I Want The Truth

I got the call from the school nurse at 2:15pm Friday. They told me Jessica was on her way to the hospital in an ambulance. And here's the reason they gave me:

Jessica was late getting to school on Friday. Once there she was very, very, very sleepy - so sleepy that she fell asleep in the restroom, and started choking at lunch because she fell asleep while eating. The teacher had a rough time rousing her. During one of her awake periods, Jessica said she had gone to the dentist that morning and the dentist gave her medicine.

Thing is - Jessica did not have a dentist appointment, and to top it off, Jessica doesn't make up stories. Never has. Never tells a lie. Her brain is just not wired that way. Her teachers in elementary and middle school found it impossible for her to concoct a story for reading class even when she was given the start of the story. She has never engaged in imaginative play. She does, however, repeat verbatim things that people tell her.

I was told that Jessica's group home manager was following the ambulance to the hospital, and I told the school I was headed there also. Since I was at work downtown, it would take me about 20 minutes to get to the hospital. When I arrived, there was no group home staff anywhere to be found, and no one had been there.

Jessica was indeed sleepy. She barely opened her eyes to tell me hi and then she nodded off again. Usually a person that requires four strong men to hold her down for a blood draw, she didn't even whimper when the nurse stuck her. This definitely was not Jessica....

I continued to try tracking down the group home manager. We needed answers to questions about how Jessica's previous night had gone, what had happened before school, and if anyone else at the group home was sick. But I couldn't get her. Finally a strange man popped into the room and said he was a group home staff member. But, he had no answers to our questions.

The ER doc had a cat scan done. I was worried that Jessica's shunt may be failing, although her symptoms really didn't support that. The cat scan agreed - it was not a shunt issue. Fortunately, the ER doc astutely ordered a tox screen - a test to check just what Jessica may have been given or ingested.

Apparently, she was either given too much of her meds, or she was given meds that belonged to another group home resident. But the group home staff refused to accept that. They said she was fine and they had no idea what the doctor was talking about.

Jessica was finally discharged, and I have left a message for the director of the company to contact me. Although I am sure there is no written record of the extra meds, just the fact that someone told Jessica to say she went to the dentist convinces me that the person knew something wrong had occurred.

I'm not sure where all this is going to go, but I will keep you posted...

What Do You Do?

I've got two questions for you today. Neither of these issues are huge, just things that occupy my mind from time to time - like this past weekend!

First, how do you teach your children with special needs manners? I find myself having to prompt for a 'please' and 'thank you' from some of my children all the time. Ashley has gotten both of those things down, but not my other children.



I want their please and thank you to be spontaneous. I don't want to have to prompt.

And, how about other things? How do you teach your child with significant special needs to chew with their mouth closed, for instance - or teach your son that it is polite to hold the door for a woman, if indeed he can hold the door - or to say 'excuse me' after a burp.

Again, as with the please and thank you, I don't want to always have to prompt for good manners.

So, if anyone has some tips or things that have worked in your family, please share!

Secondly, if you have a child or children who use(s) lots of adaptive equipment - wheelchairs, walkers, braces, canes, standers, etc. - how do you keep your home from looking like an equipment showroom? Does it bother you to have all the equipment taking up lots of space in your home?

This doesn't bother me greatly - I'm not going to lose sleep over it because it means my children have the equipment they need. But just every so often, I would like my home to look a little less crowded with aluminum and plastic. I hope that doesn't make me a bad mother, maybe just an obsessive/compulsive cleaner! Or maybe, I just need to stop watching HGTV so much.

Any ideas on either of these two subjects would be greatly appreciated!

Holistically Speaking

This weekend my family and I attended the kickoff picnic for another year of Va LEND mentorship. Va LEND is a program of study at our local university in which professionals team with families that have children with special needs. It is a year long program that affords the trainees the opportunity to see really in-depth what life is like on a daily basis when one is raising a child with special needs.

We’ve been participating as a mentor family for 10 years, and have had a pediatrician, an occupational therapist, several teachers, and a physical therapist, just to name a few, as our trainees. I think it is really a wonderful opportunity for the trainees to see the bigger picture and for the families to understand the stresses and viewpoints of the professionals. But all this got me to thinking….

When Ronnie recently went through his bladder surgery, the doctors told me a lot about the surgery itself, but they didn’t tell me what life was going to be like for the six weeks following surgery when Ronnie was recuperating at home. The doctors didn’t intentionally leave out that information – they just didn’t know it. Their perspective is clinical. My perspective included sleeping, eating, bathing, bandaging, going to appointments, and dealing with catheters that failed hourly.

I believe that if I had a glimpse into what life was going to be like post-surgery, my stress level and Ronnie’s would have been lower. I could have made arrangements for the things I would need before the surgery, not after. I could have worked out a nursing schedule that made everyone more comfortable. I could have stocked up on easy-to-prepare meals, and done as many errands as possible.

Even while Ronnie was in the hospital, I wished someone had told me what to expect – not the surgery details – the doctors did a great job of that. But things like packing pajamas for Ronnie was a waste of time because he wouldn’t be able to put them on due to all the catheters. Or, preparing myself and Ronnie for the fact that he wouldn’t be able to eat for a long while after the surgery. Or, making sure I had an easy way to get him home when he was discharged. Even knowing that I could get a week long parking pass from the hospital at a reduced rate.

So, I think the doctors need a mentor family for their patients that will be going through similar surgery.

If another family was facing bladder augmentation surgery, the doctor could refer that family to me. I could help them understand the daily challenges, the emotional toll, and the needs to expect once they returned home. I could even be at the hospital holding their hand if they liked.

Doctors are often not as warm, not as comforting as another parent can be. The doctors do their jobs very well, but don’t have the time or perspective to go that next step of providing the day-to-day support a family needs.

It’s time, in my opinion, to treat the family, not just the patient. What do you think?

Reclaiming Our Space

Since Ronnie came home from the hospital, we have had CNAs (Certified Nursing Assistants) helping with his care. When he first came home, that care was all consuming – bathing, toileting, dressing, wound care, etc – and it was so nice to have an extra pair of hands to help me with that. I am very thankful that Ronnie’s social worker and her agency realized that I needed the help and were very quick to provide it. But now I’m glad those services are drawing to a close.

Ronnie can take care of almost all his needs now. His surgery wounds are healed. He doesn’t need help with lifting or transferring. He can take a shower all by himself. He dresses himself. In short, he is back to pre-surgery form. So, the CNAs are no longer needed, and for that I am glad.

I’m sure like for many people in the world of personal assistance, the pay isn’t good for the CNA. That means that usually the ‘cream of the crop’ folks are not drawn to that career choice. We had two CNAs that seemed interested in doing a good job, but we had several more who were not good at all. Even the ones that were passably good were often late, needed to leave early, or had some other drama in their lives that ended up having an impact on Ronnie and our family.

And I was just really uncomfortable with a string of strangers in my house.

I don’t know how the families do it that need full-time nursing care for their children. Even around the clock care. How do they adjust to having people around while they sleep and otherwise go about their daily routine? And that daily routine is exactly what was disrupted for me.

I need my routine. My children need their routine. And no matter how good the CNA or nurse might be, routines have to change to accommodate them.

We only have one more day – today – with a CNA, and I am so looking forward to having my life back.

Does any of this make sense?