Our son with special needs requires quite a bit of monitoring. Lately, I have been thinking about the progression of our monitoring attempts. The reasons for monitoring have also changed quite a bit over the years… and so have the tools we have used in monitoring his safety and his needs.
Our son began to have seizures around 7 months old – he developed epilepsy. His frequent severe seizures at that time required us to always be physically present with him. We carried him with us wherever we had to be, whatever room and whatever project we were working on. He slept in a tiny crib in the corner of our bedroom. I didn’t get sound sleep very often at all.
Soon our son’s seizure frequency and duration escalated, and we found that we had become so tired and sleep-deprived that we could barely stay awake or hear him when he had seizure activity. So we had to move him INTO our bed at night so that any activity would awaken us and we could take steps to be sure his airways were open. This didn’t last very long until MY doctor prescribed a night-shift nurse to be at our house overnight so that we two parents could function more normally. We have two other sons just older than our son with special needs, and they needed care… and their daddy needed to get to work and KEEP the insurance. Our monitoring methods changed from physically being present, to delegating someone else to be there physically for part of the time.
After the age of 2 years, our son’s prescription therapies changed, and so did his future. He’d suffered not only from the seizures and their effects, but from a toxic level of the very medications given to enhance his “quality of life”. Our monitoring took another direction, and we began to accumulate tools for helping monitoring our son and his safety and healthcare needs.
Our first tool was that of lab tests to determine levels of the drugs present in his body. (You modern moms will be cringing at this point.. but please note that my son is older, 24 years old now. And in those days, there was not yet the availability of a drug level test to help with the monitoring. Those tests became available for his medications when he was nearly 2 years old. )
Soon our toolkit was enlarged again when I chose to purchase a 2-piece, commercial intercom system, and used it to monitor the sounds from his nursery (at age 3) while I cooked or did laundry in another room. We were still not comfortable with relying on the intercom during the night… and had let our overnight nurse go due to an improvement in our son’s seizure pattern… so he again slept in that tiny crib in our bedroom at night. The intercom was the beginning of a new phase in monitoring. Eventually, I trusted the intercom enough to go outdoors again with the older two boys, with the intercom unit plugged in on the patio, or front porch of our house. We gained freedom with that and each subsequent tool we added to our monitoring toolkit.
Over time our son’s needs for monitoring have changed pretty dramatically. Our son still has the need to have monitoring for his seizure activity, and his safety. Over the years we have progressed from that small-office intercom system to the cutesy “baby monitoring systems” with the marvelous options of wireless operation (what freedom!), to a video monitoring system that also operated wirelessly and could be viewed on a TV or even recorded on a VCR tape (modern moms, please realize that when in use, this was CUTTING EDGE technology! )… to the current day model of using a “simple” webcam and software on two laptops… one that is outdated, but can connect wirelessly to the internet, and the other one that is newer and is Mom’s link to the outside world. We couldn’t imagine still being unable to be in a different room from our son… and I’m sure he wouldn’t want to go back to that old method of monitoring either. He enjoys his new-found privacy to listen to his music!
Our son has medication charts to monitor the medications given and the side effects are monitored as well. Those charts began as paper charts, and now are strictly stored on the computer in files that can be printed for the doctor visits, or shared via email or USB drives. Currently, there are even secure websites set up to store the information monitored!
During the school years, the need for monitoring was not less but more. There were meetings, and phone calls... letters and checklists... evaluations and therapies... home visits and team meetings...and all kinds of testing, All of this was necessary to monitor the need and developmental and educational progress of our son. Not monitoring those things was never an option. He depends upon us!
I find that now, my physical presence is still important in monitoring the kinds of services our adult son gets, and that will not likely change much in the future. It seems that with some things, there is just no substitute for a caring person, observing and researching the reality and the possibilities for improving the life of a person with special needs. As a parent, I truly am my child’s best resource. Other parents of children with special needs will understand this to be true. We need to encourage each other to take whatever steps can be taken to make this portion of special-needs parenting easier… that of monitoring the needs of our children. Networking with other parents may be the very best way to increase our resourcefulness, in caring for our children and their special needs.
Although after reading this it seems more than one person can do... please realize that this was a survey of the progress of the process of monitoring my son with special needs... over 24 YEARS. Also I'd like to offer a caveat that one of my dear friends taught me to use... "Your mileage may vary." : )
“And my God will meet all your needs according to his glorious riches in Christ Jesus.” Philippians 4:19
Our son began to have seizures around 7 months old – he developed epilepsy. His frequent severe seizures at that time required us to always be physically present with him. We carried him with us wherever we had to be, whatever room and whatever project we were working on. He slept in a tiny crib in the corner of our bedroom. I didn’t get sound sleep very often at all.
Soon our son’s seizure frequency and duration escalated, and we found that we had become so tired and sleep-deprived that we could barely stay awake or hear him when he had seizure activity. So we had to move him INTO our bed at night so that any activity would awaken us and we could take steps to be sure his airways were open. This didn’t last very long until MY doctor prescribed a night-shift nurse to be at our house overnight so that we two parents could function more normally. We have two other sons just older than our son with special needs, and they needed care… and their daddy needed to get to work and KEEP the insurance. Our monitoring methods changed from physically being present, to delegating someone else to be there physically for part of the time.
After the age of 2 years, our son’s prescription therapies changed, and so did his future. He’d suffered not only from the seizures and their effects, but from a toxic level of the very medications given to enhance his “quality of life”. Our monitoring took another direction, and we began to accumulate tools for helping monitoring our son and his safety and healthcare needs.
Our first tool was that of lab tests to determine levels of the drugs present in his body. (You modern moms will be cringing at this point.. but please note that my son is older, 24 years old now. And in those days, there was not yet the availability of a drug level test to help with the monitoring. Those tests became available for his medications when he was nearly 2 years old. )
Soon our toolkit was enlarged again when I chose to purchase a 2-piece, commercial intercom system, and used it to monitor the sounds from his nursery (at age 3) while I cooked or did laundry in another room. We were still not comfortable with relying on the intercom during the night… and had let our overnight nurse go due to an improvement in our son’s seizure pattern… so he again slept in that tiny crib in our bedroom at night. The intercom was the beginning of a new phase in monitoring. Eventually, I trusted the intercom enough to go outdoors again with the older two boys, with the intercom unit plugged in on the patio, or front porch of our house. We gained freedom with that and each subsequent tool we added to our monitoring toolkit.
Over time our son’s needs for monitoring have changed pretty dramatically. Our son still has the need to have monitoring for his seizure activity, and his safety. Over the years we have progressed from that small-office intercom system to the cutesy “baby monitoring systems” with the marvelous options of wireless operation (what freedom!), to a video monitoring system that also operated wirelessly and could be viewed on a TV or even recorded on a VCR tape (modern moms, please realize that when in use, this was CUTTING EDGE technology! )… to the current day model of using a “simple” webcam and software on two laptops… one that is outdated, but can connect wirelessly to the internet, and the other one that is newer and is Mom’s link to the outside world. We couldn’t imagine still being unable to be in a different room from our son… and I’m sure he wouldn’t want to go back to that old method of monitoring either. He enjoys his new-found privacy to listen to his music!
Our son has medication charts to monitor the medications given and the side effects are monitored as well. Those charts began as paper charts, and now are strictly stored on the computer in files that can be printed for the doctor visits, or shared via email or USB drives. Currently, there are even secure websites set up to store the information monitored!
During the school years, the need for monitoring was not less but more. There were meetings, and phone calls... letters and checklists... evaluations and therapies... home visits and team meetings...and all kinds of testing, All of this was necessary to monitor the need and developmental and educational progress of our son. Not monitoring those things was never an option. He depends upon us!
I find that now, my physical presence is still important in monitoring the kinds of services our adult son gets, and that will not likely change much in the future. It seems that with some things, there is just no substitute for a caring person, observing and researching the reality and the possibilities for improving the life of a person with special needs. As a parent, I truly am my child’s best resource. Other parents of children with special needs will understand this to be true. We need to encourage each other to take whatever steps can be taken to make this portion of special-needs parenting easier… that of monitoring the needs of our children. Networking with other parents may be the very best way to increase our resourcefulness, in caring for our children and their special needs.
Although after reading this it seems more than one person can do... please realize that this was a survey of the progress of the process of monitoring my son with special needs... over 24 YEARS. Also I'd like to offer a caveat that one of my dear friends taught me to use... "Your mileage may vary." : )
“And my God will meet all your needs according to his glorious riches in Christ Jesus.” Philippians 4:19
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