Monday, June 13, 2016

A View from Suffering

 Follower of Jesus,
Be not anguished!
Think not that your suffering is
a chest padlocked and tossed into the depths
unknown to existence.

 Sorrow, suffering, broken-heartedness
is filleted layer by layer,
laid open wide before the sovereignty of God
placed under the microscope of 
the blood of Jesus.

 Sorrow, suffering, broken-heartedness
in Christ is cleaned,
although stinging, with righteousness
to heal and mend 
with the salve of pure love and grace. 

 Follower of Jesus,
He is always working.
The wounds of sin are 
no stranger to Him who bore 
those of the whole world and 
suffering is not lost without purpose.

 From this view, you can see eternity
and this is why joy can reside closely
with Sorrow, suffering, and broken-heartedness


 If you are not a follower of Jesus, know that you will know Him one way or the other, either in His grace and mercy or only under His judgment. He is not hiding His Truth from any. He is Lord of All. Just read Ephesians and ask God to show you His glory that you may see eternity and have the greatest of joy. 

Tuesday, June 7, 2016

Secrets of a Secret Language

 The movement was just a small shifting but she stopped eating and turned to adjust him in his chair, asking, "Is that better?" He shook his head. 

 At the time I did not fully comprehend the exchange before me but it registered deep in my mind as something inexplicably precious. My nephew cannot talk. He can do a modified sign language and use different devices to communicate but none of that is always needed. What I am learning caring for a non-verbal child is that there is a secret that others do not know unless they care for someone non-verbal. 


 We have a limited idea of it when we get married and live with our husband long enough to understand that wrinkled brow look or when we have a baby and those first months have no words. Somehow though we miss out on learning it more intricately. That shift in the chair and my sister's response was a full conversation in front of me without my knowledge. The movement clearly said, "I am not comfortable" to my sister. She understood it and responded. 



  As I care for Jellybean, I am learning this secret language. It happened the other day when we ventured out to the Botanic Garden. My husband was holding Jellybean and walking towards a fountain spraying water. Jellybean visibly stiffened and started grasping with his hands. He was excited. As we ventured on, we came to a noisy play area and my husband carried him up the treehouse ramp and across a suspension bridge. This time his body stiffened and tremored a little and he grasped my husband's shirt. He was about to meltdown and my husband must have felt it because he turned around to come back. Before he could make it across, a screaming child ran past shaking the bridge and Jellybean went into freak out mode. He can recover pretty quickly if you can get him some place quieter and give him his blanket. 

 We decided to go to a more peaceful part of the garden and enjoyed our time looking at fish, listening to birds, picking up sticks and leaves, and just being outside. What I realized even more that day was that caring for a special needs child is special. 


 It is easy to get caught up in the "Why" or grief and heart ache of it but once you are in it, there is no reason to dwell in either place. My mind has decided that it is a lot like tent camping in the middle of Belize. You can say that you have seen Belize if you went on a cruise and docked there for a day. You can say you have been to Belize if you stayed in a hotel there for a week. Sure you have some exposure and memories, but you do not completely know Belize and its intricacies. 


 Want to really know Belize? Pitch a tent in the middle of the Belizean jungle for a few years and trek miles on adventures exploring. You get to know the perils and treasures firsthand. Do not think that I am romanticizing the situation. There is beauty of course but also the ugliness is revealed to you in personal ways. Not much is secret when you are living in the middle of it. 


 When they were babies and toddlers, I knew my children pretty well but they grew and could do things without me. They had secrets and times where I was not needed. They could make choices of their own accord. 


 Jellybean cannot say that he is hurt or scared. He cannot hide or even play with something else if he cannot reach it. He will smile and giggle if we ask him questions about what he wants and we get to the right thing but we have to know what question to ask and what choices to give. It is a much more intimate communication. It is messy and sometimes ugly but it is also beautiful and full of treasures. 


 We are working with picture cards and sign language but it is a slow, patient work. It is crucial to learn him and know him better than I know anyone. The secret language is not just a sweet part of our relationship, it is vital but the necessity of it builds something incredible. 


 It is an amazing reminder of our relationship with Christ. We have the Word but Christ is not going to physically speak to us. We must pitch our tents in His Word and learn it. We cannot just dock a boat there for a day and peruse whatever is close or set ourselves up in a hotel for a bit, hitting the high points if we feel like it. It takes something much more intimate and personal. We must trek through all of it, dig down deep, and make it so familiar to ourselves that we know how to act according to it in any situation. 


 The secret to it is that when it is part of you, there are no secrets. 


"...A city set on a hill cannot be hidden." - Matthew 5:14

Monday, May 16, 2016

Jellybean on Wheels

 Now is a good time to share something different. It will be the perfect distraction for me and maybe helpful to someone. 

 Jellybean turned two not long ago and I had been feeling a little sad that he was stuck wherever we set him. When he gets bored with the toys around him, he just zones out. 

 Toddlers should not zone out. They should be into everything and running you ragged as you chant "no" all day. 

 Jellybean is still working on learning to sit up by himself so we sit him up or put him on his tummy and there he is until you finish what you are doing. 

 I don't like it but sometimes I do need to clean or use the phone or fold laundry or cook. So I headed to Google and special needs forums to try to glean some idea of how to remedy this situation. That is when I came across the Bumbo wheelchair. Get on Youtube, search it, and prepare to be amazed. 

 Doubt lingered that it would work since he has trouble coordinating his arms and hands  and has weak muscle tone but I had to try. 

 I found a supply list but no instructions. Maybe people are afraid of liability issues so let me preface this by saying that if you use any information here you accept full responsibility for the outcome and/or any injury. This chair is not perfect and could probably be tweaked to be better but I am not a professional builder or professional anything, just a dorky stay-at-home wife. Having said that...

 Here is our homemade baby wheelchair: 
(Photoshopped helmet to protect his identity...sorry, he is super adorable)
  As you can see, we did not use the Bumbo seat. The seat we used has a deeper seat, a removable insert, and a handy tray. Of course, almost everything was purchased on Amazon since we do not get out much. I will provide links to the items we used. I bought the nuts, bolts, washers, and brackets at the local hardware store so I could be sure it was what I needed. 

 On Youtube, they build the wheelchair and within minutes, the toddler is zooming all around. That was not our experience at all. 

 We spent weeks with backaches from bending over to make him use his hands and move the wheels. Each time we made him push, we said, "big push." We did not use it everyday and if he did not want to sit in it, we did not make him. It was a long, slow process. We were about to give up. 

 And then...

 one day he was playing at his activity table and he realized that he could lean and pick things up off  the floor. He started dropping toys on the floor and picking them up. One toy bounced out of reach and he put both hands on one wheel and pushed. 

 Oh, the look on his face! That is when possibilities came open. At first, we had to put his hands on the wheels and tell him to push but he could do it without our help. He had trouble getting his hands back on the wheels. 

 And then...

 not too long ago, he did it on his own. We just had to tell him to push but now he can push without prompts. It is slow and hard work and he does get distracted but I cannot tell you how excited I was when, on his own accord, he pushed 2 feet to get to the coffee table and pulled off the laundry I had just folded. It was AWESOME! Our therapists are amazed, too.

 Now we are working on teaching him prompts for learning to turn. We say, "left push" or "right push" and we still use "big push" for using both hands to go forward.

 Does this mean he won't walk? No. Who knows if he will walk one day. We are working on what he can do right now. This wheelchair means that he has freedom to explore, develop, and be part of life in a way that he could not before at his level.

 His brain is opening up to new ideas and thoughts. He is turning into a toddler right before our eyes and all because he can do something all on his own. God has made our bodies adapt in such amazing ways. What a blessing to watch!

 If you have a little one with developmental delays, consider trying to put one together. Here is what we used:
- (1) Seat  (be sure to keep the safety belt attached. Even though our wheelchair does not tip forward, it sits angled forward and if he leans forward, he can tip out so buckle up for safety. The tray is handy, too)
-(1) Base (we cut this into a u-shape because it makes it easier for him to maneuver closer to toys and the wheels attach better closer to the seat. You do want to be careful not to get the wheels so close to the seat that little fingers can get caught)
- (1) Back Wheels (This is a 4 pack. I like the 5 inch wheels for the back. I tried 3 inch but it was awkward. I did use a smaller 2 inch caster in the front)
- (2) Side Wheels 
-(1) Axles (this is a 2 pack and I used one for each wheel to be sure that each wheel could roll independently so you can turn on a dime. There is a pic below that shows how they are attached under the seat. They are at an angle so the wheels are slightly angled out)

 We put the seat about 5 inches from the back of the base. At first we just cut out sections for the wheels so they could sit close to the seat but then we realized that it was better to round out the front so he could get closer to his toys. 
(bottom, you can see our updated u-shape and where we put the wheels)


 On the side of the chair are two arches that look like they are waiting  for wheels. I measured up from the bottom about 3 inches right in the middle of each arch and drilled a half inch hole. 

 Under the seat, I measured about 2 inches down from those holes and drilled half inch holes so that the wheels would sit at an angle. These holes do not go all the way through to outside of the seat. As you can see from the picture, I did some pretty ugly gluing with Liquid Nails to keep the axle in place but I need to redo it because it is not holding it in place. 
(Axles crossing each other and sitting at an angle under seat)
 Put the axles in place before you attach to the base. It will be a lot easier. To attach the chair to the base, I used L-shaped brackets bolted into the base and the seat as you can see from the following picture. 
(L-brackets, 2 in back and there is 1 in front)


  Once you attach the seat to the base, you can add the wheels on the bottom. The side wheels have 2 washers between them and the seat to keep them spaced far enough from the seat to give enough room for fingers. Then you just add a nut to hold them in place. 
(Front with updated u-shape and no insert. The front wheel is bolted into the bracket)
 At times, we do have to tighten everything up. The whole thing cost about $120 which is a steal compared to $700-900 for a chair like this. We are getting measured for a regular wheelchair but this one will still be our playing chair because he is at the same level as friends and it makes toys more accessible. Let me know if you make your own and remember, don't give up if your little one does not get it right away. It is worth the effort.