Tuesday Thoughts

At my last optometrist appointment, I was presented with some interesting options for new “shades”. One of the options offered were “transition” lenses. It’s an interesting concept. These lenses change shade increasingly to match any increase in brightness. Outdoors on the sunniest day, they are the darkest. Indoors or in the shade they are completely clear. I had a couple of questions though. “How does the lens material know how much tinting that my eyes need?” And, “Isn’t it likely that even the speed at which the lenses change will not match my needs?” In the end, I opted for a clip-on lens of the darkest material I found comfortable. I prefer to decide for myself when I need them and when I no longer need them. “Transition” turned out to be more complicated for me than the technician had originally thought.

It’s that way, too, with my son’s transition from “child” services to “adult” services. The type of services I refer to include educational, therapeutic, medical, social, and more. It’s more complicated than it might seem to an outside observer. It is entirely an individual process, unique for each and every person with special needs and their families. No one else can fully determine your needs… you really must become assertive about your needs.

The transition process is by definition a drawn out one. To avoid the frustration that comes with it, try the Boy Scout pledge... Be Prepared. Begin thinking about what your special needs will be at the age of termination of services such as pediatric medicine (age 18 -22, in most cases), public and private school educational services (the same, 18-22 years old is typical), therapies (highly variable), and social, recreational, and other routine activities. Even your insurance plans will present issues to be dealt with. There is NOTHING automatic about this thing called transition - you truly should start to plan the path of the process EARLY.

As in my choice of appropriate lenses to help with my eyes that are extremely sensitive to bright light… families and persons with special needs will need to weigh all the options, taking into account what matters most to them. It’s time to get serious about defining the difference in your NEEDS and your WANTS. When the time comes, you will have to work hard to get both of those categories of services… and you will want to have started the arrangments for the NEEDS first.

Moving to service providers who treat, manage, coach, teach, represent, and care for ADULTS with special needs WILL happen. Don’t put your head in the sand… your time is coming! Start brainstorming now about what your needs will be then. If you are like me, you will find the services that you truly need… and will discover along the way that much of what you thought you needed were simply wants.

“But my God shall supply all your need according to his riches in glory by Christ Jesus.” Philippians 4:19

Monday Musings

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

Sunday, and Rest

Rest is underrated. These past few weeks as I recovered from surgery on my toe, I found that rest is not a luxury; it is indeed a necessity which I have all too frequently ignored. I am not talking about mere sleeping (which is actually another necessity for life that I've taken way too lightly and far too often). What I am talking about is sheer REST. Rest is to relax, to take respite, to take a break or to STOP. Do we know how to do this in American culture today? I don't think some of us allow for this thing which the Lord says is necessary!

As a parent of a son with special needs, I often use the excuse that I simply do not have the time for resting. I get caught up in the long list of things "yet to be done". Everyone knows what I am talking about here. We all fall into this trap. The fact of the matter is that REST is more necessary than the items on the to-do list or the daily routine list for our child with special needs. The Bible tells us to rest on the Lord, to lean on Him, and to stop… or take a break. Moreover, it is explained to us that we must rest even during the busiest and most vital work weeks of our lives!

"Six days you shall labor, but on the seventh day you shall rest; even during the plowing season and harvest you must rest." Exodus 34:21

Sunday is the day I have chosen for resting. Prior to my recent surgery I haven't actually done much resting routinely… instead I have struggled with the things like my to-do list, and my son's unpredictable needs, and the rush of trying to get everything done on the weekend. While recuperating in my bed for two weeks, I have been impressed to WORK more at RESTING. Sounds like an oxymoron doesn't it? It is not. Resting is actually something you do, as opposed to something that happens to you as you sit doing nothing.

Resting is trusting in the Lord and the Lord's plan for your life. That takes action! Resting is laying aside the things that you DO, and choosing to separate yourself from those things (and those lists of things!) and meditating on (or thinking about) the ways of God. That takes concerted action! Resting is releasing yourself from the driven pace, and relaxing. That takes a change of action. Resting is putting aside YOUR OWN agenda for HIS. That takes self-control… and that's action!

As Sunday arrives this week, think about putting aside your to-do list… think about RESTING, in Him.

"'Sabbath' means rest, and the meaning of the word gives a hint as to the true way to observe the day. God rested after creation, and ordained the Sabbath as a rest for man."
- D.L. MOODY, Weighed and Wanting

Saturday Storytelling

Sometimes stories are the best way to express ourselves. That said, I am not always the most concise storyteller. I hope you will bear with me as I attempt to relay my thoughts in story form.

My youngest son has significant special needs. Recently I had surgery to resurface my big toe joint. Sounds complicated - really it's not so much. The thing is… I had to stay in bed with my foot elevated for TWO WEEKS following the surgery. Now THAT was interesting! My family pitched in to help, and everything went smoothly. However, I was concerned about how my youngest son was dealing with my absence from his daily care-giving routines. It seemed that he was more distant than usual from the other family members and me…. and I interpreted this as a failure on my part to "be there" for him. It made me sad.

But an interesting thing happened about 3 days after the surgery. My son, who had never really seen me just lay around in bed all day, came and stood in the doorway of my room – giving me just a few direct glances. He then took off down the hallway. I felt special because he had paid SOME attention to me, but again I began to think about how my son was dealing with things. I felt like I'd let him down. He depends on me!

Shortly after this, my son returned to my doorway and ventured inside. He danced over to the bed where I lay with the foot up on pillows, and risked a couple of brief smiles aimed at me. Then he moved to the end of the bed, where he knelt and stroked the bedspread as he continued to offer me very brief glances. Even this tiny bit of communication is highly unusual for my son, and yet this was his very best attempt to say to me… "I miss you Mom".

Just as quickly as he had stopped by, my son took off again to do the things he loves… walking briskly through the house, looking longingly outdoors, and listening to music on his favorite station. The end came as impulsively as the beginning. Someone I shared this with suggests that perhaps my son had been contemplating sharing his emotions with me when he first stopped by my room… and that possibly he'd had an inward struggle with the decision to share the emotion or not. I hadn't thought of that possibility… that of the deliberations to work through in order to arrive at a point at which he felt comfortable sharing with me in such a way.

Can you think of a time when you had to deliberate before you could allow yourself to become vulnerable with someone? I can. It happens all the time, with less dramatic consequences. All of us have a tendency to be protective of ourselves, and to not share ourselves completely with each other. In the "world" of special needs families, there is a greater tendency to react this way than in most other "worlds". Somehow we think we have more to lose by being vulnerable than do others. Not true. In reality, we have the very same potential to BE A BLESSING as do others in those other "worlds". In fact, our vulnerability with each other is one of the ways that God uses to comfort us, to inspire us, and to guide us. That's right… God uses what we view as our weaknesses (and perhaps try to conceal) to reach others who are facing the same difficult things, or similar ones.

I was deeply touched by my son's initial attempt to communicate his feelings on the day he entered my room so mysteriously. To him, it was done at great risk. Risk, unknown and indecipherable to me, but it was a risk to him just the same. Later in the week, he became even bolder and braver, and entered the room to climb into bed with me and kiss me. Then I realized anew just how very much he WAS connected to me despite the outward appearances that could be otherwise misconstrued.

How often must God feel as I did on those days… seeing us pause at the doorway of communication with Him, wishing us to fully engage in the conversation of life with Him? I wonder if His heart soars as mine did, when we venture to come to Him as we are… our special needs and all… and to tell Him we trust Him, and we need Him, and we love Him.
I wonder…

"But Jesus called the children to him and said,
"Let the little children come to me, and do not hinder them,
for the kingdom of God belongs to such as these".

Luke 18:16 NIV