mother of a child with autism Archives - Journeying Outside My Box

5 Things to Know about the Mother of a Child with Autism, Part 3

April 15, 2025 By Rebekah 0

This is the third in a series of five posts dealing with things to know about the mother of a child with autism (relevant for any set of special needs). The full text to this series is authored by Amy Fenton Lee, is being used with permission, and can be found at the blog for The Inclusive Church.

I particularly enjoyed reading this portion of Amy Fenton Lee’s blog. This section of the blog deals with everyday feelings that mothers have, but also with how church ministry leaders can help parents of children with autism to overcome fears and have their children actively participating in church activities.

Part 3: She fears exclusion.
Few things feel as threatening to a mother as does something that jeopardizes others’ love for and acceptance of her child. The autism diagnosis is that big, bad label that justifiably feeds a mother’s greatest fears for her son or daughter.
*Will he sit alone at the lunch table for the rest of his school career?
*Will she ever be invited to a birthday party?

When children’s ministry teams understand this fear of exclusion, they can better understand why so many parents choose not to reveal their child’s diagnosis to the church. While some parents worry that the church may refuse care for their child, oftentimes the fear of peer rejection is an even greater deterrent to disclosure.

I think that any mom (or dad) can understand the feelings described in the first part of the excerpt from Amy’s blog. That seems to be a fear over which a lot of parents I know, express concern. However, knowing some parents of children with autism, and having worked in special education, I agree with Amy - the label of “Autism” does make a parent more concerned with how his or her child will be accepted.

The reality is that autism is becoming so much more common. Depending what you read, the stats are anywhere from 1 in every 88 kids, to 1 in 50 school children. That’s why awareness and education is of the utmost importance. People need to understand what autism is, how it affects an individual and their family, and that autism is a different type of “normal”.

The second part of the excerpt deals with children’s ministry teams in churches. So much needs to be done to refocus how children’s ministries work, in light of the prevalence of autism in today’s society. I’m not necessarily meaning that we need to change the ministry, but that we need to “teach the teachers” how to help our kids. Amy’s blog lists some wonderful ways to do that. I’d recommend you just hit the link and read what she has to say on this topic.

Tim & I are blessed to be part of a church with a wonderful children’s ministry. The teachers know and care for the kids. We have explained, to some extent, our guy’s issues so that the teachers can be aware. There is definitely room for growth in terms of teaching the teachers how to work with special needs children. But it’s wonderful when you can say to the teachers, “It’s not that my kid isn’t listening; it’s that they learn differently” and then find that the teachers are actively pursuing more information on the particular needs, to help your child.

With autism and so many other special needs, there is a real need for the child to be involved socially in their peer group - not just to show up, but to actively participate. As parents, we have to make sure that people understand HOW to help our kids. We don’t want to fear exclusion; we want to know that our kids are participating and being included!

Did you miss the first two parts? You can catch up here:

Part 1 - She may feel relief from a diagnosis
Part 2 - Grief vs. Hope

5 Things to Know about the Mother of a Child with Autism, Part 2

April 8, 2025 By Rebekah 4

I’m excited to share Part 2 from Amy Fenton Lee’s blog series on “5 Things to Know about the Mother of a Child Diagnosed with Autism”. Again, this focuses on understanding the mother of a child with autism, but applies well to both parents. This is an excerpt from her well-researched and carefully prepared series. Please click here to read her entire post. I’m running this series each Monday this month, for Autism Awareness month. If you missed Part 1, you can find the link at the bottom of this post.

“Part 2: She may experience the conflicting emotions of grief and hope.
While grief is natural part of any special needs parent’s journey, it is experienced and processed differently for the family affected by autism. However, the range of possible outcomes varies even more dramatically for the autism diagnosis compared to other disorders and disabilities.

So, should a mother grieve the life she envisioned for her child? Or should she buckle herself in for a bumpy ride…remaining hopeful and doing everything humanly possible to help her child reach their full potential? Sadly, the pressure is great to keep silent and process her emotions alone. In fear of creating a self-fulfilling prophecy for her child’s future, a mother may remain tight lipped, avoiding conversations revealing her daily realities.

When engaging friends who parent a child with autism…Give them permission to both hurt and hope.”

A friend said to me recently, “I don’t know how you do it; you’re so strong with all of this.” I was impressed - my plan to appear strong and in control was working! I almost wanted to just thank my friend and walk away. But honesty is always better.

I took a moment, smiled, and responded that I have to be strong a lot of the time, but that’s not always how I feel. Temper tantrums, need for schedule & routine, drawings on the walls, and bad attitudes definitely take their toll. There are moments when I find myself thinking, “Life would be a lot easier without these added hassles.” I sometimes feel grief as I look down the road and wonder what our lives, and what our son’s life, might be like if things don’t change.

Do we share our grief? Occasionally. Amy is right when she states that, “In fear of creating a self-fulfilling prophecy for her child’s future, a mother may remain tight lipped….” If we tell someone ALL the ups and downs in our days, we feel that our child may be more ostracized than he already is. We may be setting him up to be the one the teachers and friends are always looking at as “the problem child” when in fact, that’s hardly the case.

But then there are moments of hope - almost tangible moments that I cling to ferociously! When it was time to write our son’s IEP, I went into the meeting feeling nervous and afraid. This was my first IEP meeting as a parent. I had attended others as a teacher. I had an advocate and another therapist on the call with me. I had friends and family praying for me. As I sat and listened to strangers planning my son’s therapy schedule, I found the nervousness being replaced by utter amazement: They were giving us MORE, in terms of therapy, than what they were legally bound to supply. We asked for a couple of extra things to be added, and they did. There was no fighting; there was no questioning of our abilities as parents. What we found was another group of supportive professionals who genuinely want our son to succeed! That gives us HOPE!

In our daily lives, we have the opportunity to dwell on a long list of things for which our son needs help. The list is overwhelming at times; the drives to therapy seem endless; the commitment seems exhausting. We have reason to “live in the valley” and feel grief and despair.

Or, we have an opportunity to cling to hope! We have an opportunity to present hope through times of challenge to those around us, while still living out a very real and at times, difficult, life. If we choose to focus on the grief, how does that help us? We end up sad, depressed, lonely. While the grief is real, and it’s valid to sit and work through it at times, we choose to cling to hope! We choose to believe that somewhere down the road, our son’s “normal” will look a lot like the “normal” of his peers. And how does that hope help us? It gives us strength to persevere through the day; it brings renewed energy and focus. Hope gives us the ability to keep moving forward!

{UPDATE, 2013}: Some of the big things that had caused us stress 2 years ago (first writing) are things we don’t have to deal with much anymore. However, as in a lot of aspects of life, when you outgrow one situation, you grow into a new one. With new situations come new issues to deal with. Thankfully we have a few more tools in our arsenal to help us deal with the new situations, but it’s still a long, sometimes difficult, growing process.

If you missed Part 1, you can find it here: “…relief upon the receipt of an autism spectrum diagnosis…“

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5 Things to Know about the Mother of a Child with Autism, Part 1

March 31, 2025 By Rebekah 6

This is the first in a series of 5 posts dealing with understanding a mother of a child with autism. The series is originally authored by Amy Fenton Lee, is being used with permission, and can be found at the blog for The Inclusive Church. As April is Autism Awareness month, I’ll be posting this series each Monday in April. I wrote these posts 2 years ago, and will update as needed.

Update for 2013:

This post is 2 years old now, and I’m so happy to be able to share it with you, most of whom are new readers. Sitting and thinking back through when I first shared this series reminds me of how far we come. And sharing it again reminds me of how far we still need to go - both in our family, and collectively, as a society that understands and helps people with special needs and those who care for them.

Update for 2012: I ran this series last April. We’ve made new friends this year - friends with children with special needs, and friends with typically-developing children. There are so many good points in Amy’s original post (see below) that I wanted to run them this year as well. I’m hopeful that this year they will be as helpful for others as they were for me last year!

Original Post from 2011:

As the mother of a special needs child, I am often searching for information, answers, direction. I recently came across a blog by Amy Fenton Lee, who writes for The Inclusive Church, a site with many tips for churches and parents with special needs children. Amy’s blog provides a lot of affirmation for thoughts that I seem to constantly have, and for feelings that Tim & I are dealing with on a daily basis. You can read Amy’s blog here.

Amy is currently posting a 5-part series on Mothers of Children with Autism, and that is what caught my attention. I read through the first two posts and felt as though I was reading about myself. With Amy’s permission, I am posting a few excerpts from her blog. You can read the entire post - and I would encourage you to do so. It’s very rich and meaningful.

Here are the parts that stood out to me, taken from part 1 on understanding mothers of children with autism:

“#1 She may feel relief upon the receipt of an autism spectrum disorder (ASD) diagnosis for her child.

While the autism diagnosis may be fresh, there is rarely shock for the child’s mother when a label is finally assigned to her child’s ‘difference.’ The time period between the first hint of a potential problem and the receipt of a diagnosis is at least several months, if not years.

During the diagnosis journey, at least one person in this mother’s circle has questioned her child-rearing abilities.

As much as a parent hates the idea of something being ‘wrong’ with their child, the diagnosis may actually affirm a mother for her intuition and parenting skills. Indeed her instincts were right…her child’s odd or even perceived oppositional behavior served as an indicator of his health (physical or mental), and not his heart.”

These are things that I have dealt with; things that Tim & I discuss on a daily basis. It is reassuring, to us, to know that we are not alone. Amy has conducted research with a number of families and has found that while the results do not always look the same from case to case, these are very real things with which mothers (and fathers) deal.

When our guy had all of his testing in December & January, and as we met with the team to go over the results, we knew the possibility of discussing the Autism Spectrum would be coming. And when it did, the psychologist who was presenting it to us seemed almost sad to have to tell us that he believes our son falls along the spectrum. I vividly remember saying to him, “John, I’ve been trying to tell people this for 4 years! You are not telling me anything new!” With that information, he was almost relieved to be able to tell us his findings. It affirmed, for this mother’s heart, that my parenting skills did not lack; that this child of mine does indeed have some issues.

The big question that Tim & I get is, “How can we help?” We have a busy household, with 3 kids and homeschooling and therapies for one of our guys and preschool for our daughter. We have a lot of our days planned out thoroughly - for our sake, and for our guy who needs routine. We have spent a lot of time trying to come up with answers to “How can we help?”, and the biggest answer is, PRAY. We need your prayers. We look very normal in public - at church, at school functions, at birthday parties. But with the “normalcy” comes the price of “crashing” afterward. It takes so much for Picasso to keep himself together that there is an immense “crash” after we’re back home. It won’t be this way forever, but for now, it is almost inevitable. Hence, the therapies.

How else can you help? Smile at us; don’t be afraid to ask how things are going - but be prepared for a real answer. We have no intention of being fake. Understand that there are good and bad days and if it seems as though we’re not paying attention if you’re talking to us, or if it seems like our minds are completely not focused in the moment, please extend grace - it’s likely that we’ve just been through a valley and are walking out of the forest. Most of all, know that we love our kids more than anything, and we bear a heavy load right now, to make it all work - the school, the different therapies, the friendships, church activities, work, household stuff. Our kids go through the same things your kids are going through, just with some differences in perspective.

We are amazingly blessed with supportive family, friends, children, siblings, and our church. We know this is not a road that we will walk alone, and we are grateful!

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