Matthew's Puzzle - Autism Recovery, Gluten Free, Green Living Mom Blog

 There is a book out there called Ten Things Every Child With Autism Wished You Knew! But this is my list, as the mom of a child with autism, for what I wished you knew.

1. I don’t know one parent of a child with autism that went out seeking this diagnosis. Not one of us wanted these “free” services. We would gladly turn in all our special education, physical therapy, occupational therapy, speech therapy, applied behavioral analysis and respite care hours we have accumulated to have a normally developing child. It is insensitive of anyone to think we would seek out this diagnosis to freeload off the school system. Our children will carry this label throughout their school career. They will be opened to teasing and brutality. They will struggle with simply activities you and your child take for granted. Just because some news outlet tells you that autism is the diagnosis du jour do not assume this to be true, because as a parent of a child with autism I pray daily that this disorder will be lifted from my son and that we will be left to deal with those mundane daily items everyone else finds so daunting.

2. If you haven’t done the research don’t presume to understand the disorder. Autism is extremely complex and as our children age, grow and develop, so does the disorder. It is not like diabetes where it has one set of problems that remain relatively consistent throughout the person’s life. Instead it is multifaceted, has a full spectrum of affliction, comes with many co-morbid diseases and changes as the child changes. We have had autism in our lives for 6 years. During that time I have read and researched quite a bit, and yet there are many aspects of autism which I don’t understand. If your knowledge of autism comes from a one hour TV program do not think you understand the disease better than we do. 

3. Keeping number 2. in mind, don’t presume to know more than the parents. I’m sure you are well meaning, even if you come across as harsh and uncaring, but we the parents really, truly know best. Especially those of us who have studied the different problems children with autism face. They have sensory processing disorder, executive function problems and issues with Theory of Mind. And if these words are not commonplace to you, then before you determine just how poorly we control our children you should Google those terms and familiarize yourself with what struggles our children face daily. Because their bodies and minds are bombarded with sensations they are not equipped to handle. They are not misbehaving, obstinate or cruel, they have autism.

4. Our children deserve the love and respect given to every other person out there. They are human beings. And as we have seen in our own family, these children are alive inside what we once thought was their own world. And they are watching, learning and remembering. Do not assume because they don’t speak, or they won’t look you in the eye, that they are not present, that you can dismiss them and assume they are furniture in the room. A person with autism has the capability to understand and process all that you put before them, so make sure what you put before them is what you want them to know about you. Treat them with dignity and respect and you will be surprised by the sheer capacity of their minds.

5. The stress of autism is overwhelming at times. It is a constant current that run through every aspect of our lives. Even as our children improve we have no idea of what the future holds. In our home we must plan two lives for Matthew, the one the doctors tell us he will have and the one we hope he will achieve. One requires provisions for a person who can not support them self while the other requires planning for college and other endeavors. We must assume both.  We want every normal thing for Matthew, but we must work to ensure that he can do the simple tasks others take for granted. It may seem trivial to you, or simple, yet you don’t have the responsibility we have. So before you judge, step into our shoes, walk around, look at all the small details you may not notice from the outside.

6. Yes they may tantrum or melt down, but realize that typically their bodies and minds are overstimulated by what our bodies find to be normal, dismissible input. For whatever reason, their bodies can not process the sensory stimulation it is constantly bombarded with and often they lash out or melt down due to these inputs you and I would not think twice of. An example would be the flickering of florescent lights. A normally operating fluorescent light has a line flicker which is not perceptible to average humans, but it is noted that those with autism can notice and become disturbed by such a flicker. Their bodies perceive and process this input differently. 

This certainly is not an exhaustive list, but it is a list of things I wish you knew.

Stay well.

 If you didn’t know today is Purple Friday in all of Maryland. The Raven’s will be playing the New England Patriots in Foxborough this weekend and everybody in Maryland is excited. They have painted Ravens heads all over town, our local library and grocery store are even sporting them. The grocery stores have gone so crazy they even installed one of those humongous blowup football players normally used as lawn displays, right on top of their salad bar.

The schools encourage the children to wear their purple (Raven colors are purple, black and gold) to school and you can see the staff durning drop off all decked out in their Ravens finest.

Today Matthew wore his Ray Rice shirt to school. I was hoping to have him wear a long sleeved shirt underneath, but no way. “Mom, I want to be like all my friends. They don’t wear shirts underneath.” Fine. Although I’m not quite sure I believe him. But what the heck, if he is aware and interested in what his friends think, I’m all for it. 

So are you wearing your Raven’s Purple today?

Stay Well.

Our middle son, Nico, suggested the name Mook Muffins. Why? Who knows. He liked the name. I was looking for other breakfast options for the boys and was having a very difficult time finding something I felt good about giving them. They LOVE GF pancakes but I just can’t feed them that every single morning. Plus, it is a lot of refined carbs. Not to say Mook Muffins aren’t, because they are, but I’m still trying. I bought a package of King Arthur’s Gluten Free Muffin Mix at our local organic market, MOM’s.

Instead of simply following the directions, because you all know I can’t do that, I decided to try adding some nutrition to the prepackaged mix. The mix calls for 3 eggs, I opted for 4, figuring I would be adding some additional protein to the muffins. I also opted to add yogurt instead of milk, and a good 1/2 cup of puréed butternut squash. You could also use pumpkin or cooked sweet potato. I’ve done all of them with great results. I also added a little pumpkin pie spice from Frontier, and some chopped pecans. I use my kitchen shears, put the pecans in a cups and simply “snip” them into smaller pieces. Then, to give in to the boys, I add some good quality dark chocolate. The additional liquids means a longer bake time, so watch your muffins closely. I also always use unbleached cupcake lines and a great pampered chef stoneware muffin pan. This way there is no aluminum leeching into the muffins.

You could add other items depending on your child’s likes and dislikes. I’ve done grated carrots and dried fruits such as raisins or prunes, I’ve added chia or flax seeds – but I don’t know if baking changes any of their nutritional qualities. We never use processed oils, but choose either butter or coconut oil for our baked goods. They are healthier fats according to the Weston A. Price Foundation, which is a nutritional group that suggests traditional foods instead of processed items.

Of course, as I said before, these muffins aren’t perfect since they do contain refined flours, but the kids love them. I know I have upped the nutritional content to some degree and they are served with more protein and some fruit. This morning the kids even drank some of my homemade kombucha. We aren’t perfect eaters, yet, but it is my goal to improve each and every day. I hope you find this to be a useful method of adding nutrition to foods. You can sneak more veggies and fruit, fiber or protein into the foods you will already be eating. Of couse this should never be your families primary way of getting their fruits and veggies, but why not let it supplement the way you already eat and give them a little more nutritious punch with every bite?

Stay Well