 kids. @ of my DS have PANDAS and LYME (One severe w/ bartonella). He is our 4 YO and I can relate to what you are saying. We are unable to go out unless we have one on one coverage for him. I leave him at home with our fantastic sitter. It is hard because I want him to learn how to behave, but when he is sick it is hopeless. It is very difficult when the whole family goes out since my husband lacks patience with the 4yo. He can often be aggressive and irrational---due to the OCD and PANDAS. It is extremely stressful and I keep hoping that we are tracking on the right path. We are fighting for IVIG for him now---which will mean 2 in IVIG if we are lucky. Stay strong and know that you are not alone (I tell myself this while people stare at us when he make a commotion while we are out at times). People that don't understand are ignorant and better hope that nothing like this comes there way, It is definitely a sign of immaturity. The sports thing is hard and we still deal with it often here (with my 9 yo and my 4 yo boys) . I have found a special soccer program for my 4 YO where he will have a one on one AND it is FREE!! I can't wait for him to start and to meet some of the other parents in this program. Hang in there!!

[hugs2day]

For some reason my first post didn't save, but I just wanted to share my support for what your going through. My husband and I work full time and had to start working opposite shifts because of the kids illness. I have intermittent FMLA approved at my work for emergencies. It protects my job and my sanity as I never know when a loose tooth or strep is ready to wreak havoc.

 

I know this advice may seem trite in the early days I had a tough time feeling like anyone got how hard my life had become, but it really does help to take it day by day and enjoy the moment. I stopped planning too far in advance, I also leave my youngest at home when my older son has an assembly, or cub scout event, etc. I had a dream of a perfect family and my expectation is that we would do everything together, but we had to make a new normal for ourselves, new routines, and just simplify life to deal with this chronic illness. Don't get me wrong we still have a lot of fun, but I try to keep realistic expectations so as not to be dissappointed. Through it all we have somehow found a sense of humor too, my dh and I have taken 401k loans, our paydays always has a huge supplement bill, we pay cash for consults and we just joke through it all saying "its just another red letter day". It will get easier, I promise you. Give it time and make the necessary adjustments and let yourself off the hook she won't remember she missed an outing she will have plenty of her own in the future in which she is the center of attention.

 

Your life will get easier, I can assure you of that. In my darkest hour I used to go to work with tear stained face and was a walking zombie, honestly that is a faint memory know and I am still dealing with PANDAS with my youngest fairly often. PM me if you need advice on getting FMLA.

[1tiredmama]

You are a great mom! You are absolutely on the right track in wanting to keep your healthy child's life as "normal" as possible. My children are now 17, 14, and 11. The oldest and youngest have severe bipolar disorder (under control now--whew!)

 

Looking back, I'm glad that I always kept the lines of communication open. My kids feel free to express their anger, frustration, embarrassment... over a sibling's behaviors. They know that they have a right to those feelings and that they will not be judged. I usually mirror their feelings.

 

I'm also glad that DH and I carved out individual time for each child. One year, I took the healthy child on a weekend mini-vacation to a theme park. We both really needed that time away. He felt taken care of. We have great memories of our trip together. Neither of the other children has ever resented being left behind. They know that they could not have enjoyed such a trip.

 

Choosing to laugh all through this journey was a good decision. It's better than reacting with negative emotions, and it's better than crying. One time, after a particularly harrowing evening trying to control dd (7 at the time,) during the wait for and the appt with her psychiatrist, she refused to step off the hospital elevator on the way out. Well, the doors closed and up the elevator went. I almost panicked. As the car went up, healthy ds and I could hear dd yelling, "Waaiitt, Mooommm!" Her screaming (which we were so accustomed to) grew fainter and fainter as she went up. Ds and I turned to each other and burst out laughing. What goes up, must come down, right? And, she did! I didn't have to say anything to her, she never fussed and lingered on an elevator again. Ds and I still crack up over that one.

 

Lastly, I'm glad that I didn't care what other people thought of me or my parenting style. I refused to hide my children away at home just because other people might stare. "Let 'em stare!" I'd tell myself.

 

Today, healthy ds is a straight "A's" honor student. He is popular, confident, and happy. Oh, and he is one of the best players on his soccer team!

 

DD still has severe anxiety, but her life is coming together. She dances and plays soccer. There were times when I thought I had completely lost her. But, she's back. It does get better.

 

My oldest (probably has PANS) still does not function well with Tourette's and Aspergar's symptoms, and he chooses to stay back from family outings now. Staying home wouldn't make me happy, but it makes HIM happy. With his therapist's help, I have learned to accept that. His normal is different from mine, but he is happy.

 

Hang in there! It will get better, but it may take time. Your ds is lucky to have a mom who cares enough to see beyond her sick child.

Edited April 15, 2012 by 1tiredmama

[LNN]

Others have given some great advice. So not sure I'll add anything different. I was fortunate to be working part time with flexible days when this hit. But I think figuring out some way to gain job flexibility is going to be important. This probably isn't something that's going away in a few weeks. So figuring out the job thing early is important.

 

I think it's awesome that you recognize your son's needs. It's so tempting to ask the healthy one to "suck it up" and compromise while you deal with the crisis child. Don't worry about "leaving your DD out". Your son's needs are equally important. So I think you're doing the right thing there.

 

As someone else said, letting go of preconceived notions of how things "are supposed to be" is really helpful to. Forget about what others think.

 

Two other key things - take care of your marriage and take care of yourself. This will test your marriage in ways you never imagined. It will test your finances, your time together, your ability to communicate and to support each other when you're exhausted from supporting your children. Our family therapist kept pushing for "date night" but I was never comfortable with that. We couldn't afford a night out when we had medical bills and my reduced work hours were already hurting our finances. I didn't trust a babysitter to be able to handle behaviors. So we eventually carved out "us" time in the mornings - shower/shaving/bathroom time became our time together to compare notes, talk, be honest with each other. Sounds lame, but at night, we were just too tired. So carve out whatever time of day works, but schedule in some time every day to check in with your spouse. We sometimes had "lunch dates" when the kids were in school and daycare so we'd have an hour alone.

 

Hardest of all will be taking care of yourself. Generally, both parents don't play the same role in this journey. One will be "alpha dog" - usually the parent who joins the forum. Alpha dogs become the conductors. But they usually forget to take care of themselves and feel guilty when they do. But the rest of the pack needs a healthy alpha. So indulge in small ways. Take long showers. Play your favorite music when you're alone in the car. Insist on carving out 30 min a day where you exercise or read or talk to your mom or drink a cup of coffee alone on your deck or whatever you need to do to nurture yourself. Just small gestures to remind yourself that you matter too.

 

You won't believe any of us that it gets better. Sometimes it takes a long time to get better. But it does - because you learn more, you learn coping tools, you connect with doctors and parents who can support you.