Learning you have a child with Down Syndrome is overwhelming at first, at least for those of us who really did not know much about it. When I thought of Down Syndrome I generally just thought of mental retardation. Well there is SO much more to it than that! I didn't realize all the medical problems that came along with it. I did not even really care that my daughter had Down Syndrome because that information was immediately followed by the fact that she had a congenital heart defect and would need open heart surgery! My father just had a quadruple bypass the month before and it was very tough on him. Now they want to open up my daughter's chest, remove her heart from her body and fix it? No way! As I promised in my previous blog, I will one day share all about Down Syndrome but we are still on the subject of our decision to homeschool so let me get back to that. The point of all this is that all of this information about my daughter's condition made us seriously reconsider homeschooling.
Its not very often that you will find many people encouraging you to homeschool, unless that person already does so themselves. With every doubt I confided in to others they were always quick to confirm those doubts right along with me. The main argument we had is really a common argument for children with or without Down Syndrome: Socialization. However, this time it had a little bit different spin on it. It was not the general “they will miss out on all the socialization” kind of argument. It was spoken of as if that was all there was for our children! I would hear things like, “they are such social creatures” or “they thrive on socialization.” I begin to feel that my child had nothing else to hope for in life other than being “social,” they made me feel as if my daughter would never be able to learn. It was pretty frightening.
Then there was the advocacy angle. Many parents have worked long and hard for children like my daughter to be given the right to be integrated into the public school system, and rightfully so. While I do choose to homeschool I will fight along with families in my group for their children to have the right to attend school with their peers. My most basic desire for my daughter and others who have DS is that they have the same opportunities given them as anyone else would have. Our children have hopes and dreams like everyone else and should be given every opportunity to see those dreams come true. Well, some parents in our group felt that homeschooling would be taking a step backwards in the fight and I was told that I should reconsider for the benefit of every other child with Down Syndrome. They said it was important that I allowed her to go to school to be an advocate and keep the fight going. Wow, that really put the pressure on me. Could I harm the work that had been done for those kids by doing what I felt was best for my family?
The other main consideration against homeschooling was the special services my daughter would need. Before she was even two months old and we already had a case manager, para professional, occupational therapist, physical therapist and speech therapist that she saw on a monthly and sometimes weekly basis and all that was in addition to all the medical professionals she had to see. We had to teach my daughter how to do the most basic things like how to eat, roll over, sit up and crawl. Those things come naturally to most children, but my daughter needed someone to teach her. If I needed help to teach her that, how was I going to teach her the more complicated subjects on my own?
Well, of course the decision did not have to be made at the moment we found out her diagnosis so all of these doubts came up over the course of the first three years of her life. (While one might think I still had a few more years to figure it out, as I mentioned in another blog, at age three children with special needs are expected to enroll in a special needs preschool or a private preschool through which the public resources are available for PT, speech and stuff like that.) However, we had come a long way in three years and we had learned a lot about Down Syndrome. So much so, that our primary care physician commented that I would soon know more about it than she did, and I believe in some areas I did. Now that I was more educated about DS I felt that I might just actually be able to pull it off. A few events helped to assure me that was indeed the case.
When my daughter was born there was no Down Syndrome support group in our area. Another mother of a baby with Down Syndrome (he was 10 months older than Gess) contacted me about becoming a part of a new support group. She had one other person, her and now myself. We got together and started the Southeast Kansas Down Syndrome Society. It was great to have other people who had similar experiences to share. We all had basically one major concern and it was about the lack of information that was available to us. So we formed our group and committed to not only supporting each other but providing information for other families and teaching others that our children were more like other children than they were different and should be afforded every opportunity that any other child might have. Our group started to grow quickly but it was not long before we began to see some conflicts in our philosophies. We had a couple of parents in our group who had a negative attitude concerning our children's capabilities. We were working on getting a college scholarship fund for people with disabilities when one parent asked, “can our children even go to college” and another said, “you need to wake up to reality, your children are not going to be able to go to college.” Well, I do not believe that is necessarily the case. I think our children need to at least be given the ability to try. They may not always be able to succeed at everything they try but they most definitely should have the opportunity to attempt their goals. In fact there are many people with Down Syndrome who go to college and do pretty well. So anyway, I began to see that some people were always going to judge my daughter based upon her condition, not her potential. If some parents feel that way, how much more would a teacher? Do I really want her going to school where she might get some teachers who do not expect her to perform?
I also joined some other support groups which were for parents of children with any special need and they would hold workshops to educate parents about the IEP process and their rights in advocating for their child's public school education. I tell you, when you listen to the nightmares that many of these parents have gone through to get their child an appropriate education and how often the system failed to do that, it certainly starts to make the idea of homeschooling look like a viable option again. In fact, we had one member start to consider homeschooling who might not otherwise have thought about doing it. Meeting some of the paras that work with special needs children was also not an encouragement to send my child to public school. These people are paid minimum wage and have very little training and quite frankly some of them were not very bright. There was no way I would want some of them in charge of my daughter's education. Of course some of them were really great, but those people would probably move up or move on pretty quickly since the pay for this job was really horrible. One mother in our group had just that problem with her son. As soon as he got used to one para, they would leave and he would have to get used to another. It was quite stressful on him breaking up the routine every few months.
Then you find out some of the things they do with our children during the day at school for their “life skills” training. In the middle school here kids with special needs do the laundry in the gym. I am sorry, I send my child to school to be educated academically, not in basic household chores. If the school was not really going to “educate” my daughter well there was no doubt that I could do a better job than they could. Heck, by age five my daughter was already helping the laundry (as well as a five year old can) and other household chores, she certainly doesn't need to wash other kids clothes at school to figure it out. That I definitely can teach her at home.
I also had some great support from homeschooling families I knew that encouraged me to try it anyway. They put me in touch with the HSLDA (Homeschool Legal Defense Association) and I found that many parents were homeschooling special needs children with great success. After visiting the website NATTHAN (National Challenged Homeschoolers Association Network)I realized that homeschooling was probably the best option because it allows a child to advance in subjects they are able to do even if they can't grasp other concepts. For instance, my daughter was delayed in her speech and used a lot of signs. When children in my DS support group started preschool they made them stop using sign language and forced them to advance in their speech. Not because it was best for the child, but because the teachers would not know how to use it. In homeschooling I was able to allow my daughter to continue using a tool that was beneficial for her. Just because she couldn't say her shapes, colors and things like that did not mean she did not know them. With signing we continued to learn while other children had to stop until their speech could catch up with them. Its the same now with her math and writing skills. While her speech has greatly improved her writing is still not very good. So we found ways to work around that last year, such as getting stickers and having her place them in the appropriate place. If we needed to write how many objects there were, she would find the sticker with the right number and place it there. She could even spell her name (well the shortened version of Gess) with stickers and magnets! It was great.
So all of these things made me begin to realize that homeschooling was still a very viable option for us. When I began to really think about all the work our support group was doing and how we felt about Down Syndrome I began to realize that not homeschooling simply because my daughter had Down Syndrome was just as bad as not allowing a child to go to public school just because they had Down Syndrome. The most important element of advocacy for me is that every child should have the same opportunities as everyone else. If other children can be homeschooled, than so could my daughter! So the decision was made, Gess would be homeschooled, just like we had originally planned to do (I really don't think my husband had the doubts about it that I had anyway). I did realize that it was probably going to be more difficult and challenging than when I had originally planned to do it, but I know without a doubt that I was going to be able to handle it. Her diagnosis of Down Syndrome was not going to be an excuse for us not to try it. Sure, there may be things in life that having Down Syndrome will make it more difficult for her to do and there may even be some things that it keeps her from ever being able to do, but it certainly is not going to keep her from trying if she wants to. Seriously, you should watch this kid, she does not know the meaning of the word can't.
With our decision having been made, we joined the HSLDA when Gess was three years old and they have provided some great resources and encouraging information about others who were already successfully homeschooling their special needs child. The HSLDA assists with information about the laws in your state and they offer guidelines to make sure that if ever questioned you can provide the information to prove that your child is getting the services they need. They will also provide free legal council if anyone challenges your right to homeschool. I have to say those last three years of preschool at home were very successful. Gess was reading even before Kindergarten and her speech just seemed to really take off. She is getting even more conversational each and every day and her recent visits to hear speech therapist and ENT doctor have confirmed just that. They commented on how large her vocabulary was, the intelligibility of her speech and how great they thought it was that she was already reading.
While doubts about my own ability will always be something I consider, doubts about my desire to see my daughter learn will never be in question. One thing I think I do well is research. I am not necessarily creative on my own but I definitely know how to search out ideas that other creative minds have come up with. It was that kind of research that enabled me to find the things that worked for my daughter and helped her speech to start to really take off. No speech therapist we had seen had come up with many of these suggestions. In fact, when we were getting regular services through birth to three, I often was told to just keep doing what I was doing because Gess was doing really well. So thats what I intend to do, to keep doing what we are doing. When I find an area in which Gess struggles I spend hours researching what to do about it, brain storm ideas with my husband, ask for ideas online and with real life support groups and usually we find something that truly works. I love going to conventions and last year I was able to attend both a homeschool and Down Syndrome convention and each one offered invaluable information. I just keep thinking, it shouldn't always be this hard to find the information we need.
Thats why I am starting this blog. Maybe other parents who take the adventure of homeschooling a special needs child might find some of the ideas I have spent hours upon hours gathering from lots of different sources all on one page. Even if you do not homeschool, remember your school may not always address all of your child's needs. Many of these resources were made to help integrate them into a child's public education. Use them at home, share them with your child's teacher and do whatever it takes to help your child with that need. Don't allow them to make you feel that since you are not a professional you do not have the ability to assist your child in their education. Believe me, you are your child's greatest advocate and everyone should respect that. It's not an easy job, but it certainly is a rewarding one.