Keep Calm & Carry On

         

     

                                    

                                                  Ben’s Prognosis

January 2008

As I write, Ben’s prognosis is largely unknown. His earthly development is still under way, he is still mostly an enigma to his doctors and the specialists working with him and of course to us, his earthly parents. The only sure thing that keeps me going all the days of my life is found in 3 Nephi 12:8: “And blessed are all the pure in heart, for they shall see God.” For all the worrying that I do about Ben’s intellectual development, I do not worry about his spiritual well-being because I truly feel that he is one of the pure in heart and that he walks with God.

At twelve and a half Ben still has a long life in this mortal sphere to face the hardships all individuals with developmental disabilities have to deal with: middle school, high school, job training, employment, independent housing, conservation of guardianship and a host of other issues too numerous and at times painful to consider. These are not so important spiritually speaking but if there are not dealt with appropriately, if Ben’s temporal house is not in order, misery is sure to ensue and his spiritual development will be impeded, regardless of his prognosis.

The next few years will be crucial for us in determining what sort of care we want to establish for Ben as he gets older, who will retain power of attorney for him, what employment to train for, etc. Being a teenage boy with autism is ever more complicated than just a regular teenage boy and that isn’t a cake walk either...

So much faith and so many prayers will go into this season of Ben’s life; I know it will be very hard. But I am made stronger by the ten years spent at this already: I know what it takes. To win the fight, to “play the game”, to be victorious, we will need to be the best parents we can be and never tire along the way, never leaving any stones unturned and endure to the end.

Elder Dieter F. Uchdorf defines to “endure to the end”: “Enduring to the end implies ‘patient continuance in well doing’ (Romans 2:7), striving to keep the commandments (see 2 Nephi 31:10), and doing the works of righteousness (see D&C 59:23). It requires sacrifice and hard work. To endure to the end, we need to trust our Father in Heaven and make wise choices, including paying our tithes and offerings, honoring our temple covenants, and serving the Lord and one another willingly and faithfully in our Church callings and responsibilities. It means strength of character, selflessness, and humility; it means integrity and honesty to the Lord and our fellowmen. It means making our homes strong places of defense and a refuge against worldly evils; it means loving and honoring our spouses and children.” 

That promise of enduring to the end from an Apostle of the Lord helps me stays focused on what I need to do, so that I know what to do first. Then I can do the rest to be assured that Ben’s needs can be met, and also to take care of his sisters. It means that all will fall into place for my son because the Lord will take care of Benjamin through me, as I honor my covenants.

Dr. Kuperman himself, Ben’s pediatrician, has no way to predict what Ben will be like in ten or twenty years from now, what he will be able to do. I have seen miracles happen in Benjamin’s life, enough to fill me with a sense of awe and a knowledge that the Lord is in complete control. Do I still fret and worry? Well, of course I do, to some extent, but not as much as I used to.

I have gained a wisdom the past ten years that fills me with an uncertain peace, but a knowledge that no matter what happens, all will be well. Ben will be alright. Ben has always been alright. It is us, all around him, trying to work out our own salvation, who need to be careful and step lightly as to not make the incorrect choices, let we be separated from him in the eternities. Sure we will continue to guide him in this jungle that is the telestial world. And he will continue to inspire us to live a life worthy of the celestial world.

But as to what level of education he will obtain, what occupation he will have, that is still very much undetermined, although each passing day he is getting further and further behind his sister Angelique who is in fifth grade this year. Ben is supposed to be in sixth grade but is only reading at first grade level at the present time. Keith and I are not expecting him to become a rocket scientist, we only want him to be reasonably happy for the remainder of his earthly days, until the veil is finally lifted from his consciousness once again and his glory and former eternal knowledge restored to him.

We want him to obtain knowledge here on this earth as well, for it will go with him into the next life, we want him to excel to the extent possible for him. Elder Boyd K. Packer, in an article that all parents of disabled children must read, “The Moving of the Water”, given at General Conference of April 1991, quotes our beloved prophet Joseph Smith: “All the minds and spirits that God ever sent into the world are susceptible of enlargement.” Elder Packer also says that “every quarter of an inch of physical and mental improvement is worth striving for.” And how I believe him! If not, Ben would still be the non-verbal and very unhappy soul that he was at two years of age! Indeed every effort must be made for improvement while in this mortal sphere!

This picture was taken at the Seminary Graduation last year: Camie graduated after 4 years of early morning seminary, it was Angelique's 1st year and Ben's 2nd year! Keith and I are his teachers ☺ Not always an easy task, but he IS learning!!

                                             June 3, 2013

         This was the very last “flashback” of the Kingsbury Family Journal of 2008. From now on, every post of this blog will be “live”, so to speak ☺ I will do my best to fill in the space between 2008 and now, with all the many relevant events that have transpired in our journey with autism. Putting my thoughts out in the open has certainly been an interesting exercise. It has helped me realize the depth and breadth of the Lord’s mercies and blessings throughout the years.

I know that there are many parents out there going through many of the same experiences as Keith and I are. I wish we could start more of a dialog but it hasn’t happened yet. Maybe later ☺

For today, I will just continue to discuss Ben’s prognosis, which hasn’t changed much since 2008. He is finishing up his junior year of high school, still in center based special education classes. He loves art as evidenced by several previous entries. He also enjoys sports: softball, floor hockey and soccer; he will letter in all three once again, for the fifth time in a row, this year! Our wonderful bishop, Bishop Henstrom, reported that when he interviewed Ben for his birthday interview, he said that his favorite shows were Winnie the Pooh and Blue Clues ☺ Oh boy… He also likes Bill Nye the Science Guy actually, but probably couldn’t think of it “under pressure” in the interview. Sweet innocent Ben…

                          

I reckon that he hasn’t changed much in the past six years, and he probably will not change much in the years to come. This world will always be difficult for him to navigate. But I have come to realize that any progress made is a miracle and a gift, and any obstacle conquered a manifestation of God’s power in our lives. So all is well and all will be well. Not easy! But as it should.