FAQ

DID YOU KNOW DURING PREGNANCY THAT HE WAS GOING TO HAVE THE MEDICAL PROBLEMS THAT HE DOES? WERE YOU OFFERED ABORTION AND DID YOU CONSIDER IT? DO YOU EVER WISH YOU WOULD HAVE HAD AN ABORTION?

Although I did miscarry twice before I got pregnant with Jayden, we did not have any idea that he would have any medical issues. We found out why I lost my two previous children (I have a blood disorder), so during my pregnancy with Jayden, I had to be on a lot of medication and give myself two shots of blood thinner each day. However, even with all that, the only “risk” we knew of was that my cervix could open prematurely, which could cause me to go into early labor. At 27 weeks, I received steroid injections just in case my cervix opened. I was also on bedrest. Well, that same week, was when I stopped feeling Jayden move and I knew something was wrong. He suffered a feto-maternal hemorrhage, which meant he was losing all his blood into me and slowly dying. With him and my daughter, I denied the testing that tells you there could possibly be a problem. So, I did not have an opportunity to be offered an abortion. Of course, had I been offered an abortion, I would have told them no.

Now 9 years later with all the medical problems he has, would I go back if I could and abort him? No, I definitely would not. I can no longer have children, but if I could, and I found out something was wrong with them, I would continue the pregnancy and have the child. However, I do not judge anyone who has or would make a decision different than mine. I will be the first to tell you, having a child like Jayden is hard. Harder than most people will ever comprehend. I have always been against abortion, but I have come to realize that facing a decision of keeping a child that could be like Jayden is a difficult decision to make. When I think about my daughter and if she had the decision to make. That is, to have an abortion because testing showed there were major medical problems with the baby, in the past, I would have said, oh well, have that baby. Now, I would never encourage her to have an abortion, but I would not try to talk her out of one if that was her decision. Having a child like Jayden is a lifelong commitment. There is no raising them until they are 18, it is forever, and I realize some people could not handle this, and that is okay.

WHAT MADE YOU MAKE THE CHOICE TO HOMESCHOOL HIM AND HOW DO YOU MANAGE TO GET ALL HIS ACADEMIC NEEDS MET? WHAT RESOURCES HAVE BEEN MOST HELPFUL?

Honestly, the biggest thing that made this decision for me is abuse! Non-verbal children like Jayden get abused so much. Physical, mental, and sexual abuse are extremely high in this group of individuals. They get abused by babysitters, teachers, other students, therapists, the list could go on when it comes to the situations this population has been abused by. This was not something that I could cope with. I went back and forth with the idea so many times to the point that I said okay, if something happens, I will kill the person and get justice for him. Wait a minute, he will be abused; I will kill someone and then spend my life in jail? No thank you; I will just keep him home! It doesn’t help that I know a few children like Jayden who was sexually and physically abused by people who were supposed to help them. It is just not a situation that I can risk putting Jayden into. Some people believe my fear is extreme, and maybe they are right, but they have not sat in a room with a child who has been sexually abused and saw the complete fear in their eyes and the way they completely changed after what happened to them. Now aside from this, I homeschool him due to his severe behaviors. I have tried a special needs school. I remained there with him, and I was brought in when his behaviors got extreme so I could help diffuse him. However, after a few months of this, I removed him from school. I just did not see the benefit of him going. Most of the day he sat with an iPad playing music and would not work with anyone. I could do much more than this at home, so we ended it. Will I ever send him to school? Once he develops a solid communication style and can understand right from wrong as far as interactions with others are concerned, then I will revisit school, but not until he can attempt to get out of a bad situation he is in and not until he can communicate it with me.

As far as his academic needs, Jayden is not even up to par with a typical kindergartener. So his academic needs are not what a typical 9 year olds or even a 4 year olds would be. Our homeschool curriculum is based on daily life situations. He is still working on things such as being able to feed himself, help with dressing, pushing his foot into a shoe, drawing a straight line, and holding a pencil correctly. Throughout each day, I honestly use every task for learning. It does not matter what it is; I am turning it into “work” that he doesn’t know he is doing. Lol. Simple things such as getting ready for a car ride might include working on fine motor by making him use his right (bad) hand, making him walk the parallel bars to get to his clothes, then working on his self-dressing skills by making him help put his shirt on. I think I need an entire blog entry just to describe his daily “schooling” routine lol. As far as what I have found most helpful, the PECS system is something we have been trying to implement along with the iPad. However, at this point, there are no actual homeschooling resources that we follow due to how severely delayed he is. Once we progress, then we will eventually have a more “standard” homeschooling curriculum.

HAVE YOU RESEARCHED OR CONSIDERED USING MEDICAL CANNABIS TREATMENTS FOR HIM?

I have research medicinal marijuana on numerous occasions over the last few years. I am extremely interested in putting Jayden on the marijuana CBD oil. However, although it was passed in Ohio, it cannot be legally obtained through a doctor and a dispensary in Ohio yet. Yes, hemp CBD oil can legally be purchased in Ohio and all other states, but there is a difference between the marijuana and hemp oils. As soon as I can get it from both a doctor and dispensary in Ohio, Jayden will be put on the oil. From what I have read and from the experiences people have had with it that spoke to, I believe this will help Jayden in numerous areas of his life. I honestly can’t wait to try it with him!

WHAT WILL HAPPEN WHEN HE GROWS UP AS AN ADULT WHEN HE IS TOO BIG FOR YOU TO HANDLE?

This is a hard question to answer because there are so many variables to answering it. In a perfect world, my health will remain good throughout my older years, and I will be able to still care for him just as I do today. Of course, working on his behavior is a major part of determining this. Provided he has no further prolonged seizures that increase his behavior; his behavior will continue to get better as I continue to work with him and medication is introduced. What many people want to know when they ask this question is will he remain with me or be placed in some sort of home or facility? My answer to that part of the question is easy; he will remain at home with me. If I physically cannot handle him, then I will hire someone to do it. I will hire multiple people if I must this way he can remain at home where he belongs. I also have Krysta once David and I get older. Asking her to put her life on hold to care for Jayden is not my ideal plan for the future, but we are a family, and we will all do what is necessary to make sure Jayden is cared for in the proper way. The only way he will ever live elsewhere is if cognitively he can decide to live somewhere else when he is older. If he ever expresses the want to live in a group home or some other type of living arraignment, I will not stop him from doing so, but I will never put him somewhere because I cannot “handle” him. I will do what I need to do to handle him whether it is moving family members into our home, hiring people to help me throughout the days or whatever it is that I need to do.