Back to School Time Already

Hard to believe summer is almost over and kids are just about ready to head back to school. If your kids are anything like mine, some are excited to go back and others not so much.

I have one child starting a new school this again this year and I have tried throughout this summer to make it something exciting and a good thing for him. He is actually excited for this school year which I am thankful for. I have been trying to get him on a school schedule for his sleep but as we all know that is so difficult when it is still so light outside at 8 p.m. We also found out that his school will be giving all the kids free breakfast and lunches this year. That is such a big help to us. He is going to the open house and can not wait to meet his teacher and see the school and his classroom. With his dad being gone right now it just makes me happy to see how much he has grown and he has learned to handle things even if he does not necessarily like that he has to do them. He has his backpack all ready to go and even has his outfit picked out for the first day.

Then there is his brother who should be excited this year since it is his last year of high school!!! He has never been a morning person though so school is always tough. It is hard to believe this is his last year. I still remember taking him to kindergarten. You wonder where the time goes. Since he is not excited at all he still has not bought anything for school. No backpack, no pencils, and not even a notebook. I think he likes to drive his mother crazy waiting because I like to organized and have everything done and ready. He waits until the last minute or after and then maybe he will do it. Some things will never change.

This school year is just different somehow for me. I am glad they are going back to school and that at least one of them is excited but yet it is a little sad this year too because another child is growing up and as much as you want them to do that it is hard to let them go. I hope they have a great year!!!

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SMA Awareness Month

Spinal Muscular Atrophy Awareness Month is a public health and awareness campaign focusing on the leading genetic cause of the death in babies younger than two years of age. It is for increasing awareness of spinal muscular atrophy including the availability of carrier screening. Spinal muscular atrophy affects all types of individuals from different ethnic predilections. In many cases, there is no prior history of the disease and the newly born baby with SMA appears normal and healthy. However, over time, the lack of muscular development becomes debilitating. On the other hand, intellectual development is normal. The muscle weakness usually leads to respiratory failure and general failure to thrive.

There are 3 types of SMA with different degrees of severity. The problem is that there are only limited treatment options available. About 1 in 40 individuals are not aware that they are carriers of the recessive gene for SMA so genetic screening for couples who want to get pregnant is the best option for preventing it.

The American College of Medical Genetics believes that all couples who are planning a pregnancy should be offered SMA carrier testing. This is in order to give families enough time to make informed decisions when it comes to reproduction. However, the American College of Obstetrics & Gynecology still has not made a formal statement in connection to SMA screening. Thus, there are varying practices among physicians with some offering it and others not offering it.

The purpose of Spinal Muscular Atrophy Awareness Month is to raise awareness of the deadly disease. This includes informing the public that SMA genetic screening is available and this is the best prevention. It is also for strengthening the fight against the deadly disease and supporting research for the purpose of finding a cure. It is also a time for supporting individuals suffering from the disease along with their families who suffer with them.

According to parents of children with SMA, the experience changes them forever. Their strength and courage is continuously tested out of love and devotion to their children. However, emotional and financial stress cannot be avoided. In fact, the cost of caring for a child with SMA is in between $260,000 to $3 million. This points to the importance of knowing your risks ahead of time by undergoing SMA screening before you get pregnant. For Spinal Muscular Atrophy Awareness Month, think about your family and friends who are planning to start a family and give them a reminder to asking their doctors about SMA screening. More importantly, to honor of those who have suffered because of SMA, help spread the word.

 

Walter’s Success Story

On a cool September day Walter entered into DCIL, homeless. He had been referred to us by Social Security for our Representative Payee Services.  Walter had been living at Ruth Meier’s Drop in Center and was looking for housing. He had no transportation.  This once very hardworking, intelligent man was now walking a different road in life; an unexpected road caused by some disabilities he had acquired.

One of the first services he received from DCIL was assistance with filling out a Transit application.

Walter, a pleasant, single man, stated that he was motivated to acquire housing and a job. He chose to be a consumer at DCIL and agreed to work towards the goals that he would set for himself.

In the course of the 8 years that he was a consumer at DCIL, of the 16 goals that Walter set for himself, he completed all of them very successfully. Community based living, transportation, personal resource management, self-advocacy, self-care and learning new technology were a few of the goals he had set and he was always willing to work diligently towards completing those goals. Walter has a strong work ethic and started his independence by working for Command Center. There were struggles, there were challenges, and Walter worked diligently to overcome those by self-determination.  Walters’s successes were many, but he understood that this was all a process.  As he grew to become more and more independent, he always wanted to work as much as possible according the rules set up by SSI.

He was able to move into the Lewis and Clark Building in Mandan where he lived for 8 years as he was rebuilding his life. He was always very grateful for the assistance.  He was determined.  He received assistance from West Central Human Services in Bismarck and Community Action helped him with Shelter Plus Care.

His advocate at DCIL wondered about his family. Walter stated he had a sister residing in Hollywood, CA. The advocate located her on Social Media and after 10 years, Walter was reunited with his sister, elderly mother and family.

While he was in ND, thanks to Medicaid Benefits, he was able to communicate his physical impairments and receive the medical help that he needed, including getting on a vitamin regiment. While enjoying the newfound health, being determined, he gave up smoking.

Through weekly communication with his sister, he has decided to move to Ohio and be there for his family.

Walter, always the optimist, once stated when asked what it felt like to be homeless, “How can I be homeless, when I have the sky above me, and the earth below me?” While visiting with Walter the week before he moved, we asked him, “Where do you see your life going from here?  What goals do you have before you?”  Walter stated, “I’ve done it before, I’ve done it before, I’ve done it before, I’ll do it again.”  Walter, good luck with the rest of your journey we call life.