Trauma, Addiction, and Autism: Watching “THE WISDOM OF TRAUMA” with Dr. Gabor Mate.

World Mental Health day is October 10th! I love that we have a day to think about our most important organ, our minds. Zumba decided to dedicate a whole month to this and in regards to what Zumba and Zumba instructors do for the world’s mental health, a month seems more fitting. As a parent of a child living with the label of Autism, Mental Health is a huge interest of mine.

Yesterday kicked off the first day of the “Wisdom of Trauma” movie release and 7 day event of talks and content discussing the unseen epidemic of Trauma in our society. I often talk about the connection I have seen between trauma and Autism in my own life. The generational impacts of trauma, that can dysregulate the body/mind connection have been my focus of recovery for Jace and myself. As I am watching the movie, I open a page to write, so many emotions and connections, that I just have to put them somewhere. As I type this through tears of relief, knowing that I am not alone, that we are all alone, together, that life is pain and the beauty of healing, I am empowered by the ability to share this bc, we don’t have to be alone. I hope this post brings you relief and comfort from your traumas as well. And when all else fails get to a Zumba class, preferably mine lol, and dance it out! Give your brain a break and give it a beat!

Some of my favorite points Dr. Gabor Mate makes:

  1. 2 basic human needs: Attachment and Authenticity; how the need to attach out of a sense of survival as an infant and child shapes our relationship with our authentic selves.

2. Generational Trauma: It’s not your parents fault! Letting go of blame can seem like an impossible task. It goes back, it happened to them and their parents and so on. Generational trauma dissects us into groups experiencing similar traumas ie; genocide, slavery, economic, societal, and racial expectations. For example, when my ancestors moved to America, they had societal expectations to contend with as well as racial expectations put upon them, not to mention what they experienced in their homelands. This shaped the way my ancestors raised their children, and so on until it came to me and even I was raised believing that I had to prove these stereotypes wrong, focusing far too much energy on past ideals rather than my own natural ideals.

3. Addiction- Gabor sees addiction as a response to trauma, treat the trauma not the addiction. No longer are addictions seen solely as drug or alcohol use, addiction is anything that takes us away from our loved ones, harms our health, or suppresses our authentic self. It is a response to the void left by traumatic experiences and a way to self soothe our trauma. It can be anything from a syringe to an iPhone or a pair of designer shoes or even unnecessary late nights at the office. These are considered escapist behaviors in which we engage in behaviors that allow the conditioned mind to get out of the way for a moment of temporary joy, inevitably leaving us dissatisfied and craving the next fix.

4. Perception of reality: Often times, we don’t respond to what happens we respond to our perception of what happens. We are not responding to the present moment, we are responding to the past, a past trauma, and often we are alone in this perspective which creates anger, confusion, and buries the truth and facts.

If this content interest you please click the link below to learn more about “The Wisdom of Trauma” movie and access talks from the worlds leading experts in this field of mental medicine. I do not have any affiliates with this organization nor am I being paid for this, I am just a huge fan of Dr. Gabor Mate and his work.

Click here to register for this 7 day event

“With our thoughts, we make the world.”- Buddha

Getting Help: Self Directing a Community Habilitation Worker.

As Jace heads full speed into the Teen years, I am noticing how much more he wants to be social. Unfortunately, as much as I would love to take him to every event that our special needs community offers and more inclusive activities as well, having an active two-year-old doesn’t make that the easiest task. So what is a parent of a special needs teen to do? Hire a Community Habilitation worker. Sounds easy right, not exactly. You will have to do a fair amount of paperwork and it will take anywhere from 6 months to 2 years to get finalized, depending on how diligent you are with your paperwork. But once you are approved and you match your teen with an appropriate worker it will open up a world of opportunity.

So First things first is your teen old enough to start the self-direction process? If your child is of age, 16 and older, in NY other states may differ,  you can contact your MSC (Medicaid Service Coordinator) and request to start the process. Then you will have to find and hire a self-direction broker and finally after all that you will be able to hire yourself one of these amazing people who will hopefully connect with your child in a way you could not. Some people prefer to use relatives or neighbors as their workers, people they feel comfortable handing their child over to. You can also put out an ad on indeed, linkedin, or other hiring websites. I actually like to personally recruit an individual that I think will match well with my son, after all, no one knows your children better than you. I met both of my son’s workers through chance encounters, both while I myself was “Com. Habbing” an individual other than my son. People tend to be the best version of themselves on an interview and who they really are during everyday life. So it gave me a glimpse of what it might be like for Jace to be in the community with them and I liked what I saw, positive, upbeat, calm people. May not work for you but I rely on my instincts when it comes to my children. 

Warning: Self Direction is not for everyone. If you do not like paperwork and I mean like it gives you hives and your body physically rejects it, this might not be for you unless you are up for a challenge or can hire someone to do the paperwork for you. If you are not an organized person nor desire to become more organized, this may not be for you. And lastly, if you are already overwhelmed in your personal experience of raising a special needs kid you may be better off going through already established services that can do most of the paperwork for you and help guide you through already established services. There are times that it has been overwhelming for me, but I remind myself of the freedom it has granted me in choosing classes and services that are tailored to Jace’s changing interest. 

However if you are like me, a searcher, learner, and someone constantly willing to grow as an individual to meet the needs of my children, then buckle up! Going the self direct route will make you face your own challenges in a way that put me on a path of reorganization, priority alignment, goal focus and self awareness that I had no idea I was about to embark on and am forever grateful to Jace for jump starting. 

-JRED

As always please post any questions, I do my best to get back with links to help.

Learning to Love My Teen the Way He Needs to Be Loved

By Jessica R. Duggins

We all want to be loved, adults and children a like. And when we are loved, when our needs are met, we feel supported, confident, and empowered and all is right in the world. So how does this help when parenting? It reminds us to parent with love first, and responsibility second. Once we are fluent with the way our children respond to love, once we are in tuned with their needs and motivators, we can gain their trust and in turn guide them with cooperation, respect and love to healthy development.

I’m so excited to share one of my favorite visual tools that I use to remind myself of this focus. A simple chart I came across while feeling frustrated in another relationship of importance, my marriage. I found myself feeling resentful, exhausted, over entitled, and unfulfilled. I was in a rut and I put myself there by holding my most loved ones to expectations unbeknownst to them. My expectations. The expectation that they will love me as I expect them too and if they don’t then I will self destruct and hold them all responsible. That’s crazy, right? But all to common, maybe not so dramatic but common. And we deal with it, we live life banging our heads against a padded wall going maybe someday they’ll get it, if I beat it in their heads enough, maybe they will care about the things I care about at my intensity. Why would I really want that anyway? I love these people for who they are and what makes them unique to my heart.

What if instead we empathized, one of my favorite words when it comes to parenting. What makes my kiddo happy, what puts a smile on his face, what lifts his heart? Not mine, not what makes me feel safe and cozy and cared for but from his perspective.

I am a physical lover, I love hugs and cuddles, and spooning, and nuzzles.  And although I may enjoy that and maybe my two year old does also but my teen on the spectrum not so much. Physical contact makes him visibly uncomfortable. That’s not to say he doesn’t return it, but that’s because he knows its my love language, it makes my heart rise when he hugs me on his own, my smile cracks from ear to ear when he kisses me on his own, and he knows it, he’s so smart.

So how do you figure out how your child loves, when they have challenges communicating simple daily needs, or any words at all? Observe and learn. try some different approaches. The chart below is printed out over my computer because that is the place I tend to get most frustrated with my children because I am not trying to focus on them but myself.

5 languages of love- children

This moms site has some great printbles to get you started for free, after a simple email subscription, and I do suggest you print it out and put it somewhere your kids seem to get your goat most, maybe the bathroom, or kitchen. The visual concrete reference will help to create this process of rethinking your approach when parenting and hopefully ease frustration. I did not invent the Five Languages of love, no, just lucky enough to stumble upon Dr. Gary Chapman’s ideas in my research to better my communication and understanding skills in my nuclear family.

True love, unconditional love, is not easy, it does not just happen. You have to do the work and commit to change no matter how uncomfortable it may feel in the beginning. You have to make the effort to see another way of life, of love. As with all new habits, it has to be habitual for results, but when we falter we have to be kind enough to forgive ourselves and start over. Good luck guys, please comment below and share if this chart helped you out or even if  it didn’t.

-JRED

Autism- Finding Our Place in Society

J running at the Special Olympics this year. Photo courtesy of Ken Wickiser
J running at the Special Olympics this year. Photo courtesy of Ken Wickiser

A challenge almost everyone faces in life is finding ones place in society. Some of us find it with little effort and others struggle to the point of depression and even suicide. The same is true in the Autism community. However I feel as a parent it is my shared responsibility to find a community for J to be able to find his place. However it’s not just a struggle for him to find his place but mine. As an adult I had already felt that I found my place in society, but my community has changed since J’s diagnosis and thus so has my place. And there are times when it is hard to feel as though I belong somewhere. There are times when fear of J’s capabilities hinder me from finding our place.

For example, one of my favorite things in our life is J’s Special Olympics team. It was our first year and as terrifying as it was to have him join the team it was even more rewarding for J and myself. We found a great community, great kids, great parents and a feeling of acceptance that I hadn’t felt in society since J was diagnosed. However Autism is unique and we all have our own challenges with our kids, but we empathize and understand our shortcomings in a non judgmental way.

I encourage anyone who is having trouble finding a spot in your community to look into

Me, J and Big J at the end off year sports banquet for J's team. Photo courtesy of Stacey Orzell
Me, J and Big J at the end off year sports banquet for J’s team. Photo courtesy of Stacey Orzell

your local Special Olympics organization or other sports or hobbies that interest your child. And if there is no such thing in your area I encourage you to start one even if only two people show up, you gotta start somewhere. My son does not have the social skills some of his team mates have but I can see them growing because of this experience as well as his confidence as he sees there is a place for him in society.

I have also benefited from my interactions with other parents who are going through similar challenges. Not only can we relate but we offer suggestions and references, forming our own network of support.

Would love to hear back from any parents involved in your community, how it’s helped or hasn’t.  If you need help finding something comment me and I will try to help you find something in your area.

-JRED

Spreading Awareness of the World of Autism- Applied Behavioral Analysis or ABA

If you’re a parent of a child with Autism you have probably heard the term ABA, an acronym for Applied Behavioral Analysis. If you’ve wondered exactly what therapies are available to help people with Autism, this is one of them. It is a form of therapy that is highly repetitive and firmly structured something most of our kids respond well to, but my wonder is how much comprehension is being communicated through these flash card download sessions? ABA has been considered a very successful form of therapy for children on the spectrum and unlike many forms of therapy for Autism it is scientifically supported.

With the documentation of its success I like most parents, wanted to see my son in a program that offered ABA. When my son was 3 this was not easy to find. I was warned it was very intense and I may not want my child involved in such a severe form of therapy. After hearing that I imagined how intense it could be, was he strapped to a chair and forced to look at images? Was medication involved? What were the adverse reactions if any? I began to imagine ABA as a form of Aversion Therapy similar to the kind Alex from Stanley Kubrick’s A Clockwork Orange receives.

Although ABA is intense and repetitive it is not as torturous as it was depicted to me. I think I was discouraged because of the lack of trained specialist and programs available at that time. Now, ten years later, every special education program claims to use the ABA method. They say it is “built into” the curriculum. As someone who used my own version of this method during our home school sessions, I can’t see how it could be. It is a method done one on one with minimal distraction. The information is delivered at a rapid, repetitive pace. I found the ABA method most useful during math drills as repetition with mathematics seems to work better than a slow research and discovery process, used for other subjects that require more comprehension than memorization like reading.

I noticed that J was memorizing these math equations but very rarely comprehending the results such as the value or quantity, and he couldn’t discuss it outside of the ABA sessions, which made me wonder is ABA the most effective method or is it a way to cram information into our kids brains so they can perform like parakeets? What do you think? Please respond in the comment area with your own experiences with ABA, would love to hear from Board Certified therapist on this as well.

-JRED

Website about ABA

Applied Behavior Analysis

“Applied Behavior Analysis is the process of systematically applying interventions based upon the principles of learning theory to improve socially significant behaviors to a meaningful degree, and to demonstrate that the interventions employed are responsible for the improvement in behavior“ -As defined by Baer,Wolf, & Risley.

Spreading Awareness of the World of Autism- What is Stimming?

Ever crack your knuckles or your neck? Maybe you rub your hands when your thinking or nervous. We do these things to self soothe and feel more comfortable. Some times we do it without even noticing because it just feels good. Well that’s basically the purpose of stimming in a person living with Autism. Unlike most people who have self stimulating habits, someone on the spectrum may have no control over this. Some common stimms I’ve seen in my son J are humming, hand clapping, jumping, rocking and visual/audio stimulants. Here are some of his favorite stimm videos, he will watch these over an over, rewinding and fast forwarding to achieve the visual or audio stimulation he enjoys:

It’s a form of self soothing but can be unproductive, socially inappropriate and further detaches J from us so I try to limit this kind of stimm with redirection. I even point out to him that he is stimming so he can become aware of this behavior and eventually redirect himself toward something more enriching and socially engaging. I will usually suggest a new activity, for example if he is stimming on YouTube I will suggest going to a more interactive site like PBS Kids so we can play a game together. If he is humming or rocking while we are out I will try to apply deep pressure to his shoulders and arms, here’s an example of what I mean:

Stimming- (as defined by North Shore Pediatric Therapy ) – Stereotypy or self-stimulatory behavior refers to repetitive body movements or repetitive movement of objects. These movements are used solely to stimulate one’s own senses. This behavior is common in many individuals with developmental disabilities; it appears to be most common in children and adults with autism. It is important to note that not all self-injurious behaviors are considered to be self- stimulatory. Self-injurious behavior can also be communicative.

If you have any stimming stories or recommendations please share below and share to spread the awareness of why people with Autism stimm. Thanks.

-JRED

6 Activities for Grandparents To Do With Their Grandchild Who Lives With Autism.

Don't Forget To Have Fun!
Don’t Forget To Have Fun!

J is one of 16 grandchildren and the only one on the spectrum. My nieces and nephews thankfully all know how to engage, ask questions and speak their minds like most kids. I think sometimes when it comes to J most people forget that they have to initiate the conversation and interaction when trying to create a bond. Luckily most people are very open-minded to any suggestions toward engaging with J, especially my parents. They are always looking for ways to include him when he comes to visit. I’ve learned one of the best ways to bond with J is to engage in a learning activity of some sort. He loves when I teach him things like cooking, a craft, reading, even gardening. Here are 6 activities grandparents or anyone looking to bond with a child on the spectrum can try.

1. Reading– When J goes with his grandparents for the night I like to stop by the library and pick up a few books to send him with something new so he’s not expecting them to read it the way I do. I pick out books that are at his reading level so he can read to them as well. When we read together I like to go page for page with J. I give him lots of time and assist by hinting the sounds of words that are tricky for him. Sometimes he gets so confident he will take over and read the whole book to me. Before he could read as well we spent more time discussing the pictures. I did most of the talking but he was certainly listening, learning and enjoying the shared moment.

2. Cleaning- Although it is not J’s favorite thing to do he does like learning a new skill, being helpful and feeling accomplished when its done. When I want J to help out by cleaning I ask him to do simple things like carry the clothes from the dryer to my bed, and take the dishes out of the dishwasher. He also helps make the beds, and fold his laundry. One of his favorite things is to help fold sheets and blankets because I give him a kiss when our corners meet. Cleaning can be a great opportunity to talk and explain simple tasks that are part of life. I wouldn’t recommend having them help with things that you like a specific or intricate way unless you don’t mind doing it again afterward. This could become frustrating for the both of you if the task is too difficult for the child.  Always keep the child’s capabilities in mind not their age.

3. Gardening and Yard Work- When I am gardening I like to give J a little project of his own I will have him dig holes for my seeds or scoop up dirt to fill the holes. I always make sure he is wearing clothes I don’t mind getting trashed as well. His favorite thing is to water everything. TIP- if letting your assistant gardener water your plants, fill the can with just enough water so they don’t over water. Don’t be afraid to enlist older stronger kids to push around a wheel barrel or rake up some leaves. With simple instruction our kids can be pretty helpful. Don’t forget to stand back and admire the work you have accomplished together and always show your pride and appreciation for their help.

4. Cooking and Meal Preparation- J is very curious about what goes on in the kitchen mainly because he is a picky eater and wants to know just how and what is going into his food. I saw this as a great opportunity to get him involved. He enjoys mixing, measuring and pouring. He also likes when I tell him about all my ingredients and when I explain what I am doing. His favorite recipes are dough based, I always make him a personal dough ball so he can roll it around and squish it to his liking for a while. This is a great opportunity to teach sequence and time,  for example, “first we do ABC, then we do LMNOP, after TUV amount of time we have XYZ.” If you want to make it a bit easier you can write out simple steps ahead of time to create a visual. Have them refer back to it for each step. Be sure to work in an area you don’t mind getting messy or prep it for the potential mess. Enlisting them for clean up is also a great idea but be sure to keep their capabilities in mind, for example J is good at taking things to the sink, rinsing them off and loading the dishwasher, not so great at wiping the table off without flinging most of it to the ground.  Setting the table is also an easy way to make your kitchen assistant feel helpful.

5. Pass Down an Interest or Hobby- whether your handy with wood or like to knit sharing a personal hobby can be rewarding for both grandparent and child on the spectrum. Try to share a simpler aspect of the hobby first for example if you are good with carpentry, teach them to hammer a nail before trying to build something like a birdhouse. Use some scrap wood so they can practice it a few times. Maybe bird watching is your hobby, most kids like using binoculars, make a game of it by seeing how many birds they can find. Maybe photography is your hobby, start out simple by teaching them to pick a subject, maybe a favorite toy, and take a picture of it.

6. Prayer- I recently started teaching my son about prayer and the belief in God. I have taken him to church when no one is there but have not yet worked up to a full mass. When I was a kid my grandmother taught me prayers and took me to church all the time. Our faith is still something we share to this day.

Whatever activity you decide remember to always keep the child’s abilities in mind, they maybe thirteen but also maybe unable to cut with a knife. Don’t ask them if they want to do it, invite them to do it with you. Try to make each activity fun and exciting even if it seems simple and mundane to you. Explain the importance behind it. Keep instructions simple. Always be encouraging but allow them to make mistakes and when correcting BE PATIENT AND KIND. Share your own stories about how you learned this skill or why you enjoy said hobby, they may not be able to communicate much back but they are listening.

Let me know if this post helps or share your own stories and ideas for activities you have found to be enjoyable below.  Thanks.

-JRED

Getting Outside with Autism

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J and Grandma @ Times Square, NYC

J had this project over spring break that was clearly to get us parents out of the house and more engaged with our kids. I never mind assignments like this, anymore, because it’s something I kind of assign to myself. It’s not always easy to go out with J but I always feel better after I brave the unknown and conquer. There was a time during my son’s diagnosis when I did not want to leave the house. It was right around the time when his tantrums were becoming out of control, around nine years old. He was no longer small enough for society to disregard and he wasn’t obviously a special needs kid since his physical development was above percentile. Which meant I got a lot of dirty looks and judging eye rolls from strangers who all too quickly summed us up as a young mother and her ill-behaved brat. I felt so much pressure and stress every time we walked out the house. What if something set him off? What if I couldn’t control him? What if he hurt himself or others, or me?

After several very intense, exhausting tantrums in public, I was done. I imagined people thinking “why doesn’t she just keep him home?” So I did. I did all my errands during the day while J was at school so I wouldn’t have to venture out with him. I figured this was just the way my life was going to have to be now. Luckily I was working part-time when all this started happening so I had some weekdays off to take care of everything without having to drag J along with me. Although life was less stressful for me I realized his tantrums were becoming worse. I was now having difficulties at family gatherings and little things like neighborhood walks. He began to show signs of his now infamous sensory trigger, young kids and their loud high pitched yells.

I hated the path we were going down, he was only nine, I couldn’t really keep him inside forever, he wasn’t Bruce Wayne living in a mansion with all he needed and I couldn’t afford an Alfred to look after him. I wasn’t doing him any favors. He had to learn how to function in society. What would he do as a an adult when he needed to eat, or go to work, or visit a friend? I had to give him these skills no matter how terrifying the task seemed.

I went through a long process to get to the place we are currently at and although it is not perfect , we still have some difficulties, I have the tools to handle most situations. It’s what I imagine being on the bomb squad must be like, your still terrified that this explosive device will go off and obliterate you and everything in a 10 mile radius but the knowledge of how to handle it gives the feeling of control that allows for the confidence to finish the job successfully. Once I knew the triggers that set off J, I knew how to strategize for them. My confidence and preparedness not only calmed me but it made J less anxious as well. He could see I was going to work with him, we were going to get through this together as a team. I understood he needed my help and that was a comforting thing for him.

Anytime we go into “uncharted territory” this is how I prepare:

  1. I explain to J simply WHERE we are going, WHAT we will be doing, WHO will be there, and WHEN we are coming home, if necessary and time allows, I will write it out for him on a dry erase board the night before and add it to his calendar ahead of time.
  2. Noise cancelling headphones that attach to his iPad, fully charged and loaded up with all his favorite apps, songs, and videos so he can block out sounds that cause him distress.
  3. A good night sleep so he has the energy to handle his sensory challenges better.
  4. Back up tech like an iPod or cell phone with some songs or games on it and extra batteries for his headphones.
  5. Chewing gum. In the past I would also bring clay dough, or Theraputty to help relax him. Theraputty Link
  6. Keep the sugar intake down and give him lots of water.
  7. Research the place for my own knowledge where it is, what it looks like, what we can expect.
  8. Know and respect his limits, if it wasn’t part of the original plan don’t push it.
  9. Ignore judgmental people, easier said than done but self explanatory

When I can do all these things J usually keeps calm and even enjoys himself most of the time. Planning is a big part of our lives as you may have noticed from previous blogs. A little planning goes a long way for J and for my confidence as well. What are some strategies you have adapted to help with your special needs child’s triggers? If you have any questions or just want to share your success stories on getting outside with Autism please comment below.

-JRED

Things I wish I knew about Autism…

Dymphna's Children 2I had my son early in life and although I had a natural knack for connecting with children, I just did not have the tools to deal with what lie ahead. Autism challenged every approach to parenting I thought I would have as a tool. This became very apparent around the time J turned three.

I couldn’t reason with J when he was having a meltdown nor intimidate him to stop with sternness or the threat of a spanking. It was so frustrating, watching my boy scream and cry until blood vessels broke under his skin, giving the appearance of red freckles. I would try everything, or at least what seemed like everything to me, holding him, soothing him, restraining him with a bear hug in the hopes it would tire him out and keep him from hurting himself, singing to him, bribing him and a ton of other things that were temporary fixes.  I had never dealt with a child I couldn’t calm. It broke my heart, I felt pain that there was no comfort for, I felt helpless and overwhelmed and since I was alone with him most of the time I would dwell on it and crumble. I was not acquainted with feeling this powerless and my sadness quickly turned to frustration, resentment, and anger. How could my little boy want to cause me so much pain, worry and grief? I was only trying to do right by him, care for him, love him, guide him, and he was making my life so difficult. Why did this happen to me, what did I ever do to deserve this? I didn’t want to be a parent that spanked but it seemed he was leaving me no choice. Well, spankings did not work either, in fact they made things drastically worse.

Here’s What I Did Wrong- Beside spanking, yelling and losing my temper, I made it all about me, what I was feeling, how this was all affecting me, how my life wasn’t what I wanted it to be. I was still young minded, selfish and self involved. I had not yet learned the sacrifice and selflessness that unconditional love demands. My son had no one else but me to help him and I was falling apart right before his eyes. I wasted too much time dwelling on  my situation, that I missed opportunities to gain control of things. I let my frustration and anger create hopelessness and distance between us. That’s not to say I didn’t love him, I smothered him with love, but there was no connection, not like there is now. Yes what I was going through was not fair, and it was a lot to process at twenty-two along with being a new parent and all the other things going on in my life, a failing relationship with J’s father, moving back in with my parents, and a blossoming career put on hold.

What I Would Do Different-

  • The first thing I would tell young JRED to do, stop dwelling, at least while she is in front of J. It’s very counter productive at a time when our attention should be on teaching J through play. We should be observing and trying to understand him, what sets him off, how to avoid or limit this. Children believe we are super heroes and at some point in life they may realize we are not, but hopefully that’s at a point in their lives where they are confident and educated enough to understand why. We have to give them the feeling that life is safe and stable and like we can keep them protected even if it is an illusion we are creating for them. That illusion is a gift, almost like taking them to Disney World. You know it’s not realistic but you want them to believe in magic, to be a child. The reality of life will naturally find them, no need to bombard their childhood with adult concerns they do not have the capacity to understand.
  • I would tell her to focus on letter sounds and words with J. Simplify the reading material so that he can mimic sounds and words. Work with flash cards and teach through play, tickling, and games. Don’t yell just correct patiently, simply, without visible frustration. Show pride painted across our face when he does good. Minimize the reaction when he does wrong.
  • I would tell her to deal with her feelings in a healthy manner, away from J. She is in mourning, mourning the loss of an ideal that she created in her mind long before J was even born. Those feelings definitely need to be addressed to make sense of them or at least get them under control.
  • I would tell her to talk to people she trusted after J was asleep or away from the conversation. I would tell her to seek out professionals and other parents who have gone through this that can shed some light and much needed advice.
  • I would tell her to exercise and make time for herself to clear her mind even if it was just an hour a day to blow off some steam so it wouldn’t be taken out on J.
  • I would tell her to write, keep a journal and write anything she felt, poems, diary entries, songs, drawings, anything that helped her process her feelings to the point of some clarity.
  • I would tell her to have faith, and be strong, and to pray. To see this as an opportunity, to find the purpose in the detour life put her on, and if she can’t find the purpose, create one.
  • I would tell her to cherish this time, Autism or not J will never be this small again. Enjoy watching him discover the world even if it’s not at a pace society expects a child his age to be, go with it, follow his lead and be a witness to his life.
  • Lastly I would tell her to let go of what she thinks her life should look like to please others or because of what she was taught. I would tell her to let go of the shame of returning to her parents house for help and appreciate the fact that she even has that option. I would tell her not to worry about being a single mom for fear of what others would think of her or her child, a happy single mother is healthier and stronger than a miserable married one. I would tell her not to worry about her career and money, they are not going anywhere but J’s childhood is. I would tell her not to worry about making everyone happy. I would tell her that she can not control others and how they feel only herself, that she is the only person responsible for her happiness, not a man, nor society.

Then  I would hug her hard and tell her she will get through this, people have gone through worse.

-JRED

Home Schooling with Autism- To Do List- 1.Get Organized!

Like schedules and routine, organization keeps stress down and my mind clear. Having a special needs child and being organized seems next to impossible, but it makes life much easier. Not just structurally, but mentally. It is said that our homes and spaces reflect our minds, and one look in my downstairs closet would show you there’s much I put away and forget about. That’s why it is so important to set aside time to organize my home and my mind. This became quite clear during home school. Thankfully To-Do-List made life much more Do-Able.

thingstodo

Once dinner was done and J was down for the count, I was so tired that I wouldn’t even want to talk anymore. I spent the day talking slow which is challenging for me as I speak a mile a minute. Much energy was also spent on being extremely patient, repeating words again and again, and exaggerating enunciation  that by nine o’ clock I was sick of my own voice. Not to mention all the other things I had to do once home school hours ended, I was spent. I would have headaches and my voice would be so hoarse no amount of tea and honey would soothe it. It seemed like the only down time was bedtime.  I would tell my husband, Big J, “just talk, you do the talking, tell me all about your day” which was surprising to him since getting me to shut up is usually the challenge. Midway through his recollection of the day, my exhaustion would conquer me and I’d knock out.

I realized I had to do something to get ahead of this rapid pace I was setting for myself during the day. I worked in midtown Manhattan for years before turning my total attention to J, so I was accustomed to a fast pace, busy life, but the work day ended at some point. I left the office and it’s troubles behind until the next day. I had to come up with some life hacks for home schooling. I had to get organized. So I asked my mom to take J for the day. I spent the day balancing my life by creating realistic goals and limits on work so that I could spend time off from being J’s teacher and more time being mom, wife, and me.

I sat down with a pen, and paper and wrote out two list. One was titled “Things to do for Me”. The second list was ” Things to do for J”. Writing down all the things looming in my mind made it much less daunting. The panicked feeling of “oh! I forgot all about that” was gone, because each task was accounted for on my trusty list. It may sound silly and simple but they help and I always feel such a sense of accomplishment when I can cross something off the list “and sigh of relief, its done”.  I could also see options for what could be incorporated into the home school schedule, like my workout during PE, visiting my family as a social activity, dropping off donations to the church, recycling, paying and mailing out bills could all be great living skills opportunities for J. I just had to get creative in my thinking and brave in my planning. Outings were and sometimes still can be a challenge. I’ll talk more about how I handled that in a later post.

So with my mind mentally organized I didn’t feel so overwhelmed, I knew I was going to have time to watch a movie with Big J after little J went to sleep because I didn’t have to run to the post office or workout, or grocery shop. I already did that during the day with J. I even had time put aside to write and do research about Autism after we ate dinner. I asked Big J to give me an hour of alone time while he spent some quality “guy time” with little J. Yes! I even learned how to ask for help and how to delegate. I didn’t need to do it all on my own as I had myself believe.

I typed up about two weeks worth of lesson plans. I got everything ready for them like supplies, worksheets, bookmarked websites, and anything that I would normally find myself scrambling to do with the 15 minute breaks I had between each lesson. Our breaks were short to keep J on task, any longer and he would lose interest, get into mischief,  and be much more difficult to refocus. The faster I could move through subjects the better. I could now sit down next to him during a break and have a cook of tea and recover before the next lesson. This planning made me feel empowered and inspired, even if I was only cutting up eggs for the Green Eggs and Ham counting game we were going to play in math.

I imagine this is what most teachers do daily, prepare as much as possible ahead of time. I never studied to be a teacher so my teaching skills stemmed from playing school when I was a child and being a student myself. I always did like being the teacher when we played school, but we were not “playing school” anymore, this was J’s future and this was hard, challenging work. I regard good teachers as great strategist now.

Being organized helped me add more elements of fun to the day. I was more care free and able to be in the moment because I wasn’t worried about preparing for the next moment, it was already prepared for. There is so much in life that can not  be anticipated, but with a good amount of organization and planning the unexpected becomes manageable.

Feeling overwhelmed comes with the territory of raising a special needs child and children in general. If you feel like you are drowning or just can’t seem to get it all done try making list to gain mental organization. Start with the time sensitive priorities at the top. Understand that you may not check everything off in one day and allow yourself enough time to properly tend to each. I like to give myself due dates especially for bills or tasks that have deadlines. If this feels like it adds too much pressure don’t write deadlines just what needs to get done. See what you can ask others to help out with. Then execute! Make it your mission to get at least two things or even one done a day. Be realistic about how much time each task will take to do properly and then make that time. Before you know it that list will get smaller and smaller. I hope this helps, please let me know if writing lists helps you out or if you have any questions please don’t hesitate to comment.

Here is a link to a helpful article about the many options of To-Do templates you can use with your device if you like to be a little more tech savvy than a pen and paper allow: Finding the best to do list app with a to do list template

TO DO LIST Template provided by Microsoft Office Templates

-JRED

 

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