joyce

World Autism Day, April 2

autismday

World Autism Awareness Day is a non-issue for our family. We are aware of autism 365 days of the year. I can’t really see how people could not know about autism. Most families have someone affected at this point even if it is your second cousin on your mom’s side of the family who you only see twice a year.

I also can’t understand those people out there that want to “celebrate” their autism. They call it celebrating “neurodiversity”. You want to celebrate that your child is non-verbal, isn’t potty trained at age 14, must be supervised every minute of the day because he has seizures, and a whole host of other problems that require consistent therapies 12 months a year, then you go right ahead. But, please, don’t expect the rest of us to join in the celebration.

Do I love my son? Of course I do. But if my son could be typical, then I would want that for him. I mean, what are you working for when you are taking them to therapies 5 days a week? Isn’t the expectation to minimize the effects of autism on their everyday lives? How can you say you are celebrating that?

I pray that mainstream medicine wakes up soon to the fact that autism is a rising epidemic of our world. That doctors and researchers don’t continue to limit studies to only those of a genetic make-up as they do now. That they stop limiting any possible relief that these children and adults might find from CBD oil. Even the top pediatric epilepsy expert in the nation, Orrin Devinsky, admits the need for studies in the use of CBD oil for pediatric patients. Please start treating the co-existing conditions of autism and stop expecting parents to just ignore that their children are suffering.

School districts also need to wake up to the fact that the number of children with autism is rising at an alarming rate and those parents are going to be looking for services from their local districts. Most districts only have two pathways for children. One for regular curriculum students and another for life skills or significantly cognitively impaired students in a self-contained classroom. Some of these children with autism have normal or even above average intelligence. They might be non-verbal or need to be taught in a specific manner. It is a crime to put these students in life skills program. Please, please develop a third path for these students with an appropriate education so they can become self-sufficient in their adult lives and contribute to society because they are capable of that.

For those of you who know a family with someone with autism, how can you help them? Let them know that they are not alone because I can tell you that it is a very lonely life for that family. Show some compassion and give prayers of thanks to God that your child is not in the same situation.

Florida Shootings – Who is to blame?

Parents with children still in public school are saying their prayers that their child was coming home to them at the end of the day. Some parents in Florida weren’t so lucky. Perhaps even more frightening is that this incident was preventable. Those 17 lives that were lost that day could still be alive if someone was just paying attention.

Let us count the way that it could have been prevented. First the FBI had a tip in January that was not followed up like it should have been. Secondly the police had been called to the home of this individual 39 times. Thirdly the administration of this district had expelled this person and specifically noted in the paperwork “We are concerned about what he could be hiding in his backpack”.

Floridamoms

Who is to blame? Well, if you believe the Democrats, then that answer would be the gun, of course. Calls for stricter gun laws were immediately being called for. They didn’t even allow the grieving to have one day of peace before they starting crying the chorus. Other cries were for lack of mental health services and having to wait months for an initial appointment. Other people placed the blame directly on the individual themselves who were responsible for their own actions. Finally many blamed our society and it’s culture of violence.

Many schools in our local areas are reassessing their own security protocols due to this horrific event. Are there any other parents out there (besides myself) asking themselves, “Should I let my kid go to school tomorrow?” I certainly hope there are.

Confirmation for Special Needs Kids

confirmation

Does your church have a special program for your special needs child? Many churches do not. More and more families are falling away from the church because it simply doesn’t fit the needs of their family. The number of children born with some type of special needs has risen in the last several years. The 2007 Census report shows that 41 million, or 15% of children past the age of 5 have some type of disability. If your church has no program for these students, they are missing a huge opportunity to service the community.

Our church did not have any program that could help my son with his religious needs. Together, the church staff and I created one. My son is non-verbal but has typical intelligence. He only learns through technology. I shared my son’s public school records with the church and we created a program just for him. They assigned church members to him who were also employed as a public school teacher and a speech-language pathologist. They volunteered their time and worked with my son one hour per week for 18 months. He learned the same material as typical children learn for confirmation into the Lutheran church. He just was taught differently. He was taught in the manner in which he learns which is different for every child.

The picture above illustrates all that hard work being celebrated. He is pictured with his parents, family friend Christy Burgess and Pastor Chris Schneider of Beautiful Savior Lutheran Church in Lee’s Summit, Missouri.

Becoming part of the community is part of our goal for our children with special needs. Church is part of that community. It should be the first leap for these children as it will be one of the most accepting places that they will find. It can be a lifetime support for your child for times of celebration and times of crisis. If your church doesn’t have any such program, you can help create it. Just start asking questions and meet with your pastor to see the possibilities. After it helps your child, it can continue to help other children. You can write me at 2ndchanceauthor@gmail.com if you have any questions or would like information about the program that we created.

New Year Resolution 2018

It is that time of year for resolutions. What resolutions have you considered and did you ever meet any of those goals? As each year passes, it seems to be harder and harder to meet the goals that we set.

I recently read an article about setting up healthy goals. The writer talked about that it takes 21 days to set the pattern of a habit. I don’t know about you but that seems like a long time to me! Sometimes people seem to reach for the stars in their goal selection (just think buyer’s remorse here). I think it was be wiser and more successful for you to think smaller and to focus on yourself, not others.

As a special needs parent, I know that I often think of others before myself. Sacrifice! Sacrifice seems to be the buzz word by which I live. However, I really think, upon reflection, that is the exact opposite direction that my thoughts need to be leading. How can I take care of my special needs child if I can’t get out of bed because I have been putting everyone else’s needs before my own?

I need to be recharging myself at least once a week. Now my husband would define that as the hour that I go to get groceries. Is that recharging for me or something I do for myself? That would be a big fat NO! This activity needs to be for me and me alone. It can be anything that I enjoy – a long soaking bath, a visit to the local bookstore, a massage, a movie that I have wanted to see or a trip to Hawaii.

Does your family recognize your need to have me time? If they don’t, it is time for a serious discussion. I have gotten to that point where I need to the “discussion” with my family again. If there is a time that you need to stand up for yourself, this is it! If you can’t handle that discussion on your own, invite a family friend, your pastor or your local mental health counselor to give you a helping hand. You need this and you are worth this.

Christmas Season for People with Drama

Christmas is a fun-filled time of fellowship with our family members and treasured friends. It is comfort food, sugar comas from all the goodies that our Great Aunt Clara Mae has always made, and secret gifts from a jolly fat man in a red suit for all the children. One of our fun-filled tradition is the pass around gift. Someone reads “Twas the Night Before Christmas” and you pass a gift that you supplied (under $10) on to the next person each time the word “the” is read aloud. As you can see in the first photo, lots of fun can be had and you never know what you end up with.

Some families (okay, LOTS of families) have the black sheep family member who causes all sorts of drama in the other 11 months of the year. Do you think they can behave for one month for the good of the family in the month of December? Oh, no!! Of course not!

For people who have a black sheep drama person in their family, Christmas can be horrendous! If you never have contact with the black sheep person throughout the year, it always ends up that you will have contact during the month of December. And if it could just be a pleasant dinner where you suffer through each other’s presence with a minimal of fuss, I would be so thankful and go light a candle of thanksgiving at church. I’m thinking that NOBODY is that lucky.

These family members suffer horribly during the time of Christmas season. They dread the confrontation worse than a root canal at the dentist. They grind their teeth for days before and after the Day of Confrontation (we could start a trend that sounds like a religious Feast Day). They don’t sleep at night worrying about what is going to happen but knowing to the depth of their souls that something will certainly be happening.

If you have a friend with this kind of family that dreads the holiday season, I suggest that you have to be as supportive as you possibly can. It is like the cold weather warning to check on the elderly and pets. During the Christmas season, check on your close friends (or maybe it is even part of your family like a 3rd cousin) who have families with drama. Check on them frequently, go out to eat with them, take them shopping and give them plenty of opportunities to vent.

You don’t have to have any solutions. Just having someone to talk to about the situation is a stress reliever. It is such a struggle for them to make it through the holiday. They dread it like the plague, yet each and every year here it is again looking them right in the face. They need your support. Be thankful you get to laugh and have fun and eat Great Aunt Clara Mae’s Russian tea cakes. It could be worse.