Happy May Day! Now that we have finished Autism Awareness month (not that we should ever stop promoting autism education and acceptance), May is Neurofibromatosis Awareness month. NF Type 1 is Patch’s primary diagnosis. Though most people we come across do not know what it is, this genetic disorder is actually pretty common. Affecting 1 in every 2500 to 3000 births in the United States, NF is more prevalent than muscular dystrophy, cystic fibrosis and Huntington’s combined. (texasnf.org)

NF is a neurological disorder that causes tumors to form on nerves anywhere on the body at any time. Individuals with NF often have short stature, bone malformations, learning disabilities, epilepsy, and behavioral/psychological difficulties. Its development and severity is unpredictable, and there is no cure. There are two types of neurofibromatosis, with NF 2 tumors having a greater risk of malignancy than NF 1.

NF is often suspected when an infant exhibits multiple cafe au lait spots. These simply look like birthmarks, but can be a concern if there are six or more on the skin of an infant under a year (or nine or more on a toddler or small child). They will also have freckling of the armpit or groin area. These spots, along with a family history of NF, can lead to a diagnosis by a neurologist. If there is no known family history (or if you just want medical proof), a blood test can be done to determine if your loved one has the disorder.

An NF diagnosis can be scary because of the risk of cancer and also because tumors on nerves can lead to disfigurement or even blindness or deafness. To know there is no cure or even treatment can be frustrating and disheartening. First thing to do when you receive a diagnosis is to decide up front that you will always support your child just as they are, no matter what difficulties the disorder may bring.

Next, find a good neurologist who specializes in neurofibromatosis. He or she should then be able to tell you what other medical staff you need to build your support team. For us, it has included a geneticist, ophthalmologist, cardiologist, orthopedist, social workers, and physical therapists. (Patrick sees other doctors and therapists, including sleep specialists, as well, that are more related to his autism than his NF).

Patch had yearly MRI’s until he was 6 years old and just had a follow-up at age 13 to make sure there have been no significant changes. He still requires anesthesia because he can’t be still and gets bad anxiety. We have been very fortunate that he only has a few small neurofibromas that do not cause much discomfort, but we keep a close eye on everything and just go about our lives as normally as possible. If you are facing an NF diagnosis and are not sure where to start, NF Network is a great resource (www.nfnetwork.org). As with any special need, building your village is key. I would love to hear from other NF parents.

Many of us have children with special needs and disabilities or disorders other than autism, so I promise not to monopolize the blog with just ASD. Since it’s still April, however, I’m going to try to spread autism awareness one more time first.

I would like to know your opinion on “autistic” versus “with autism.” I understand person-first language– that an individual might want to be considered “someone who has autism” rather than being characterized as “autistic.” While I understand both sides of the debate, I have spoken with some adults who actually preferred to be called “autistic,” and this is our family’s preference, as well. To me, saying “my son with autism” sounds like he has a disease, something like saying, “my son with cancer.” Saying, “my autistic son,” on the other hand, sounds more like I am just describing a characteristic to describe him, such as “my smart son” or “my curious son.” We do not see autism as a disorder so much as a trait that allows him to see the world differently. No, autism is not always pleasant or easy, but it is also not something to be cured (or that CAN be cured, unlike some celebrities will lead you to believe).

I definitely do not intend to try to speak for every autism parent. It is called Autism SPECTRUM Disorder for a reason. Behaviors and their severity can fall anywhere along a wide spectrum, and can even change within an individual from day-to-day. While Patrick is what many would consider “higher functioning” (for lack of a better term, as I know this is another one not everyone likes), I worked in A.B.A. for two years and in special education in a public school setting for a couple of years, so I know many more severely impaired children, as well, including those who are non-verbal. Some parents prefer not to use this term (“non-verbal”) either, as it implies an inability to communicate, which is not true. Many can use gestures or a few single words orally- or can even carry on profound conversations with the right communication device. An excellent example of this is Carly Fleischmann (www.carlysvoice.com). I suggest you get to know more about this extraordinary individual, as well as the now-famous Temple Grandin (www.templegrandin.com). The movie about her as portrayed by Claire Danes is a very honest picture of what many autism families face. Others with ASD have made a name for themselves in history, including Albert Einstein and Sir Isaac Newton. This just goes to show that we should never put limitations on our children with special needs.

Which leads me back to the term “high-functioning.” I use this term frequently simply because I do not know how to better describe the fact that Patch can speak and do schoolwork and care for his daily needs and will one day hold down a job. “High” and “low functioning” are not positive terms, however. Most of us would not like to be termed “high or low functioning adults” based on facts such as having a full-time job, a college degree, being married, or owning our own homes. What alternatives do you use for these terms?

Not every child with autism is a savant or genius, just as not every child with autism is non-verbal. Whatever their ability, it is perfectly fine. With caring and patient parents, teachers, and therapists (speech, occupational, and applied behavioral analysis- ABA), your child can thrive and live his or her happiest life.

Patrick wanted to introduce himself in a vlog, so here he is: https://patchworks.blog/wp-content/uploads/2019/04/20190430_151514.mp4

I asked Patch what I should write as our first topic after our introductory blog, and he replied, “About autism, of course.” It is pretty fitting, since April has been designated Autism Awareness month, so this is where we’ll start.

First of all, I must say that “Autism Awareness Month” should be changed to “Autism Acceptance Month” because the world can be well aware of our children, but until they fully accept our children and loved ones with ASD, real progress will not be made.

Having a child with autism can be quite isolating. Watching all of your friends’ neurotypical kids grow and make friends, become involved in sports, make A-honor roll, participate in sleepovers, have boyfriends and girlfriends, start driving– while we sit here hoping Patrick will learn to tie his shoes properly and make one real friend– can be painful. We have been blessed to find the Center for ASD in Crowley, Texas, which I would recommend to local families. (https://www.centerforasd.org). This is a place where Patrick feels he belongs, and where we have found the understanding and support of other parents of children with special needs. I also highly recommend Hope Center for Autism in Fort Worth (https://www.hopecenter4autism.com). Patch participated in ABA therapy here, and made impressive progress over 2 years’ time. The director and therapists here are wonderful.

As soon as you suspect autism spectrum disorder, you should reach out to an organization like these near you because I know it can feel like you are facing it all alone and that no one understands what you are going through. I hope many of you will use this blog as a forum for both finding resources for autism and for sharing your own resources you have found to be helpful.

One of the biggest difficulties with ASD is that each individual on the spectrum is so very different. The rate of diagnosis is so high now– 1 in 59 children (www.cdc.gov)– that it seems that everyone knows someone affected by it. And they all have preconceived notions of what autism looks like. After being raised with a sister diagnosed with ASD, raising a child with autism who is now 14, and working in special education and ABA therapy for several years, I have learned to ignore most of what people say and listen to each individual with autism and learn about the unique challenges they are facing and behaviors they are exhibiting.

What does autism look like in your home? In ours it is lots of fidgeting and chewing, sensitivities to smells and a very limited diet of accepted foods, poor motor skills, poor social skills and difficulty making real friends (though he is the most outgoing and welcoming kid you’ll meet), difficulty maintaining eye contact, hugs and affection only on his terms, and obsession and perseveration on his favorite topics (weather and storms, and of course video games). He is very good at being an advocate for himself and explaining to people when his autism makes him act, think, or feel a certain way, but we have to be careful that he doesn’t use his diagnosis as an excuse for every negative behavior or poor choice he makes. Do any of you find that your loved ones use their ASD as a crutch or an excuse at times?

For me, it is not the autism itself that is the most difficult part, but people’s misunderstanding of it. Patch is extremely sweet and for the most part, very well-behaved, but when he is not handling a new or different situation well or something is not going just as he feels it should, his behavior cam come off as bratty to some. So many relationships end over how to handle the child’s behaviors, when all that is needed is an open mind and more education. Please help me spread not only autism awareness, but autism education to the public.

Welcome to PatchWorks: Celebrating Diversity. I am Amanda Harner-Weeks, and this blog is for all those families and individuals who feel “different”– who struggle to find their place in society. My philosophy is “Dare to be different. Dare to be true,” which is actually a line from a Chely Wright song entitled “Heavenly Days”. I strongly urge you all to listen to the entire CD, Lifted Off the Ground, but that’s a blog for another day.

My family is not considered “normal” by many people’s standards. My wife, Elizabeth, and I are lesbian moms to a son with special needs. Patrick has neurofibromatosis (type 1), autism spectrum disorder (ASD), ADHD, and global developmental delays. He is also adopted. While we have found most people to be accepting, there are the occasional stares. We are looked at differently both for being an LGBT couple and for Patrick’s sometimes unusual behavior.

The biggest challenge has been in finding appropriate schools. I do not feel the Texas public school system can properly address Patrick’s needs, and private, Christian-based schools are often not comfortable dealing with gay parents. Special schools for autism stroke mostly cost-prohibitive for us as well as an hour’s drive away. We have been homeschooling part-time (with supplemental programs) for many years, so I hope homeschooling parents– who can often feel isolated– will find a home here as well.

Ultimately, I have come to the conclusion that I must begin my own school, primarily for children (and eventually adults) with special needs. This blog will chronicle this journey, as well as the day-to-day struggles and joys of our life.

I chose the name PatchWorks for two important reasons. First, I want to show our background in diversity, how the unique features of our family and community come together to form a metaphorical patchwork quilt.

The second reason for the name is for our son. Patrick’s nickname is Patch, and my wife and I (with help from my amazing parents too) work every day to ensure he has the best possible life and is the best person he can be. We hope you will grow to know and love this beautiful boy through the course of this blog.

We also hope that those of you whose families might be considered not quite “normal” will find comfort in hearing stories from another family who faces unique challenges. With Elizabeth, Patch, and me, you will be accepted regardless of disability, sexual orientation, race, religion…

Finally, I plan to use the PatchWorks blog to share with you resources for both the special needs community and LGBT community, as well as some on foster care and adoption and homeschooling.

I look forward to sharing my passions with you and hearing your stories. It can be particularly important for those of us who don’t quite “fit in” to build our village. So welcome again to PatchWorks.