Autism Social Problems

Recently we went to the park. My son saw some other kids about his age that he wanted to play hide and go seek with. He asked if he could invite them to play. I encouraged him to do that. But I was wrong.

They told him they would play. They told him to go hide. He joyfully ran to hide. They just counted so he would hide and leave them alone.

I tried to explain to him that they weren’t really playing.

He went back and the scenario played out again. 

Sadly, I called an end to our time at the park and went home. 

People with Autism do not understand social cues and frequently cannot read our facial expressions. It’s both a curse and a blessing. A curse as you can see above. A blessing, because they have no idea just how cruel the world is. 

Please teach your children to be kind.

The Autism Poop Stories

Catchy title right? A little TMI? We’re just getting started.

Many children with Autism have issues with two different parts of “Poop Issues”. The first is chronic constipation. No one is exactly sure why this frequently accompanies Autism. Sometimes it’s due to their severely self-restricted diet. Some doctor’s feel there is a link between the brain and the gut. In our case, D also has low muscle tone or Hypotonia. After everything we have tried I am fairly confident that this directly ties into the problem if not being his sole cause. Your GI tract is made up of muscles and if they aren’t contracting strongly enough it leads to a build up.

D was first diagnosed with severe constipation at 16 months. It is likely that since starting solid foods he had been constipated but we just didn’t know. At this point however he was screaming all the time and his poor little bottom was bright red and bleeding. None of the diaper rash treatments were working. We had to have a special mixture and keep his diaper off him completely for several days. 16 month old without a diaper… That was fun. Especially at night when he’s wetting on everything and I have to keep him dry. (My husband was in Iraq for this fun stuff.)

We tested for food allergens to see if he was allergic to anything. He came back with a few. I remember milk being one of them, so we took him off milk despite it being his absolute favorite thing in the world. No difference.

We started him on Miralax. For about 5 years or so that worked pretty well. And then it stopped working. What followed was trying literally every medication there is out there for constipation, some not even cleared for children in our attempt to find something that would work.

At this stage, we tried allergy testing again and it came back with 12 different foods! We tried taking him off all of them for 4 months. The only one we really saw any difference with was wheat, but it didn’t allieviate it enough to stop taking medicine. His constipation was only slightly better. We tried natural remedies, we tried pretty much everything. We did find one medication that would work but it gave him the most horrendous gas 24 hours a day and he had to take 6 tablespoons of this syrupy liquid which he hated. He got to the point where he flat out refused to take it. All this was going on at the age of 5 and 6.

I will never forget the day the doctor called me and told me that it was time to take the next step. She wanted to operate on my little boy and insert what is used as a feeding tube for other patients, but in our case, it would be used to flush out his colon every night. I was terrified of this. How do I let the doctors do this? But how do I let him go on screaming in pain? At this point, he had developed a Mega Colon because so much was backed up in his colon that he was never fully emptying it and even when we did it would just fill right back up. This can lead to cancer and a whole host of other issues.

In August of 2013, he went under the knife and had his surgery which is called a cecostomy. To date, it is the second hardest decision I think we have ever had to make for his care.

We block out 30 mins to an hour every night and hook him up to his tubing while sitting on the toilet, where we use a flush of saline, Castile soap, and glycerine to flush out his bowels. While I’d love to have that time free at night for our family and for him, but this was the best decision ever. Occasionally we have to adjust the recipe for the flush but constipation is technically a thing of the past.

Due to his Autism and rigid eating habits, they think we will need to keep the cecostomy until he is in his 20’s. They think by then his understanding of the need to take the medicine and regulating his diet will be easier. Until that time we’ll just keep blocking that time out at night.

The second part of “Poop” and Autism? Fecal smearing. What is fecal smearing you might ask? it’s exactly what it sounds like. They smear their own poop. Sometimes they draw with it, other times play with it. It was all over him, walls, toys, the bed, the carpet… Luckily the stage of going through that was blessedly short for us though none the less horrific. This is also common with people with Autism. Grown adults have been known to do it. It made me feel SO much better when I learned that it is common also with extremely gifted and intelligent people. Mozart, for one, is known to have done it.

This is FAR more than you ever wanted to know about “Poop and Autism”. But now you know. 😉 By sharing this I hope other families realize they aren’t alone in this struggle.

ABC’s Speechless and What it Means to My Daughter

ABC has a new show this year called “Speechless”. This show showcases the life of a family with a special needs child. My husband and I watched the first episode together and couldn’t stop laughing, but it was also painful. Painful because it is so very real and lifelike for our family. It was hard to watch that being portrayed.

A month or two after it started, R (9 years old), decided to watch an episode with me. She was hooked. I asked her why she liked it so much. Her first response was that it was funny. (It doesn’t have Minnie Driver in it for nothing.) But it also has helped her see other kids dealing with a sibling’s issues. It has helped us have difficult conversations as it has given us a scenario to be able to safely discuss issues. It helps make her life feel more normalized. This has been a very valuable piece of the puzzle in helping her learn to cope with the life she experiences. It doesn’t begin to answer or solve all the things she gets to deal with as a sister of a child with special needs but it’s a start.

I hope that ABC continues to produce shows like Speechless, and formerly Switched at Birth. These don’t glorify special needs like other shows (the ones that come to mind are shows that show autistic children having almost magical powers), but instead, offer real insight into the lives of families that deal with these issues.

Taking Selfies as a Mom

Lately, I have been seeing a lot of posts on Facebook about making sure you are in the picture with your kids. I completely agree with that sentiment.

However…

2 kids, 2 back surgeries and living for 7 years in Alaska (when you have a bad back the last thing you want to do is go out in the cold and slip on the ice), my figure is not that of my 20-year-old self anymore. I loathe most pictures of me. There’s a reason my profile picture has not changed on Facebook since I started my Facebook account. It’s one of the only ones I like. It’s rare that I will purposely get in a picture. I keep telling myself I will do it when I’ve lost 20 (or 40) lbs. That occasionally happens but when it does I still don’t feel comfortable in front of the camera.

On my recent trip to Scotland and Ireland, I realized I couldn’t allow this to happen during this trip. This was just too important. This had been my dream since I was at least 5, if not younger. I needed to photograph myself enjoying this. These were memories that would last me for a lifetime. It wasn’t easy. But I did it.

I’d love to tell you that it became easier the more I did it. I’d love to tell you that through this experience I learned to love the way my body looks. But the truth is neither of those things happened. But I have the pictures of the beautiful places that I saw and loved, I have those beautiful memories and I can continue learning to live with pictures of myself. That is a win in my book.

The Place of Childless People in our Society

Frequently in American society, we view a childless couple or single childless people as less than ourselves. We view their situation in life as sad and don’t believe they could have a fulfilling life.  We have derogatory terms like “Old Maid” and many times I have heard it said that when men aren’t married by a certain age they are just “weird”, and everyone knows what they mean. 

Partially I think this is because the continuation of our species is in all of our best interest. We don’t want to see couples without children, as on a very primal level that scares us. From a sociological standpoint, it also makes sense as someone with children will have a person to take care of them and make decisions for them in their old age, thus potentially taking that supposed burden off of society.

But history belies this idea that people are “less than” because they didn’t marry or have children. The Bronte sisters never married yet gave us incredible works of literature. Beatrix Potter never married or had children and while she is most well known for her children’s literature she practically single-handedly saved the Lake District in England from being made into row houses and factories so that the beauty there could be appreciated for generations. Many childless men and women have made major contributions to our society at large.

Time and time again individuals have made their mark and made the world a better place simply by doing the best they could and trying to right wrongs, and their marital status and progeny had nothing to do with it. 

Years ago in my local church, the head of the women’s organization was a single childless woman, the head of the children’s organization was a single childless woman. Superficially one might think they had more time to deal with the organizational issues that arose since they didn’t have a husband or children, or that there is no way they could have been equipped to lead those organizations due to not having any experience in those realms. That couldn’t have been farther from the truth. These women were capable, empathetic, caring, and I saw the church grow in ways it couldn’t have without these women to lead in these organizations. They had unique perspectives to give and they gave their all.

Let’s start reframing our society’s idea of single childless men and women. Let’s realize how much they can and do contribute.

Welcome to the World of Special Needs Parenting  (A letter to newly diagnosed families)

Welcome to the world of Special Needs Parenting! It’s not somewhere you ever thought you would be, nor would you have ever chosen to be here. There are a lot of emotions going on right now, and you’re reading everything you can get your hands on right now to find out about your child’s diagnosis. Back away from the computer! It’s okay. Take a deep breath and hug your child (if they’ll let you).

I’m here to tell you that there is good news and bad news.

The bad news (because I prefer my bad news first), is that you are going to go through a grieving process. You are going to grieve your dreams of your perfect child who you thought would have no medical issues or other issues. You are going to grieve what your child has to go through and what the new reality of their life (and yours) is. You are going to be mad, scared, angry, and sad. Take the time to do that. Trust me, things will go better if you do.

Be prepared, this is a roller coaster. It’s one you don’t really ever get off. Just when you think things have settled down, a new diagnosis comes up, puberty happens, things that were working suddenly don’t, but there is help. This is where the good news comes in.

The good news is, is that you are about to meet some of the most caring, and wonderful community of people you have ever met in your life.

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One of my community of caring people.

And trust me on this, you want to make those other special needs parents your new best friends. They are the ones who are going to let you in on the secrets of how to get things covered your insurance company denies, where to get the best, cheapest and delivered to your door medical supplies, and who the best doctors and therapists are. They will literally save your life more times than you can count in the next couple of years.

Make sure you have a really good pediatrician. They will be at the center of all of this and you want them on the top of their game for your child. Taking them goodies doesn’t hurt either. 😉 Therapists too.

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R and D with their former OT and PT. Life Skills and Kids R People Too LLC, the best OT and PT we’ve ever had!

Some of our Therapists and Special Education Teachers have become some of our best friends.

When you are ready, DO share your child’s diagnosis with family and friends. They need to understand what’s going on so they can help you. You need that support and understanding. Take those offers of dinner or babysitting. (And if those offers don’t come, this is another reason why you need your new friends, “Special Needs Parents”.) There is nothing to be ashamed of with a diagnosis. It’s just what is.  It’s just where you are at right now. If you don’t share the diagnosis with your loved ones, the school, church teachers, they don’t know how to support your child. Knowledge is power. Power to help, power to have more patience, power to understand and this is extremely valuable for our kids and for you.

Most of all, know that the diagnosis doesn’t change who your child innately is. They are still your baby who you have loved, the person you have known. This is new territory and one you didn’t expect to find yourself in. Give yourself and everyone in your family some grace, spend your time grieving, and then find your community. You’ve got this!

(This was written, as a reflection of what I would say to a couple of friends who have joined the ranks of “Special Needs Parents” unexpectedly in the past year, and I wanted to put some thought into what I would say to them if I could sit down with them over a bowl of ice cream.)

The Elephant In My Life

 Elephants are beautiful majestic animals. They are also some of the heaviest animals on earth. This perspective of being on the ground and them coming for you, it’s a good illustration of what an anxiety attack feels like.

There is a difference between being anxious and worried about something and suffering from anxiety attacks. Anxiety attacks can come on with seemingly no warning. Let me rephrase that. There usually are warnings but I’m usually too busy living my life and ignoring them. (Not recommended.) Except for my migraines. Those are hard to miss. But they are my last warning that some major anxiety attacks are on their way.

My anxiety attacks will go dormant for a few years if I’m taking care of myself. But then my life spins completely out of control, and let’s face it, life has a habit of sending you curve balls (especially if you have children with special needs and a husband in the military). I deal really well with the immediate aftermath of a situation. It is only later, when I feel everyone else is okay and it is safe and I think I’ve made it past that hurdle then these things we call anxiety attacks, panic attacks, and a few other names, rears its ugly head.


When I’ve gone through a period of remission and my anxiety attacks come back, in my case it likes to choose a totally new way to exhibit symptoms which make it harder to realize what is going on.

Although I wasn’t diagnosed until my husband’s first tour in Iraq, I believe my first time with anxiety attacks was when I was a live-in nanny and broke my leg. My boss was NOT very understanding. I spent almost 6 months in either a cast or a brace. I couldn’t eat much and would throw up. A few years later I was married and my husband was in Iraq with the military. This time it made me shake uncontrollably, feel detached from what was going on and made the room spin. That was LOTS of fun 😬. The next time I was living with my Mother-in-law while my husband was going through training, it felt like I couldn’t breathe. The doctors at first thought it was asthma and I even had a trip in the back of an ambulance as I couldn’t breathe. Nope. It’s just my old friend anxiety attack rearing it’s ugly head again. The latest is severe eye pain accompanied with migraines.

Frequently “lesser” attacks feel like the world is overwhelming and everything is going wrong, I can’t do anything right, and everything is going to go wrong. I’ve learned not to listen to these thoughts. I know that it is all in my brain and the chemicals in my brain are out of whack. This is usually due to me not being vigilant about taking my medication and it’s at those moments that I need to take my medicine, make my world smaller for a short time, get a good night’s sleep, remember to breathe and most of the time things look better in the morning.

Some things it has been important for me to learn with this disability-

  • It’s not my fault. I didn’t cause this.
  • What my brain is telling me is probably not true, so I need to wait to make big decisions.
  • Sometimes, it’s okay to make your world smaller as long as it isn’t permanently. Quit answering the phone and texts. Take time to focus on me. Some personalities I just can’t handle during this time, though I like those people.
  • I can and should ask for help when I need it.
  • I need to listen to what my body is telling me. Have I been spreading myself too thin? Are there too many obligations on my plate right now?

This is something I will probably always have to live with. It is something I will always have to watch for and work through. Maybe my experiences can help someone else out there.