autism · family · parenting · special needs parenting

Dear Co-Worker of a Typically Developing Child:

*This is a guest post by a friend of mine. I’ve never been able to balance more than very part time work for these very reasons. *

Dear Co-Worker of a Typically Developing Child:

I am writing this because I hope this helps someone. I hope this teaches empathy to at least one person. I hope another mom, another special needs mom, can be spared sitting in a work meeting holding back tears, while visibly shaking, after a coworker belittles and breaks down whatever piece of soul is left that day. Because some days – it’s not much.

Life with Autism is different for everyone. For me – every morning is hell. My son is angry and violent until his medicine kicks in. I rush to get ready and get his siblings ready before I wake him up. A fruitless attempt to shield them from the mass destruction and chaos and anger of him (just) waking up. I scramble to create a space where he can be angry alone while I am dressing 2 little kids. It’s an elaborate game I have yet to master.

But, I really thought I (kind of) had it all together. My life mantra consisted of drop everyone off, cry in the car during my commute, do my makeup in the parking lot at work, head inside work repeating an off key version of “a cover girl doesn’t cry after her face is made” or, sometimes even “big girls don’t cry” in my head. Over and over. A fake it until you make it type thing.

Recently, somewhere along the way. And, honestly, I’m not sure where. But, you, a coworker decided that my son was causing a nuisance to our work environment. That my being late or leaving early or whatever the case may be was affecting you in some way. Or, at the very least obviously annoying you.

Yes, I was late to work today, again. What you don’t know, even though both supervisors did, was I spent my morning touring the third, yes third, potential school for my son. He has missed more school than he has attended this year. Actually for 3-years in a row, now. That is not okay.

Yes, The week prior I missed a regional staff meeting at work. It was a really important meeting. I should have been there. Instead, I was in about hour-24 of sitting in crisis with my son. By that point I had been awake for 48 hours straight, had police contact twice, DYFS (division youth family services) contact multiple times and been back and forth to a hospital 3 times (2 different hospitals). I would have much rather been eating bagels (my favorite part) at the staff meeting. Trust me.

I pray you never experience any of this. I pray your heart is protected from the pain of watching your child suffer day in and day out with no real way to help.

You see by all accounts I am a well respected, educated, knowledgeable professional. I went to school for almost a decade. I have a lot invested and riding on this career thing. Every program I enter – every story I hear – more often than not – I think of my son and what I would want for my child.

We use our paid time off differently. You go on amazing vacations. That’s awesome. Really. Most of my paid time off from work goes to my child. Meetings, appointments, the crisis of the moment. I don’t get extra free time off. I really hope you understand that. In addition, I never ever want my personal life to make me seem incompetent. Ever. I work through lunch, take on special projects, work from home – do anything to prove my worth. That my family, my Autistic son with PTSD, anxiety and mood disorder does not define my capabilities as a professional. I’m not trying to look better than you. I’m trying to make up for all that Autism has stolen from my life and career.

I don’t expect you to understand any of this. I’m not asking for privilege or special treatment. I’m asking for kindness. Basic human kindness from one person to another. And, maybe, a teeny bit of compassion. If not for me – then hopefully for the next special needs mom.

With Love,
Every Special Needs Parent (Everywhere)

ADHD · autism · cancer · church · Down syndrome · parenting · special needs parenting

Can We Talk About Church?

It has been over 5 years since I set foot in a church building. I doubt I’m going back. Check that, I have no intention whatsoever of going back.

The reasons I stopped are complex, a woven tapestry of questions and difficulties, which ultimately left me questioning, then abandoning my faith. Not the least of which is the problem of suffering, which is too big of a topic for today.

I could write for days about the many layers of it, but I need to start with the single biggest hurt. A hurt so deep it took five years to scrounge up the courage to address it.

It came down to diapers.

Ben has Hirschsprung’s Disease. For him, the disease, complicated by other medical conditions and his blend of intellectual disabilities (Down syndrome, autism and ADHD) means that he still wears pullups as a teenager, with no end in sight.

Why does that matter?

Because before he had his bowel management program, and even now sometimes, he has bowel movements that he can’t control.

Poop is where church ends. Poop is the special need that doesn’t get met by ministry. We had ONE volunteer who changed pullups. If she wasn’t available, I was called out of church, called out of volunteering for the girls ministry, and often it was more than once in the hour or two we were there.

Believe me, I know that big kid pullups are not pretty.

And I know that there are concerns about volunteers being able to give privacy for the changes and still have the necessary oversight to ensure that he is safe.

But it was never even about that.

I could try to find a nice way to say it, but the real crux of the matter is that ministry comes with an asterisk.

My boys have been lost in church, to be found in the boiler room or locked in an elevator. They are “hard” they have never done well in inclusive classrooms or fit into programming. We always kept a smile on our faces and kept trying.

Then one day the message got through to me. Even in a church with a ministry designed for people with disabilities, I was doing most of the work for my kids to even be there. I was getting called out of services and volunteer time (please note, I faithfully volunteered 6 or more hours a week), and I still carried most of the responsibility for keeping my children safe and cared for when they accompanied me to church functions.

When the message finally got through to me it broke me. My boys were not wanted, they were only included if I was willing to meet all of the “unpleasant” needs.

When I stopped going I told myself we would try again.

After two churches, a special needs ministry camp, and about a dozen years of failure and frustration, I had lost the heart, and we still haven’t returned. And we won’t.

I have found the incredible value of radical acceptance. There is something glorious about caring for a human being who has bowel movements in their briefs and has the chutzpah to resist being changed. Recognizing this has brought me past the end of myself; changing the pullups of a teenager has brought me to a place of radical acceptance. My son is worthy and wonderful, acceptable and embraceable exactly as he is. I want him to be with people who recognize that.

The church, with only a few noteable exceptions, is not a place where people recognize that. The message is clear. He doesn’t belong there. We don’t belong there.

I am no longer bringing my children ANYWHERE that they are not wanted and fully embraced.

For a time I was ashamed that we couldn’t make it work. I’ve since recognized that no matter what I did it would not have worked. Ministry comes with an asterisk. There are still lepers and untouchables. There are still many who go around the hurting people, carefully avoiding the untouchables. There is no irony to me in the story of the Good Samaritan, it still plays out today. The chosen skirt the untouchables still.

advocacy · autism · special needs parenting

Is The Inclusion Movement Inclusive?

When Alex started school mainstreaming he struggled with his Early Childhood class, overwhelmed by the environment and expectations. His teacher recommended switching him to the general education kindergarten and is OT recommended a different preschool with reverse inclusion, which brought typical developing peers into the special education preschool setting. When I visited this classroom I was astounded. I have never before or since seen twenty preschoolers sit and pay attention the way they did in that classroom. We chose that option over kindergarten. It was hands down the best school environment my boys have ever experienced.

When it came time for Alex to enter elementary school we had open-ended time in the general education classroom for him. As needed Alex and a parapro would go from the first grade class to the special education room during the day. We planned to start with circle time and add in from there.

The only problem with our plan was how much he hated the general education classroom.

We switched up times and opportunities and used creative problem solving strategies and the only thing that remained consistent was that Alex totally shut down in the regular first grade classroom and did fine in the special education room.

We repeated this yearly from first through sixth grades.

Alex did great in general education specials and recess, but every time he set foot in an inclusive classroom he couldn’t cope. No matter what we tried to help him.

We came to the conclusion that his mental health and ability to learn trumped inclusion at all costs. Our son’s academic, mental and emotional well-being were at risk when he was constantly pushed into the general education classrooms. He wasn’t learning anything, neither the academics of the class nor the peer modeled behavior and social skills because his whole being was unsettled.

Sometimes I wish we had kept trying, sometimes I think we tried too hard for too long. And I often am ashamed to bring it up because in today’s inclusion environment, using the self-contained special education room for the vast majority of the educational time is frowned upon.

Enter Ben.

Ben not only has intellectual disabilities, he has the trifecta of autism and ADHD with his Down syndrome and bipolar thrown in on top. Not only that, he has complex medical conditions which makes management of his behavior extremely challenging.

Ben thrives in a self-contained classroom in a self-contained building. He needs a robust staff to student ratio to manage his sometimes violent meltdowns. That is done without isolation because he has the proper ratio of adults who help keep him physically safe and help him feel safe in his body. This therapeutic environment is necessary for any growth.

Choosing self-contained classrooms feels like a dirty little secret, something considered antiquated and shameful. I’ve been cautious about sharing our choice for fear of being misunderstood.

And that’s why I’m writing this. I shouldn’t have to hide our truth. While I realize that inclusion is best practice and the reasons for choosing it, I also fully recognize that one size fits all education doesn’t exist. Insisting that all students with intellectual disabilities must be in inclusive settings is not going to fit everyone any better than shoving all those students into self-contained classrooms all day. Each student deserves to have their specific needs met, and the IEP is the tool to use to facilitate that. For some students the least restrictive environment is a classroom with hearty supports which means that they can enjoy full school days in a safe environment.

I have sometimes felt marginalized by the inclusion movement. Hearing some advocates of inclusion use language like hidden away, locked up, or shoved in a box to describe self-contained classrooms and schools shuts down the conversation about the available choices and shames parents into either making poor decisions for their students or hiding the choice they’ve made.

Every student deserves to have the option of inclusion in the general education environment to the maximum that works for them, and at the very least attempting it should be considered or encouraged. At the same time, we must understand that every student deserves to be in an environment where they can grow, develop and thrive, whether that’s with non-disabled peers or not.

Using person centered, individualized planning for every individual and embracing the variety of settings that work for different students while understanding and respecting choices that are different from our own should be a foundation of the community of people with intellectual disabilities and their parents and caregivers. You can believe in your own choices while respecting that the choices of others are valid.

Writing this feels like a cathartic confession. I know we are not alone because the classrooms we have used throughout the years are filled with students. Those students are being served well and deserve the respect of their community.

ABA therapy · autism · introvert · parenting · special needs parenting

So This is In-Home ABA (End of Summer Edition)

Summer is a thing around here. The only thing I can count on in life is that July will spiral out of control and become a complete disaster and August will either be cleanup or disaster part 2.

This year August was mostly cleanup, but after 11 weeks of having Alex here 24/7 and Ben here except 3 half school days for 6 of the weeks We. Are. Toast.

One axiom of our reality is that when the shit flies we learn a few things in the cleaning up, and that was true again this year. An unexpected benefit of in-home ABA has been having a behavioral team alongside us to sort out the shit as it flew and as we cleaned up, and as a result we learned and grew more than normal.

Ben’s therapist immediately developed a rapport with him. With Ben you either have it or you don’t, so we were ever so grateful that she does. As the months have gone on (we’re at about 5 months now), she has jelled with the whole family, becoming an asset and support, mostly for me, which supports us all (there’s no question that I’m the backbone of our home).

We started off with numerous daily living skills, which was soooo tedious, but as we move along and the skills come to fruition, I’m so glad we did. Ben does many daily tasks for himself, including dressing, making his bed, washing his hands and face, and is doing some basic cooking tasks as well. In fact, the therapist helped Ben and Alex bake a cake for my birthday this week, hitting another goal which is to enhance the often tense sibling relationships.

Therapy increased to 30 hours a week over the summer, which is a ton of time to have someone working in our house. It’s definitely not for the faint of heart, and this borderline reclusive introvert is going to soak in the quiet when school (finally) starts next week.

As I indicated above, perhaps the most beneficial part of this is having a team with various backgrounds and educations to witness and troubleshoot the behavioral struggles occurring. I have noncritical allies in the trenches who toss out ideas and suggestions for us when the road gets bumpy.

In-home ABA is the only option here because of the rural area in which we live. I would love for some clinic ABA time as well, but it isn’t a thing here. But we sure have benefited from in-home services so far.

ABA therapy · autism · parenting · special needs parenting

So This is In Home ABA (part 2)

We didn’t have a clear picture of what we wanted out of ABA, but our hope was to tackle non-compliance and meltdowns, as well as things like gaining greater ability to wait for things and to improve family relationships.

Our BCBA (whom I will refer to as Oz, because she’s great and powerful and largely behind the curtain) helped us identify specific areas to address as well as inserting some activities of daily living (ADLs) and household chores.

One of the odd things that has been a frustratingly persistent issue is hand-washing. We can only guess that it’s a throwback to cancer treatment, but Ben is has what we believe is a trauma trigger associated with hand-washing. Yet, he also has Primary Immunodeficiency, so he can’t get away without hand-washing. It’s been a daily battle for years.

When ABA started the therapist took over hand-washing as one of the ADLs she would work on, and just having a different person making him do it helped a lot. Just 7 weeks into therapy, on a day that the therapist wasn’t working, I asked Ben to wash his hands, and with only a mild protest, he did it. Just like that. Though daily results vary somewhat, the net effect is improvement that steadily continues.

Another area we were desperate for help was pottying. Ben has Hirschsprung’s disease and a stoma in his bellybutton into which we run fluids to clean out his large intestine. This greatly reduces soiling in his briefs, but it is a big ole bummer to do. Especially when Ben doesn’t really appreciate the benefit. This is the biggest, most predictable area of non-compliance and meltdowns for him. He has to stop what he’s doing and transition to a procedure that is not painful, but not pleasant, and sit on the toilet for an hour. Though we try to help him cope, with all the daily responsibilities and life, he often sits through much of it by himself.

In tackling this, we got a systematic approach to making potty time less of a bummer. Between a marble in a cup reward system and the therapist spending most of his potty time in the bathroom with Ben, we’re slowly making headway on the potty time meltdowns.Ben got a pizza and cake party as a reward for collecting enough marbles, and is on his way to the next level reward. It’s not ideal yet, but definite progress is happening.

The daily nuts and bolts can be great, frustrating and everything in between. For example, a daily schedule is filled out at the beginning of the session, and is followed for the duration. Recently Ben didn’t want to create the schedule and threwdown for an hour and 45 minutes of non-compliance instead of creating the daily schedule. While we obviously don’t love this, the fact is that he was having major non-compliance episodes anyway, and we didn’t have a behavior therapist on speed dial to coach us through it, and there was no therapeutic benefit. So while it can feel a little absurd to spend almost half the therapy time in non-compliance, that’s really the point.

As for me, I find it a little bit validating. After years of trying to parent Ben through this, having a team behind us, and other adults working with these behaviors, well, I don’t feel so alone.

Long-term, I don’t know how it will play out, and I don’t have set goals for what this will look like 6 months or a year or two from now, or how long we’ll keep this up.

The little victories bode well for bigger ones to come. And best of all, Ben adores his therapist, even when she makes him do things that tick him off.

It’s been a lot to get used to. Changing the way we parent and having another adult in the house up to 25 hours a week definitely impact every one of us almost daily. It’s not a decision to take lightly, that’s for certain.

For us, for now, the benefits are worth the sacrifices, and we’ll continue to assess that as we go, knowing that we can make changes as needed is an important key to the plan.

Down syndrome · special needs parenting

A Heartfelt Letter To The Neonatologist Who Told Us Our Son Has Down Syndrome

Dear Doctor,

I don’t remember your name, or even your face. The one and only time we met was one hell of a night. I doubt you remember us; it’s been 17 years.

We had nearly lost our baby and were in the midst of an emergency C-section required for fetal distress. Our baby had been resuscitated, and once stable, you brought him to us. I don’t know how much you knew about what had transpired, but I doubt it was your first experience with such a delicate situation.

I was eager to see my baby, a boy, and you showed him to me, introducing us for our first face-to-face meeting. You showed me that he was breathing well, even though he still needed an oxygen mask, and you showed us his sweet fingers and toes to count. I know you needed to whisk him away to give him further care, but the extra moments you gave us were so sweet. You then pointed to his eyes, his small head, his ears, and you told us how sweet those features were. You suggested, ever so gently, that those features looked to you like he could have Down syndrome, and that you would like to order tests. You explained that it would take a week to find out for sure, and told us you wished that wasn’t so, because waiting is so hard. You let us kiss him again, and told us what a wonderful, miraculous baby he was before rushing off with him.

I didn’t know it at the time, but what you did was unusual. You blessed us with your demeanor and words. You reassured us that our baby would be okay, and that he was entirely precious, no matter what the test results showed. You gently ushered us into a whole new world, and you did it perfectly. Thank you for your words, and thank you for your support.
Alex does have Down syndrome. The events of that night made it easier for us to wrap our minds around that. Having nearly lost our baby, seeing him alive with Down syndrome seemed like an easy reality to adjust to. But your kindness, your introduction of him to us as a baby first, set us up for acceptance. I wish I could see you one more time and tell you to your face how blessed we were to have you there with us that night. I hope that somehow you know.

special needs parenting · The Year of Turning Eighteen series

The Year of Turning Eighteen (part 1)

Alex with his brand new braces

Next week Alex turns 17. In preparation, we have signed onto the legal plan with Mike’s employer, and are making big plans.

Why all the hullabaloo?

Because when a person turns 18, they are legally an adult and responsible for all of their own legal decisions. That includes financial, medical, educational, and everything else. When that person has an intellectual disability, the ability to make those decisions is different, meaning that we need to determine if and what type of a a safety net should be in place.

Alex can read at about a fourth grade level. He can do elementary math and use a calculator. His emotional development is also at an elementary stage, meaning that his impulse control, long-term planning, and ability to make decisions about housing, medical needs and even grocery shopping is about that of an average fourth grader. In Michigan he can attend school until he is 26-years-old, though we are not sure if he will attend for that long, he is still nowhere near high school graduation. We still have great opportunity to maximize all of those skills in school. Realistically, he will probably always need guidance for things like informed medical consent and legal decisions. To give a glimpse of what this looks like, Alex recently got braces. His orthodontist explained the process thoroughly, and we reinforced the explanations. When trying to eat dinner the first night with braces, Alex’s teeth were too painful to chew. His solution to the problem was to remove the braces. He knew that the orthodontist would have to do that, but he wanted to return first thing the next morning and be done with the whole ordeal. If he had legal decision making capacity and transportation, I have no doubt that he would have been on the doorstep of the orthodontist well before the office opened the next morning. While I don’t blame him and we all have those feelings, it’s also important to keep Alex safe from his immature decision making process.

Then there’s the obvious issue that he cannot drive.

Thus, before he turns 18, in 372 days, we must have a safety net in place. That safety net is in the form of either Power of Attorney or guardianship. We presently lean towards Power of Attorney for Alex, which gives him greater control and autonomy to him, but the decision is not yet final.

The first step is to get his full educational evaluation completed, which is in process. From there we contact an attorney who participates with our legal benefits and get guidance on the best way to move forward for all of us.

My hope is that by documenting our process we can help other families navigate, so this is where it begins.