INsider INfomation

INsider INformation is a place to share real world experiences and ideas and share support.

THE Diagnosis

THE Diagnosis: What now?

The Diagnosis: What happens next?

Mary Alice

You sat in a room for what seems like an eternity after you waited on a waiting list for over a year or more. You waited patiently while being told repeatedly there is something wrong with your child. How can this be happening? The pregnancy was fine, the doctor said everything was fine. The baby was just early and spent time in the NICU (Neonatal Intensive Care Unit) or you had a normal pregnancy or you had eclampsia, it doesn’t matter. Everyone said that it was all fine.

But when it came time to start meeting milestones, everything was not fine. Does your child roll over for “tummy time”, make sounds, reach for things, mimic your facial expressions?

The questions seem to come more quickly than you can think. No matter the timing, it is always hard. Are they showing interest in the potty, how many foods will they eat, what is their favorite thing to do, how often do they fall?

Why is all of this important? You came to the doctor to see what was happening and now feel like you are on trial. What did I do wrong? I wanted to try to get them to eat a vegetable, but they don’t sleep and I am so tired and I just give them the peanut butter sandwich every day because I need to rest. I always think I can do more tomorrow and it feels like it is never enough.

I am here to tell you, it will be okay and it does not feel like that right now. You will find a way and it will require a heroic level dedication. However, you are the one to do it.

First, let this wave of emotion hit you like the tsunami it feels like. Let it come and wade out of it. You are mourning the loss of a neurotypical child. That is expected. No one is going to say this to you and no one is going say it is okay. I am here to tell you it is okay. This is not what you signed up for and this is what happened. It is okay to feel this way, it is okay to be sad and angry and cry in the closet for 38 seconds while you eat a piece chocolate and then put on your happy face for your family.

Your supporters will say unhelpful things like, “They will grow out of it,” or “Are you sure they are right?” Others will say it is a lack of discipline or “we didn’t have autism when I was a kid”. (Side note: it was there, children effected were seen as “a problem” or “difficult”. My heart cries for the children that were not treated in a way that all children deserve.) Let them speak, but DO NOT hear them. You are going to step out of their world. You don’t belong there anymore. You are going to a world that is far superior to the one you are in now.

You are going to a world that is concrete. All abstract things are not needed right now. Say exactly what you mean. Use your words with direct intent. You are going into a world that requires repetition. Lining up toy cars, listening to the same song for 147 hours in a row, watching the same movie or video or commercial thousands of times. Let it come.

You are going to a world that does not tolerate loud noises and crowds and variance. The key to everything is sameness. So they may not eat a vegetable (not the same every time and therefore unacceptable). Fed is best. Hold on and stay strong. They may not be able to speak to you verbally, they may not be able to report pain, they may not be able to communicate effectively at all. You are the safe place. You are the holder of this child’s word. Let it come.

You cannot do it all. You cannot fix everything at once and trying will only hurt you. Take a breath. Take a moment and grieve this loss, this change. Let it come out in tears or screams, know that you are not alone. You did nothing wrong. This happened to you. Pick one or two things to work on at a time. Let it come.

Now, pick yourself up. Find it. Find it where you need to find the courage to be the voice for a child(ren) that does not have one. Find the fire that laid dormant inside you for all these years and call upon it. You will need it. This is not going to be easy. I can promise you, it will be WORTH it.

One Liners to Protect Your Peace

One Liners To Protect Peace

One Liners To Protect Your Peace

Mary Alice

Many times, when I go out with my special needs children, I am greeted with a multitude of unsolicited advice. Some well-meaning and some just hatefully ignorant by people that cannot or will not understand that my children have needs that are greater than their own. That said, I spent years fighting them. Fighting the ones that told me, “Those kids should not have tablets at the table,” not noticing that I was sitting there crying and trying to just eat my food in peace. The ones that said, “What’s wrong with that kid?” and I am struggling to try to explain the complexities of autism to someone who was not going to try to understand. The list goes on: You need Jesus, this is a lack of discipline, you have your hands full, that kid is nasty, my nephew is autistic and he doesn’t do that, have you tried putting cheerios in the potty, your kids are bothering me, I didn’t pay to listen to your kids…. the list is endless.

Some of the interactions have included physical assault. A male (I would not use the term man) in a movie theater punching me at the movie theater was the last physical encounter I had before I started improving how I handle the public when I take my children out into the world. I know that most of my peers elect to stay home and not deal with this drama. It is a disservice to these children because they deserve to enjoy life just as much as the rest of us and other people need to learn to accommodate neurodiversity. They cannot learn if we do not teach them and none of us know anything, but as a society we could all learn to be patient and kind. At the very least we can mind our business.

I started selecting only “special needs” or “special abilities” nights for events and social opportunities. Unfortunately, these are usually a subpar experience. For example, a Christmas light show at 4pm for special needs only that occurs one time per season and on a Sunday. Sounds great! However, you cannot see the lights because it is daytime and you cannot do any of the special activities (food trucks, other attractions, etc) because they are not open yet. Most of them offer a limited-service event and I don’t want to limit them in any way. I am trying to raise good human beings. So, we will attend the event that is best for us and I will figure it out.

I began my journey with fighting them, then I tried to reason with them. At some point years into this battle, I found I needed a new strategy. I didn’t need to fight back, it doesn’t matter. I didn’t need to explain it to them, they cannot understand. I needed to find a way to make my peace with this and still allow my children to do things everyone else takes for granted like going to a movie theater or a restaurant or any social event.

I have practiced with a number of responses and a number of reactions and I have found that memorizing and holding a “one liner” or two is monumentally helpful. I still have a fire inside me for them and it takes all I can to lower my heart rate, calm my breathing and speak to people not through my teeth. I still want to speak back with the same anger that has been shown to me for absolutely nothing that is a fault. Make no mistake, I am a mama bear and I will do anything for those children….anything. However, for protecting myself and our peace, I have come up with some one liners that have been very helpful.

I gently put my open hand up and say, “Thank you, I don’t need any help”. Then, do not look at them again. I don’t care how loud their mouth breathing is, DO NOT LOOK again. If you look, that invites their “turn” to say more irrelevant things. Walk away or look at your food and never look in that direction again. TRUST me. It seems rude, but this is better. It will not go well and you will not teach someone in that environment. This is the best one. A variance is whatever thing they say, just reply with thank you and say nothing more.

“Your kids are bothering me,” they say. Reply with a thank you and walk away. It works. I don’t know why it works, but it does. The third one I use frequently is “OK”. Ok to everything. Repeat OK after everything they say as you pack up to leave or as you sit there. DO NOT GIVE AN INCH. If you are not ready to leave, then don’t. They do not have dominion over you. No one does. So, stop letting them. Take back your power and keep your peace. You will get stronger and it gets easier. It gets so much easier, my friends.

**Today I was in Bojangles, a restaurant have frequented weekly for the past year, and the manager came to the table and told me she wanted me to know that my children are the best behaved children they see and they appreciate me. Years of work practicing is paying off and other people are noticing. I recall 3 specific encounters in this restaurant that I answered with my one liners and now we are celebrated there! It will happen. The burden is on you and it will be your hard work that will shine through your children. Let them be little. Let everyone else mind their business.

Create their space

Create Their Space

Creating their space

Mary Alice

There was a time when I was concerned about little things like how the house looked. I now know that spending so much time trying to keep up with everything and keep the kids out of everything is just not worth it. It is far more enjoyable and reasonable to protect my peace than the fight to keep something on the table, or the table for that matter.

I have eliminated Knick knacks, curtains, blinds, furniture and it made my life better. I realize these are just things to slow me down and get in my way and spend money on that are extraneous. Make the space your own and make it whatever works for you. If it looks like a warzone, then so be it, make the space for you and everyone else can adjust or not come.

For many years my living room was a TV mounted to the wall with PLEXIGLASS taped to the front of it. (TVs are expensive. Go to Lowe’s (or your preferred hardware store) any buy plexiglass (Lowe’s will cut it to size in the store for you) and then use double sided tape (Gorilla makes some extra strong clear double sided tape that is effective and I have used it for years without issue) and tape it to the front of the TV.) You will buy multiple TVs unless you do this.

Next, buy a mattress and put it on the floor (one of those comes in the mail in a box is fine, cheap is fine, it is just for sitting on. You are not trying to address long term back pain). No frame, that will only break toes and cause problems. On the floor. Then get 2 fitted sheets and 2 mattress protectors and double make the bed. Mattress protector, fitted sheet, mattress protector, fitted sheet. This allows you to change the bed at least once before having to strip everything. It just is this way. It will help. It will get stuff on it from diaper leaks, food, vomit, we will discuss the desire to play in excrement later, but just do this and save yourself time.

The good news is we have moved up to a TV on the wall and a sofa with the legs removed. Yes, my sofa is currently legless sitting on the floor. This is easier because the sofa will not survive them otherwise and their toes will not survive the legs of the sofa (2/3 kids have broken a toe, its 4 extra appointments and a huge time expenditure, remove the legs).

I used a privacy film on the windows to alleviate concerns about not having blinds and/or curtains. They pull the curtains down and the blinds have strings that one will use to hang himself. This is easier. DO NOT let them see you put up the film because they will need to peel it off. I started by putting the film on the outside of the windows for rooms they are in often and that is helpful. I put the film on the inside of the window and it was removed (picked off), so I put a row of caulk around the seam and that was also removed (picked off). It is a constant battle, but just keep going. Eventually you will have a home that works for you and you can venture into new and exciting territory like being able to go the restroom by yourself for a maximum of 2 minutes, but take what you can do.

We have baby gates and sippy cups and all the safety equipment. As they get older and smarter than the “baby” level proofing you will need to continue to grow with them. For sleeping, I have tried everything and really the only thing you can do is order a Bed by George. Your insurance will pay for this bed with a doctor’s order through a DME (durable medical equipment). It will be a small fight. Just have the pictures of poo smearing on the walls, windows, ceiling and floor (yes it will be, yes it will be okay). Also, documentation of them electrocuting themselves with an outlet or jumping out of a window (this can’t just be me) and then encourage the representative to sit with your kid(s) and it will go. This will allow you to at least try to sleep for 4 hours a night (not in a row, don’t get too crazy, but it gets better with a ton of effort).

Letting go of the expectations and the desire to have a lamp etc will make it easier. Once you make this change your children will flourish with the ability to move through the house (or at least the communal areas) and feel like they are a part of the family and you will feel better than saying, “stop doing that” one million times a day. Autism is compulsive and it is not controllable without a ton of work. Please find what you need to make it work for all of you. Stuff is meaningless. None of it matters. It can all be in a closet (I did this and now it is all at my local charity place because I realized none of it really mattered). Protect your space. You must. It makes what else is coming for you easier.

Specialty Beds!

Let’s Talk about Specialty Beds!

So you have a kid that elopes, electrocutes themselves with the outlet despite using traditional and nontraditional (printed outlet covers with a 3d printer that does not have holes) baby proofing methods, hangs themselves with curtains or blinds, jumps out of the window with traditional window locks and eventually you screw the window shut and put a window hammer in a nearby concealed area for emergencies? There is also the poo smearing and the urine collection and the flinging of waste and spit and vomit to consider. Also the shredding of anything in the room including the floor trim, dry wall, crown molding (yes, on the ceiling, yes I know, yes they have), unraveling carpet, removing of wall coverings (wall paper, peeling the paint off the wall). Flicking the light switch for hours (despite the baby proofing methods, the issue is baby proofing is for babies and when you have someone with a higher problem solving skill set than a baby…….), running for hours, screaming for hours. Bedtime is anything but relaxing.

I tried taking everything out of the room but a mattress on the floor and they still were not safe. I tried turning off the breaker to the room, bolting the windows shut, nothing was enough. I could not sleep and sleep deprivation in a special needs mom will negatively impact the whole family. You are going to be sleep deprived anyway, but any sleep is better than no sleep.

So, you go online and look for an autism bed and the Cubby Bed and the Zpod come up. These beds are good for kids that sleep in the closet or need a safer place to sleep, sleepwalkers, wanderers. This is not the case for those of us with kids that have no safety awareness at all. They do not fear the pain, do not experience the bodily cues to announce this is dangerous, they cannot understand what is dangerous and what is not. So what do we do?

Beds By George (https://bedsbygeorge.com/) is a family owned company that does support this type of child. They come with extensions that can extend to the ceiling or even has a canopy to keep your little darling muffin inside. I added a baby monitor with a 2 way camera to the ceiling and they know how to call out for me if needed and I can monitor them for sound or if I am needed for any reason, but I can sleep in my own bed and not with them or on a mattress in the floor of the hallway. This is the best situation that I have found. I can sleep now knowing they are safe in a substantial bed (Zpod and Cubby beds are not going to hold up to the more robust child). They cannot jump out the window, obtain things to hang themselves with and do not have access to the outlets and other high interest things that could kill them. They sleep better being “tucked in” and find it is safe place with a few baby toys (cloth book with all ties removed, krinkle fish, favorite stuffed animal) and nothing else. I did also get an astronaut light show machine (https://a.co/d/fhk1qdR) and they seem to enjoy it now that it cannot be reached and cannot be immediately disassembled.

Will your insurance pay for it? Maybe. Commercial insurance will usually not pay until something happens. Keep a lot of records, including photos. I found that inviting my sales representative to sit with my twins was very effective. I did mention that we do not have very

much furniture. Our living room did advance from a mattress on the floor to a sofa with no legs on the floor. No end tables, no lamps, no curtains, no blinds, nothing else but a TV very high on the wall (covered by plexiglass because I am sick of buying televisions, think like jail covering). All the communal rooms are designed similarly. If you go ahead and get rid of everything now, it will be less work than getting rid of it all later after you stuffed it all in a closet for later. If you have applied for the CCC+ waiver or gotten off the DD waiver wait list (about 10 years long) and you have supportive Medicaid, that will pay for it, if it is medically deemed necessary. It is cheaper to pay for the bed than hospital and ER visits, casts and so forth. So, keep trying. This is such a relief to the family and I have been consistently getting 4 hours of sleep in a row per night, so basically, a miracle.

What happens when YOU need care?

What Happens When YOU Need Care?

Mary Alice

What happens when YOU need care? You have 1+ kids with autism. They do not accept care from others sometimes, but mostly no one else can do it. It is very challenging to explain to people outside of the autism community that finding a baby sitter that will come and finish a shift is very hard, usually just not possible. Then they inquire about family. Family is either burned out or far away or cannot help due to the physical demands of caring for an autistic person. So what happens to you? You get overuse syndrome. Maybe it is just the shoulder or the hip, then the wrist, then the elbow, then all the muscles in your body stay so tight that orthopedic issues continue to arise and you cannot take any of the medications because you cannot be sleepy because you have a 24 hour a day job. It is really a 30 hour a day job, but again, outside of the community, it cannot be understood.

I anticipate an epidemic of autism moms that are not going to be able to have access to medical care because of their childcare needs. I am one of them. Postponing surgeries I need to correct problems associated with overuse and knowing that I will just have to limp until they get better. This is going to be a growing issue, because I am not alone. I don’t know what the answer is and it will take all of us to make a difference. I am working to get an endoscopic procedure that is currently offered only open. (Endoscopic - Small incision with shorter recovery and return to care. Open – open procedure that triples the recovery time and delays return to care.) I am planning to start a registry of some sort to help find a way to make a network of people willing to think outside of the box and treat us with respect and the understanding that we NEED to return to “work” meaning no one else is coming and no one else can really do it anyway.

Let me know what you think? Has this happened to you? Are you also not getting annual wellness exams and mammograms because you can’t take your child with you? What are you doing to make it work? Sharing what works is very important. I haven’t figured this one out, but I am trying to reach out to as many people as will listen to explain the challenges.

Toe walking

Let's talk about toe walking and why you need to fix it early!

Mary Alice

Toe walking is a retained reflex. The child will continue to toe walk just like all other reflexes as a natural way to walk. The child DOES NOT have control over this reflex. It is the same as blinking. I was told that I did not need to worry about this because they will “grow out of it”. They did not, in fact, grow out of it. What they did do is grow into hip problems and very tight muscles that prevent things like long sitting (sitting with your legs in front of you, like when you tie your shoes). They now attend physical therapy (PT) to learn new exercises and stretches while trying to adjust to the damage caused by toe walking.

There are shoes! You can buy on amazon and braces too! Your child wears them for some time (several weeks with potential for reminders) until they can discontinue the toe walking with muscle memory created by the shoe. If you have a toddler sized or child sized foot, these are available and I highly recommend fixing this prior to continuing to let them develop more problems. I wish I had known in time (mine wear men’s shoes at age 9….). They even come in cute styles and you could try multiple kinds of braces. Ask your Occupational Therapist (OT) or your PT for ideas and help and do not wait. Waiting is not always the best answer and you are going to be waiting from them to learn how to communicate the inside to the outside of the body (all the -ceptions, we will cover that in a separate INsider INformation blog).

So, I implore you to get the shoes. Go through the fight. Cry the tears with them, but help them before they have further damage. The shoes will be uncomfortable, but much easier than using the kinds of braces needed for an adult sized foot.