CARING FOR ANGELMAN AT SENIOR AGE! IT CAN BE DONE!

The routine of caring for a special needs person can be difficult or a very normal routine. In our senior years, this is what our life has become. Alex, our grandson, has been diagnosed with Angelman's Syndrome. Whether this diagnosis or any other that would require special needs and attention, it can be difficult....but not impossible!

I am writing about this today because seeing this in print you may say...."oooo...I couldn't do that..."! I would expect an armchair observer to express himself in that way...When the circumstances warrant "action", it is not an impossible task. It is that...a "task". Routine and time can help us to mold this task into our lives.

No..we would not search out this task to do on a 24 hour basis! That would be foolish! Some have chosen the caregiver as a profession because of a strong desire to help those that cannot help themselves! They go home after a shift.. Others find it repugnant to even consider it...What can I say....to each his own...The fact is: Special needs persons NEED help of others. How grateful they must feel when there IS someone willing to help out!

In my case, Alex is my biological grandson who was in need of a caregiver at age 3 1/2. We came in reluctantly...yes reluctantly! We knew nothing of our role to care for his needs. He was first diagnosed with cerebral palsy. Then he was re-tested and diagnosed with Angelman Syndrome (1990), a little known syndrome and little information about it. We had to do some research. The doctors and teachers knew little. I would send them printed information that I had, to share with them..

In all honesty, I haven't participated in all the new activities involving Angelman and the fund raising that is constantly going on through the Angelman Foundation. I truly feel the pain of our Angelman kids, but have become more involved in helping Alex personally. That is my choice.

A re-evaluation of our life, goals and expectations was now on the table. We had to consider Alex in our plans for the future. Where would he live when we are gone? Would he have someone care for him in the same way we do? What about his needs, likes, dislikes...would they be considered by his new caregiver? These are important questions to the continued good care for Alex!

We have a SPECIAL NEEDS TRUST for Alex so that he continues to be provided for in his future.  This Trust has only a limited reach as our hope for the future is based on the promise in the Bible. We believe Alex will be able to run, jump, speak and otherwise be in perfect health soon. This belief in based on the scripture at Isaiah Chapter 35 and Psalms 37:11.

So, how do we do it at an advanced age? We keep our faith alive by attending our christian meetings at the local Kingdom Hall and take Alex with us. We work at keeping ourselves healthy, and Alex healthy. We participate in upbuilding events. We help each other in the tasks involving Alex. That is, we take turns. We realize the "spirit is willing but the flesh is weak".

Alex is now attending an activity center during the day. This allows us to have lunch together, share in the ministry together and just relax. The daily task of caring for his toileting needs and always looking for easier ways to care for this need, preparing and feeding him although there are times he can feed himself with assistance, showering, always looking for diversions that suit Alex, preparing him for our christian meetings, and a multitude of other things only becomes easier BECAUSE WE LOVE HIM!

Sometimes this love is conveyed by seeking out a group home where he can be with his peers. Sometimes parents need this break. No blame..no shame...It works for some parents and in some cases it is the ONLY solution. These ones are not to be judged...Love can also be demostrated by letting go!

The most important thing in caring for Alex is providing the best for him. He has a big family and would feel a sense of loss if he were to be separated from them! For now, the BEST is going on for him! Alex is now 25 years old!

If Motivation Is The Key, I Will Unlock Alex's Learning Ability

So far, I have used each day to stimulate Alex's thinking/brain for his advancement in communication skills. I have used his new tool, the iPad.

I found a great link, that is, it was my daughter's referral! 
On YouTube, there is  a young man named Joe Penna who makes videos under the title of THE MYSTERY GUITAR MAN. It was an immediate hit for Alex, as he just loves this type of comedy! Joe Penna also has some interactive funny stuff. This is going to serve well as a final touch on "working" the iPad. Hard consistent work comes first then the funny stuff! After all, that is the principal purpose of this techie gadget! But Joe Penna IS funny! Sorry, I couldn't show his video..Copyright issues!  You can look it up for yourself. Check out Alex's complete enjoyment from one of Joe Penna"s video!

It feels good to see Alex enjoying himself. Mr. Penna had the opportunity to see Alex's reaction!


It took awhile to decide on the purchase of such an expensive item (iPad). At least, expensive to me. Although, Alex has his own funds and I try to be conservative with his money. This was a good deal...a learning gadget. It is up to me to be consistent. That is the key! REPETITION is RETENTION!

ANGELMAN SYNDROME parents can appreciate how our children can learn through consistency. Trouble is, we are so wiped out by the end of the day that determination becomes the factor then motivation...maybe a miday nap will help! :) For some children, diversion and funny stuff as mentioned above is best for the child. There are different levels of functionality.
As for Alex...learning is priority! I think he can do it!

Video of Alex Learning His New iPad With Diagnosis Angelman Syndrome!

When Alex received his iPad, he was curious and excited but a bit apprehensive. I explained as well as I could how we touch it not slam it! Alex, with his diagnosis of Angelman Syndrome has shown us that there may be some cognitive skills to be tapped. I am so motivated to help him communicate with some new applications!

Of course, this has to be handled in a deliberate, consistent way. There will be fustration on my part, I know. My desire to see him go to the next level is keen, butI need to be patient.

There will be funtime on the iPad after he has done some work. Today I uploaded the application AUTO VERBAL PRO from the iTunes site. Alex is non-verbal, so this app will work just fine to begin with. Later on, there might be a more complex application for him!

I intend to document his progress or at least our sessions, whether or not he makes great strides. His focus on the screen makes me think that he is willing to learn!

I participate in a group of Angelman Syndrome parents. Their input in regards to this iPad "tool" has been helpful! I have learned alot from the comments on their wall! Our Angelman kids (adults or children) have a potential that we do not know about yet.
I say expose them to the learning tools and see what surprises we experience!

                              Alex fascinated by his iPad!!

The two still photos show the day he seen his iPad for the first time!

I have hope that he will learn more than I can imagine with my consistent effort with him!

ALEX WILL GET HIS APPLE IPAD!

Alex with his limited motor control, will have the opportunity to show us what is inside his brain! His IPad was ordered yesterday. Alex is 25 years old and non-verbal.

Alex, with Angelman Syndrome, has not had a high tech device, like the IPad to show us what he can do. He loves the computer and the dvd player, but fumbles with it as it is not "special needs friendly" as we have seen! Aside from a "special equipment" used at schools and centers that could accomodate him, a tool as the IPad is what he really needs for home.

It is rather simple in structure, but will have a variety of learning tools for him. He could even have a face to face with a friend in Britain that also has an IPad. We are looking forward to it.
I will have to teach him the programs which will be ongoing. That is ok. After all, it is a brain stimulator for him!

Alex has never rode on a bike nor driven a car. He does not know how it feels to come down on a sled in the snow. He has never taken a dive into a swimming pool...what's the big deal about spending almost $700.00 for his IPad. He will love it. I know he will!

Buttons..cause and effect are fascinating to Alex...We will get programs that will help him learn and strategize....although limited in his abililities...he is going to get the opportunity!

Buttons.......I remember when he walked out of the doctor's office, unnoticed by me, and headed for the elevators....Buttons......he pushed the button, elevator opened, he walked in.......I caught him just in time!  He's come along way since then..he's an adult now....Let's see what he can do!

I was offered free engraving for the back of the IPad! I made up and appropriate saying. It says..."This is Alex's Apple" "Get his permission if you want a byte"

I definite will post a photo of him with his new IPad!!  I am today posting an older photo of him. I guess we can caption it Alex waiting for the UPS truck!

Getting Old......!

I have always been an active woman.In my early twenties I already had four children from a early marriage. I sewed, cooked, baked and engaged in volunteer work each month. Since then, I have had and additional two children and raised two grandchildren! An active life, indeed! 

I am now seventy years old. A grandmother, great grandmother and caregiver for my adult grandson. Chores do not come as easy as before. They do get done at any rate.

My health is very good, and I am not taking medication for any ailments. Calcium is my daily vice.

When I get off a chair, it takes a few seconds to stretch the kinks out before taking my first steps.

First steps? Sounds like there might be some truth to the saying about the cycle of an older person reverting back to a baby. In a sense, the deteriorating body becomes frail as to need help to function.

Some of us will need assistance in walking, eating and caring for our personal hygiene needs.

If that should happen to me, my hope is that I will NOT become a burden to my family. If I should need help, I am hoping there will be a handful of willing workers. However, my observation is that the younger ones have so many diversions at their fingertips that we have lost the physical touch of humans to that of indented squares of our keyboard that is strategically placed in front of a moniter. Yes, technology! Who wants to be caring for the personal needs of an individual when they could be moving as fast as their fingertips on the computer!

I am sure that there will be some caring persons who will be available to be of assistance to me. That is, should I need the help! I am working hard at keeping ME as healthy as I can.

                                 

Check out my video above when interviewing two children on the subject of OLD!

Sickness and Death Make It Go Away! It Will!

My belief in the Bible gives me the faith that sickness and death will be events of the past...soon!  Revelation 21:3, 4.

At the present time, we are thinking of our young friend (young enough to be our grandson) who is ill with an unknown diagnosis. He is currently in the hospital. It appears serious! Too young to be plagued by this kind of illness, currently unknown!

Then there is the family member who has recently been diagnosed with stage four cancer! He is not doing well as expected. Ironically, he retired 8 months ago and found out his diagnosis two months ago! This is a dark cloud over us at this time!

Two other family members, age 85 and 90 live 400 miles from us. They have been married 62 years! We check on them by telephone routinely. Because of their age, it is important to us to be at the ready to mobilize for any emergency changes. They both have been part of our lives for many years. We worry for them! Thankfully, they are in a community of fellow worshippers at the local Kingdom Hall.

Illness can strike at any age. Death can, too! Our view of death prepares us for the eventuality. The unconcious know nothing at all says the scripture. Ecclesiastes 9:10.

The older couple mentioned above worked tirelessy in the ministry and were models of showing hospitality to others. Now their weakened bodies has slowed down. However, they continue to do what they can to participate in showing love to their friends.

Years ago, she would prepare a large meal for families she wanted to know better. They had a table that seats six. They were two and their adult son (with Autism) would sit on the couch with a TV tray. She had room for four more persons at her small round table. That is how she did it for 50 years as I remember it! She is a great cook! Her husband helps out now. They are a joy to see, working together in the kitchen at their age!

We know that we won't have them too much longer. The scripture cited above helps us to be hopeful for something better. It is a strong hope even they embrace. We are all Jehovah's Witnesses and our hope is strong! But losing anyone in death or watching them suffer an illness brings sadness to us! It is NOT normal to lose someone in death! It is not something we have to accept. We look forward to a time when we will not have to speak of death or illness!

In the meantime, we console each other when it does happen! We will explain to those that don't know, why death occurs and why we get sick. The bible has those answers!

My personal sadnesses are not  unique. I know there are many out there who are suffering losses!

We look for the time when sickness and death are gone forever! It will be..!

Conference Meeting Brunch and A Walk Through Old Towne San Diego

Friday started with arrangements for my husband to attend the conference meeting about Alex at the activity center...alone. My energy level from allergies had just zapped me. Then it occurred to me that there is a necessary annual meeting right after the first. I HAD to go..no choice! I began to dress. Since I had been at home all week trying to feel better (I hate taking meds) I decided to look nice, in case I could convince my husband to go somewhere while we were out!

The meeting turned out well. Alex is really liked at the center and they find him very social and easy to get along with. Angelman Syndrome persons are very social, and although they can be problematic with some issues, all in all they are happy people! A syndrome of choice..that is, if one had a choice!

So, now lets go eat brunch! I wasn't too hungry, as I had coffee and a roll for breakfast, but I wasn't going to resist. After all, I hadn't been out all week! The alternative was to go directly home. I am a homebody, but I needed to stay out of the house for this particular morning and longer if I could swing it! I brought up the suggestion of going to OLD TOWNE here in San Diego.

We live in the San Diego area, but would you believe that we have not really appreciated all there is to see there, in regards to history of this state! My husband had no enthusiasm for the suggestion. Counter offer: Let's do an errand in National City then get on bus and get there directly with no worries about parking! I wasn't enthused about that. This was my first day out of the house in a week and didn't feel good about being on a noisy bus! Then silence...nothing was decided.

After our meal was over, we started on our way home without a word...I was thinking that I had to go by myself in this case. I didn't want to force him to go. He had things to do at home! At the last minute, he parked and said "let me pick up a few things, I'll be right back out". We went to OLD TOWNE together and took our time looking at all we could see in two hours. Of course, my camera came along. I took pictures and video of our two hour staycation!

Five minutes after we arrived at home, Alex arrived! We used all morning and afternoon doing nothing super important...just relaxing!

I am in the process of editing the video and pictures. I will attach them to this blog when it is ready, which should be sometime today, Saturday!  Ooops! Couldn't get the video uploaded, so here's some photos...!

The Day After Family Dinner Night

Well, my son-in-law Jason did a great job in preparing four pizzas last night for Family Dinner Night! Surprisingly, we almost consumed ALL of them...He refused to share the herbs he used on the Margarita pizza. No...nothing to do with the drink. There were 15 of us here this night! I say, that only Colonel Sanders and the "cookie lady" (her name escapes me) have the right to withhold ingredients. Jason brought all ingredients in containers. Had I known that he wasn't going to share information, I would have peeked!

Credit for good prep and patience making the pizzas goes to JASON!! He has been at home as Mr. Mom for a few months now and has acquainted himself with the kitchen quite well! He also makes pancakes, waffle and BBQs quite well! Didn't take photos this night!

The noise level with six children in the living room while we sat in dining room, was tremendous! Or would this be an indication that I have now moved on to the next level of senioritis!  I had a daycare and don't remember the impact on my ears to this degree! Oh well, they are my grandchildren...once in a while is ok! But I think I still have it! All I have to do is say "we get dessert AFTER the toys are picked  up". It works!  Last night, we started something new...each child gets a "ticket" (a piece of white paper). They were to get in line with their ticket and wait their turn and hand the "ticket" to the server for their dessert! Somehow they are more patient while waiting. That "ticket" is their guarantee that they WILL get dessert!

So much for my adventuresome midweek dinner! Pictured here is Jason with my daughter!

Early Start of This Wednesday

Today, I am an early riser as I ended my yesterday at 8:00 last evening. Very tired, probably because of some allergies I am coping with. At 3:00 am I was ready to start my today. Trouble is, the day isn't ready for me. Others are still sleeping. I have to keep relatively quiet. So what is the advantage of getting up so early?

For one thing, I can blog, which I am doing now. The clicking of the keyboard is minimal. :)
My today will be full. I will need to take a midday nap to feel refreshed for this evening. We have planned a family evening dinner. We will be eating homemade pizza that my son-in-law volunteered to prepare for us. I will make some macaroni and cheese for the children as per their request. We have had family nights for so many years, we have come to expect it. There are now five grandchildren to add to the table. Soon they can add in a dish of their own!

Yes, I will use the quiet part of this morning to read. That will make it all worth it!

Recollecting My Thoughts..meditation

Some need this reflection, some can do without it. I need it...and occasionally! Some call it meditation..but in a good sense. Not filled with random thoughts, but deliberate. That is how I can benefit from this time of concentration. Let's see..I've got to get back on track with my goals. A temporary interruption with my plans. But back to the drawing board. Now that Alex is going to the center each day for special activities, I can get back to the volunteer activities I have shared with my husband.

Family illness has forced a change in our schedule. At the end of this month will end a three month family stay in our home. Illness has made it necessary for a family of five to move in with us. This has been a change that has tested my emotions, patience and endurance. Only because of a change in routine. A routine that I have been accustomed to for some years now.

Now in November, that will change. My husband and I have always been there for those in need, serious need! In this case, it was no different! I am reflecting back on the times we have opened our home to friends and family on a temporary basis. Listing those occasions serve no purpose, except to say "we have done our part" We are now seniors that need a simple life style. Our life style of choice is the ministry. That continues to be our goal!

I guess I need to meditate on the reasons I want to fulfill my goal and "stop" taking on the responsibility of additional life changes! Caring for our special needs grandson Alex who is now 25, is enough for us.

Yes, I think we have done our part. This is the reasonable, logical part of this thought process. I need to work on the emotional part of this decision! Thus, meditation!

I think I am getting better at saying no when there are other alternatives.