When we lived in New York I used to take the Long Island Railroad to work every day. I knew the destination I wanted to travel as it was clearly communicated by the Railroad company. I followed their posted times so I could get on the train I wanted and get to the location I planned. If I was running late, the train would not wait. If I was in need of a different route, the train would not stop there. If I was unhappy with my experience riding the train, there are people available to contact and a process available for me to administer my complaint.

A woman was in the paper today for being excommunicated from the religion I am also a member of. The notion of a train came to mind for some reason when I thought about my deeply personal decision to join this organized religion. You either get on and follow its destination or get off. When I was interviewed by the assigned person and discussed my desire to be baptized all those years ago, I agreed I would not actively take part in any movement that operated against the church and its teachings. A church I fully believe (which may sound silly to some) is run by inspiration from God. He's the conductor. His train's moving forward with or without me. I may not always understand the path, but I know what I agreed to when I got on and it's a privileged to be on this journey. Not an obligation. We believe our destination is eternal life with God in heaven. With our families. We also believe we are perfect in the afterlife (which is important to note considering the kids are home all summer fighting with each other). That being said, I can't imagine anything more awesome than being with my family forever. That's a pretty rad final destination I don't want to derail. 

There are some people who may only hear of this gospel I dearly love from the perspective of an excommunicated, disgruntled woman. Having lived in a place where few know about us, this hurts my soul. These headlines may be someone's first exposure to something so much bigger and more important than one lady's unsettling feelings about a religion she chose to be part of.

Organized religion isn't perfect. The people who run it and follow it are not perfect. But it's an option and it comes with guidelines you agree to when you become part of it. It is run by God. And He is perfect. 


Autism Advice

Since my oldest was diagnosed with High Functioning Autism at age 5 many years ago, I have welcome the opportunities of talking to other mothers who are facing a similar start to their journey. It's always important to me to be honest and not sugar-coat my story. I put this here in case it helps even just one family along their way.

1) Find the subject matter expert with credentials in what your instinct is telling you might be different about your child. I spent many years in and out of early intervention appointments, doctors, and therapist offices trying to figure out if we were dealing with Autism or not. It is critical to find someone who has spent a lot of time researching, diagnosing, and working with children whom have the 'difference' you suspect.  I had a child psychiatrist tell me nothing was wrong and to buy the book Alexander and the Horrible, No Good, Very Bad Day. She was not a specialist in Autism. That was valuable time he should have been getting speech and learning at a young age how to engage with others before bad habits were developed. 

I found my expert by attending an advocacy group in my town comprised of moms who have kids with Autism. They were the best source of direction.

2) Get over the fear of a "label".  My son has struggles no matter what we do or don't call them. Finding out what it's called was the key to unlocking a treatment plan and path for support to help him learn the way he needed to learn. Without a  'label' the medical industry may not cover costs and at school it was the only way he was going to be able to join the mainstreaming program and aids that helped guide him. Without the label, he would not have had the tools available in the community or in school to develop and grow as quickly as he has. Pretending it's not there won't make it go away. Especially if it's a challenge the child will need to learn to manage and work with their whole life.

3) It's not your fault. You have done nothing wrong. It's okay that you aren't a Developmental Pediatrician, Speech Pathologist, Physical Therapist, Neurologist, Neuropsychologist, Behaviorist, and Occupational Therapist. (These are all the specialists many children on The Spectrum work with.) It would be great to put life on hold, go get those degrees, then come back and be everything you wish you were right now so there wasn't such a steep learning curve. Be kind to yourself. You're enough! You'll learn quickly and these people will become part of your village raising him.

4) Grief is often part of the process of finding out about a child being different. Many moms I've been in touch with have experienced going through all the stages of grief. It's normal. I slipped into a clinical depression and needed help. It's okay to need medical help while you cope and adjust. It's a lot to process and adjust to. I was so overwhelmed, sad, and worried about his future it felt like the plans we had in store for him came undone like a rope being unraveled. It would have been so beneficial if I had worked with a therapist. Not everyone will struggle like I did, but if someone does please know it's okay to find yourself professional support.

5) It's okay if a therapist is a bad fit. I've had to break up with therapists (PT, OT, Speech) for various reasons. It's so hard, but important to remember your new mission on your resume is to be your child's best advocate. So if personalities aren't clicking with the therapist and the child, their feelings about changing isn't the priority. If the therapist isn't quite getting how the disability impacts the child or you're not seeing progress with your child, look for another therapist. The best way to phrase it is 'we're just going to try another approach'. Often you can try another available therapist at the same clinic or ask other moms about their contacts.

6) Your husband is going to be coping with this at a different pace. This is normal. I think we've all seen the high divorce rate for parents impacted by having a child on The Spectrum. It's a lot of added stress to a family. Men and women cope with things differently. Counseling could be helpful for some families. Make time for regular date nights!

7) Finding your advocate voice can be intimidating, but is crucial. Especially when trying to work with schools and the IEP process. Using a local parent support network is highly recommended. Learning your child's rights is important (see IDEA Law and read FAPE). If necessary, ask your child's doctor (the subject matter expert) for referrals for advocates you can hire or even attorneys who specialize in advocating for kids with special needs. 

8) Siblings are part of this, too. In my case, I have 2 younger children who had had to do a lot of waiting and watching. While they are learning patience and the beauty of helping another, they also need to get the 1 on 1 attention when possible. When old enough, find simple ways to explain how the other child is different and share some of the goals he or she is working on. My middle child was really hurt that HE didn't get to have his own Miss Meagan for OT, but once he understood why she came and what they were working on teaching my other son, he understood. 

9) Have an 'elevator speech' prepared to explain your child's struggles and the best way to help him or her. For swim team or a substitute teacher at church, I have learned a quick overview is helpful to give that person a heads up that things operate a little differently and a little more patience and guidance is required. It's always met with a smile and I check in to make sure behaviors aren't too out of control (unexpected change can be really stressful for my son). 

 10) Be sure to take a break. You need to secure your mental health so your canteen doesn't get empty. Know what helps you relax a bit and step away from the demands to take a breather. Some love the movies others a social night out with fun friends. People will offer to help you- this is how they can. Let them put the kids to bed so you can get a break. 


In Jello

(photo from 6/9/2013)

Reflecting on last year it seemed we were frozen in time while Mike's life became overrun by medical urgency. Starting in January, he had a major brain procedure every 3 months. Surgery, then a bigger surgery, then radiation for a month. He claims the radiation was the worst. How could you possible choose a worst of three horribles? It would be like insisting a head on collision would be worse in one brand of car over another. It's three versions of bad! We'll just have to take his word for it.........I guess.

I can't speak for him on how the whole thing shakes out with hindsight. For me, I can best explain it this way: It was like we were stuck inside a mountain of jello. The world around us kept moving and we could see it clearly, but were not part of it. We were separate from it, suspended in another dimension where things moved more slowly. If at all. The outside world was nothing I could relate to. The constant press of concern and worry about my husband's brain expanded into every space available within my head. Conversations left me feeling bored, confused, frustrated, or downright mad that another topic would dare try to enter. That space was already burning and full of dread.

Who cares if your garden isn't growing. His head was cut open!

Don't they see we're suspended in jello?!

No. People don't see it. They don't know. Unless they've been stuck in it, too.


Back in my working days there was a woman who worked on my floor who never smiled. People in the building had a nickname for her, but I won't repeat it because this is a family site. Let's just say it rhymed with stitch. Any smile or hello was rudely ignored.

When I was stuck in jello, I was a total stitch. I couldn't find my friendly. I lost my social skills for a while. I couldn't fake it. And I now understand that sometimes when people can't smile back, they might be in the middle of something really heavy. They just might need some space and understanding. Or a plate of cookies left on their desk with a nice note. I wish I did that for the work stitch. Lots of people did that for us and it was the only thing that felt good: food. Words didn't matter so much.

I'm not in the jello anymore and it's refreshing to be part of both complex and mundane conversations. Regular life with uncomplicated words and the absence of constant fear. I hope I don't forget when I see someone else in jello. Instead of being offended, I hope I remember to feed them.