Wednesday, March 26, 2014

Dying Is Not An Option


Parenting is not an easy job, but it is perhaps the most rewarding of any job out there. We teach our children right from wrong, feed them, nurture them, and prepare them for their own journey through life. Above all else, we love them unconditionally. We love them with every fiber of our being. They become the driving force behind all that we do.

Parents of children with special needs have a few extra responsibilities. They are immersed in numerous therapy sessions, have a never-ending schedule of meetings with schools, doctors and therapists, and they may have to work a bit harder when teaching children basic life skills. For me, while these things are all part of my daily life, worrying has also become a huge part of my life as a parent. All parents worry. We worry about our children and their development, their manners, their overall behavior. We worry about them making friends, doing homework, and getting into a good college. One of our greatest concerns is their safety. Every parent worries about this. We want to guide our kids through life and ensure their safety and well-being as long as we possibly can. This is a normal desire of a parent.

In this world, there is a natural order . Children typically grow and watch their parents grow old and eventually pass on. There are certainly unfortunate incidences when this order changes, and a parent may lose a child. This is every parents' nightmare, something no one wants to happen. It can only be described as an unimaginable heartbreak,one from which many parents never recover.

As a parent of a child with special needs, I worry about all of the above and then some. One of my greatest fears is that when I pass away, my son will not be cared for properly. I will no longer be there to make everything okay. I will not be able to oversee his daily life, help when needed, organize necessary things. I think of this often, and think of how he will feel and miss my husband and I when we are no longer here. Will he understand why we are not with him? When I find my self thinking about this, I think of the alternative. Will I possibly be able to live long enough to see my son live his life and pass on? To make sure that I am available to him throughout his entire life and see that he is taken care of properly and eventually laid to rest in the most beautiful way? Could I ever even endure such a thing? How would I ever be able to part with him and lose my child? I don't know that I could ever possibly endure that kind of pain, and so I try to push these thoughts out of my mind.If I don't,I find myself in tears. Yet, they are real worries, and eventually one of them will become a reality.

If I had to choose, of course, I would choose to pass first. However, as I see it, it is a lose- lose situation. So, we prepare as best we can to ensure that he will have all that he needs when we are no longer here. We prepare so that he will be provided for, and have a happy place and family to live with. Yet in the back of our minds, we wonder if anyone else will ever have the patience and love for our son that we do, and then the constant worry creeps back in. It is a non-stop, nagging worry that is wrapped in heartache no matter how you look at it. My son is fortunate. He has three brothers who love him. They will help ensure that he lives a great life. Yet, they will have lives and families of their own. It is a very complicated situation, and one that requires much thought and planning. I sometimes find myself wondering why a parent would be faced with such a predicament? Yet, my wondering provides no answers, only more questions.

It would seem that dying ,while inevitable, is not an option for the special needs parent,but of course, that is not a realistic notion. We will eventually have to leave all of our children, and after losing my own parents, that thought frightens me to no end. So what can we do? We have to look to the future, ask questions,and make plans. I also pray....it does not matter what or who you believe in, as long as you believe in something that gives you the strength to deal with these realities and make the proper decisions for your child. Sometimes faith is all we have, and it helps sustain us when we are faced with trials in our lives. I continue to have faith and hope that we are fortunate enough to be here for a very long time, because for now,death is not an option.

Friday, March 14, 2014

Vaccines

There has been quite a bit of controversy over the past few years about vaccinations and autism. It had widely been believed for a while that the MMR(measles,mumps,rubella) vaccine was a possible cause for the condition. However, more recent studies have provided evidence stating that this is not true. As parents, we take in all of this information ,process it, and try to make the best decisions we can for our families.

I believe that it is important to vaccinate children. Many lives have been and will continue to be saved because of this practice. However, I do take issue with the number of vaccines that we are giving our children at each visit. Some babies and toddlers may receive 3-4 vaccines at a single office visit, and some of these may be combination vaccines,meaning they contain more than one vaccine per dose.

After we found out that my son Mikey was on the spectrum, we made a decision to hold off on the MMR for our two younger children. My third child had already received one MMR prior to this, so we decided to hold off on the second until he reached school-age. We held off on both MMR vaccines in my youngest until he reached school age as well. We did this because at the time, there was still a great deal of uncertainty surrounding the vaccine. While thimerosal was said to be taken out of this particular vaccine after 1999, my trust level in the pharmaceutical companies was not high. We felt that we would wait to see if our children developed at an age-appropriate pace, and then if all was well, we would go ahead and give them the MMR. As for all of the other immunizations that they needed, we simply spaced them out. If a check-up visit required for example, a DTaP,oral polio, HIB or Varivax vaccine, we would allow the two most important, then stop in a month or so later for one more, then again later for the last. We never felt comfortable injecting the kids with so many at once. We were never pressured by our pediatrician to do everything at once. He understood our concerns, and while he encouraged vaccinations, he was okay with waiting a few weeks to receive all that was needed.

This is what worked for our family. I am not here to tell you that you should or should not vaccinate your child. I am neither a doctor nor a scientist,rather I am an educated,concerned parent. Every child is different and has different health concerns. What I will suggest,is that you discuss all concerns with your doctor. Evaluate the information you are given, then make an educated decision. This is especially true of flu vaccines, some of which still contain thimerosal. Ask your doctor the questions you want answered. There are no ridiculous questions when it comes to the health and welfare of your child. If your doctor makes you feel otherwise, then perhaps finding a new one who understands your concerns might be an appropriate action.

We all want to keep our kids healthy. Just remember, always follow your instincts, ask the important questions, then make the important decisions. No-one, including myself, should be making the decisions for your child. That is best left to you and your pediatrician. Stay informed and stay healthy!

Wednesday, March 5, 2014

The Beauty of Autism

Beauty and autism? Yes! We are always hearing about the trials, the difficulties, and the ugly episodes that are all a part of this disability, but I am here to tell you that it has a beautiful side as well. So beautiful, in fact, that it warms my heart and makes me feel blessed.It is a beauty that is so pure and innocent that nothing can compare, except perhaps that of a newborn child.

As a mother of four children, my heart is full. Like most parents,I love my children unconditionally. Each one of them brings something special and unique to our lives and our home. They are funny,witty, talented, and loving. They are also difficult, moody, stubborn and tough. However, we love them for all that they are, and enjoy watching them learn,grow and become themselves.

My children are all boys, and they are growing up too quickly. As they grow, they reach a stage where a kiss or hug from you in public is no longer allowed. They talk back at times, may not always be as respectful as we would like, and do not always heed our advice.It is all part of life's journey. While we do our best to teach them right from wrong, and guide them in the right direction, at some point they need to figure things out for themselves. While doing this, they may not be the most loving creatures on the planet.

My son Mikey, at 14 years of age, looks like a typical teenager,yet he is anything but that. It is not what he is incapable of doing that makes him different, but rather what he is capable of. This boy is innocence at its best. He is kind-hearted,loving, pure and beautiful. I am not referring to his appearance, which,by the way is also beautiful, but rather what is inside. He possesses such a sweet spirit that touches everyone he meets. How many teens do you know, especially boys, that will gladly accompany their parents anywhere? Hold hands with them in public? Happily accept a kiss on the cheek from them without a care in the world about who else is watching? Hug them so tightly that they cannot catch their breath? My beautiful son does all of these things.

While we may not be on the easiest of journeys, we never fail to see the beauty each day. We are greeted with sparkling bright blue eyes and a smile that can light up a room each morning. We retire each night to warm hugs,snuggles,tired breath,and sleepy eyes. We listen to sweet little songs hummed softly(and not so softly) throughout the night.We listen and our hearts swell, not only with pride but with love. There is such an unbreakable bond,a trust that will never go away. It is truly a thing of beauty,this love between us as parents, and our child. It is something that no matter what words I use, I still would never be able to convey these feelings as eloquently as I would like.

Yes, there is beauty in autism. It comes in the warmth of a hug, the sweetness of a kiss, the trust of a child, the innocence of a love so pure and true.....it comes in the heart of my son.

Tuesday, March 4, 2014

Force Feeding?

Autism comes with a wide array of challenges. One challenge that many parents face is that of food aversions. Many children refuse to eat certain foods because of their appearance, texture, taste or smell. It really is not that different from feeding a typical child. Some children want peanut butter, but no jelly...and if you accidentally get jelly in the peanut butter jar it can be disastrous! Some children will not eat if their food groups touch each other on their plate. Suffice it to say, we all deal with food issues with our children at some point in time. The real difference between a typical child with food issues and a child with autism and food issues, is how we handle it.

When my son was in fourth grade, a new aide was introduced to the class. She was a lovely lady who had a child of her own with autism. We all felt she would be an asset to the class, someone who really understood this life we were living. She was eager to work with the kids, and let us all know that she felt she had some great advice to shre with us on how to handle a variety of situations.

At that time, Mikey was a very picky eater. The only way I was able to get him to eat fruit was to give him baby food. I would send in a few plastic Gerber fruit containers with his lunch everyday because he loved them. In my mind, puréed fruit was better than no fruit at all. The last thing a parent wants is for a child to be hungry and crabby, because nothing productive happens under those circumstances.

Well, this worked well for us,until one day the teacher asked me to stop sending in the fruit. When I asked why, she said she would rather he eat age-appropriate foods. The idea was great, except for the fact that Mikey was not willing to eat a wide variety of food at that time. She told me that the new aide had some great ideas pertaining to foods and she would like me to come in and discuss their plan. I reluctantly agreed.

Within a few days, I was in the classroom, ready to hear the plan. Their plan was to focus on certain snack foods he enjoyed and slowly replace them with a similar healthier version. For example, since he enjoyed cheez doodles at the time, they wanted to replace them with American cheese.Sounded like a good plan, right? So my next question is how do we do this, because at the time Mikey disliked cheese. Their response was that they would give him a few cheez doodles on a plate.They would then stand behind him with small pieces of cheese and after a few bites of the cheez doodles, they would hold his chin and put a piece of cheese in his mouth. This way he would have to taste it. They also mentioned that I would need to sign some sort of permission slip allowing them to do this.

I didn't need to think too long and hard about this, and my immediate answer was no. I explained that I would never want someone to put something in my mouth without me knowing what it was or wanting it. I was a bit of a finicky eater as a child as well, and although I still do not eat meat, I eat a wide array of foods that I never would have touched as a child. I thought that aside from that not being an appropriate way to feed him, I also believed it would cause him to develop trust issues surrounding food, and possibly cause him to stop eating other things.

Long story short, they were not happy with me. The aide said this worked with her son, and he eats anything she gives him. I congratulated her and told her how wonderful that was, but it wouldn't be happening with Mikey. She was actually mad, and felt that I was not helping him learn about other foods. I explained that while it may have worked for her son, we were now dealing with my son and I did not approve of their approach. I would not sign anything, and while they were unhappy, they had no choice but to put the breaks on their plan.

Now, I know they meant well, but I refused to let anyone put things in his mouth that he clearly did not want. I would never let someone do that to me, and I was not about to let anyone do it to my son. The aide voiced her opinion to me often, but I let it slide off my back every time.

I have always been a firm believer in raising your children in a way that you believe will help them succeed. I think this is true of all of our teaching moments as well. Some kids will potty train early, others will not. Some kids try new foods easily, others do not. It may take some children longer than others to use a sippy cup rather than bottle feed. The bottom line? They all get there, just at different times. I am happy to report that by allowing my son to make his own choices when it comes to food, he has grown to love a variety of foods...cheese included. As a matter of fact, it is actually one of his favorite foods.That didn't happen by me forcing it into his mouth. It happened by guiding him in the right direction, exposing him to a variety of foods, and giving him the opportunity to choose whatever appealed to him. He may not be able to speak, but he certainly can make decisions for himself. We let him do just that, and it has worked out beautifully for us.