Signs and Struggles

When I sit down to think about the ways to explain some of MJ’s issues it is hard to know where to begin. You may hear or read some Autism “signs” and think to yourself “well my kid does that sometimes – it’s not unusual” (a common reaction). I understand what you are saying but this is different. All of us have a characteristic or behavior that could be in the description of a child with Autism – perhaps we even have two. What makes it Autism is the number of issues, levels or severity, and patterns in which they occur. I don’t know how to explain what we know about our son without you living in our shoes and experiencing it daily.

Ellen Notbohm (an Award-winning author and mother of sons with ADHD and autism) writes it beautifully in her article “Ten Things Every Child with Autism Wishes You Knew”. Below I have borrowed Ellen’s words to explain to you specifically some of the struggles MJ deals with on a daily basis.

My senses are out of sync.

This means that ordinary sights, sounds, smells, tastes, and touches that you may not even notice can be downright painful for me. My environment often feels hostile. I may appear withdrawn or belliger­ent or mean to you, but I’m just trying to defend myself. Here’s why a simple trip to the grocery store may be agonizing for me.

My hearing may be hyperacute. Dozens of people jabber at once. The loudspeaker booms today’s special. Music blares from the sound system. Registers beep and cough, a coffee grinder chugs. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can’t filter all the input and I’m in overload!

My sense of smell may be highly sensitive. The fish at the meat counter isn’t quite fresh, the guy standing next to us hasn’t showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they’re mopping up pickles on aisle three with ammonia. I feel like throwing up.

And there’s so much hitting my eyes! The fluorescent light is not only too bright, it flickers. The space seems to be moving; the pulsating light bounces off everything and distorts what I am seeing. There are too many items for me to be able to focus (my brain may compensate with tunnel vision), swirling fans on the ceiling, so many bodies in constant motion. All this affects how I feel just standing there, and now I can’t even tell where my body is in space.


Distinguish between won’t (I choose not to) and can’t (I am not able to).

It isn’t that I don’t listen to instructions. It’s that I can’t understand you. When you call to me from across the room, I hear “*&^%$#@, Jordan. #$%^*&^%amp;*.” Instead, come over to me, get my attention, and speak in plain words: “Jordan, put your book in your desk. It’s time to go to lunch.” This tells me what you want me to do and what is going to happen next. Now it’s much easier for me to comply.


I’m a concrete thinker. I interpret language literally.

You confuse me by saying, “Hold your horses, cowboy!” when what you mean is, “Stop running.” Don’t tell me something is “a piece of cake” when there’s no dessert in sight and what you mean is, “This will be easy for you to do.” When you say, “It’s pouring cats and dogs,” I see pets coming out of a pitcher. Tell me, “It’s raining hard.”

Idioms, puns, nuances, inferences, metaphors, allusions, and sarcasm are lost on me.


Listen to all the ways I’m trying to communicate.

It’s hard for me to tell you what I need when I don’t have a way to describe my feelings. I may be hungry, frustrated, frightened, or confused but right now I can’t find those words. Be alert for body language, withdrawal, agitation or other signs that tell you something is wrong. They’re there.

Or, you may hear me compensate for not having all the words I need by sounding like a little professor or movie star, rattling off words or whole scripts well beyond my developmental age. I’ve memorized these messages from the world around me because I know I am expected to speak when spoken to. They may come from books, television, or the speech of other people. Grown-ups call it echolalia. I may not under­stand the context or the terminology I’m using. I just know that it gets me off the hook for coming up with a reply.


Picture this! I’m visually oriented.

Show me how to do something rather than just telling me. And be prepared to show me many times. Lots of patient practice helps me learn.

Visual supports help me move through my day. They relieve me of the stress of having to remember what comes next, make for smooth transition between activities, and help me manage my time and meet your expectations.

I need to see something to learn it, because spoken words are like steam to me; they evaporate in an instant, before I have a chance to make sense of them. I don’t have instant-processing skills. Instructions and informa­tion presented to me visually can stay in front of me for as long as I need, and will be just the same when I come back to them later. Without this, I live the constant frustration of knowing that I’m missing big blocks of information and expectations, and am helpless to do anything about it.


Help me with social interactions.

It may look like I don’t want to play with the other kids on the playground, but it may be that I simply do not know how to start a conversation or join their play. Teach me how to play with others. Encourage other children to invite me to play along. I might be delighted to be included.

I do best in structured play activities that have a clear beginning and end. I don’t know how to read facial expressions, body language, or the emotions of others. Coach me. If I laugh when Emily falls off the slide, it’s not that I think it’s funny. It’s that I don’t know what to say. Talk to me about Emily’s feelings and teach me to ask, “Are you okay?”


Identify what triggers my meltdowns.

Meltdowns and blow-ups are more horrid for me than they are for you. They occur because one or more of my senses has gone into overload, or because I’ve been pushed past the limit of my social abilities. If you can figure out why my meltdowns occur, they can be prevented.

Remember that everything I do is a form of communication. It tells you, when my words cannot, how I’m reacting to what is happening around me.

My behavior may have a physical cause. Food allergies and sensi­tivities sleep problems and gastrointestinal problems can all affect my behavior. Look for signs, because I may not be able to tell you about these things.


Love me unconditionally.

I didn’t choose to have autism. Remember that it’s happening to me, not you. Without your support, my chances of growing up to be successful and independent are slim. With your support and guidance, the possibilities are broader than you might think.

Three words we both need to live by: Patience. Patience. Patience.

View my autism as a different ability rather than a disability. Look past what you may see as limitations and see my strengths. I may not be good at eye contact or conversation, but have you noticed that I don’t lie, cheat at games, or pass judgment on other people?

I rely on you. All that I might become won’t happen without you as my foundation. Be my advocate, be my guide, love me for who I am, and we’ll see how far I can go.

These are just some of the things that we have discovered in MJ and we live with daily in our home. It’s not everything – but it’s a great start and I love the way she wrote it from the child’s perspective. So can I ask you a favor? Next time you are in a grocery store or a park and you see a parent struggling with a child – can you say a little prayer for them?…they just might be struggling like MJ and our family. 

If you are interested in the article “Ten Things Every Child with Autism Wishes You Knew” by Ellen Notbohm in its entirety it can be found here.

Intervention & Understanding

When we first started noticing things with MJ before he turned 3 years old we were told by many that he was “quirky” and just a bit “different”. Finally after so long I realized that although these people had good intentions and were trying to be encouraging – I needed to follow my mother’s intuition that God gave me. So, when MJ was 3 ½ we took him to see his pediatrician to discuss our concerns. This doctor had not even known MJ that long due to MJ’s previous doctor leaving the practice a few months prior and he stepping in to take her place. He asked us a few questions and talked to us about the different possibilities of issues/diagnosis. The doctor was actually able to observe some of MJ’s odd behavior in the office.

I will never forget that day in the exam room over a year ago in June 2011. The doctor was very sensitive to our concerns, and cautious about what he said and how he worded things. I can still remember crystal clear the doctor watching MJ out of the corner of his eye while speaking with us. It was written all over his face – he was concerned – even looked a bit heartbroken for us knowing what the future could hold. Ultimately he completely validated our concerns and recommended MJ be evaluated by a Development Pediatrician for an Autism Spectrum Disorder. Something else that stuck with me was his words in an attempt to be encouraging “Kudos to you as parents for catching it so early. Most kids don’t get diagnosed or the help they need until they are a few years into school. You guys are great parents for being so tuned in to him. Early intervention is key”. Knowing what I know now – sometimes I have to wonder are children slipping through without help due to their parents “not noticing” or is it because the parents hit brick walls and their concerns are dismissed, cast off, or even convinced they are bad parents? No one knows their child better than the parent and I find it hard to believe that so many children are diagnosed at a later age simply because “it wasn’t noticed”.

Autism can progress as children get older and the earlier they can get help – the better off they are for a good future. I almost scoff at the term “early intervention” knowing what I know now over a year later. The experts say early intervention is key to helping an autistic child - but yet it takes over a year on a waiting list to be evaluated for a diagnosis. The experts say early intervention is key – but they make you jump through 20+ hoops to get the help your child needs. The experts say early intervention is key – but they severely limit what they do for your child and refer you around in circles trying to cast you off on someone else’s organization trying to save their own time and budget. I don’t want to sound ungrateful or resentful – for goodness sakes our family is still towards the beginning of this process. All I am saying is that my eyes have been unbelievably opened to the issues and gaps our system has with taking care of these precious kids. It breaks my heart.

We have learned in so many different ways how early intervention is key. Unfortunately we have learned through hearing of others struggles. God has placed people in our lives recently to share their stories with us. Most of them did not get early intervention for their kids, either due to late diagnosis, or the services just were not readily available. There are stories of two particular precious children that really engraved on my heart recently. One of them completely slipped through the system and didn’t get the help he needed – and now as a young adult he struggles with drugs, wrong crowds, and is in and out of jail – all because he was not offered the services he needed to help him learn the tools to cope with his condition to get through life. The other sweet child barely got help in time. Now a young teenager – he slipped through the system and got a late diagnosis a few years after he was in school. His parents struggled for months and years to get him the help he needed – and at one point this child even considered suicide.

There are so many instances where a parent may share a concern or explain to a loved one what is going on with a child and it gets dismissed. Some of my favorites (sarcasm) that are personal experiences I had sharing my concerns about MJ – “But he is so smart” – “But he is so happy and fun” – “But he talks so well”. The tired, frustrated, and end-of-my rope mother in me is left thinking “so people think in order to be on the Autism spectrum a child must be dumb, or sad / depressed all of the time, or non-verbal”. It leaves you feeling sad for your child, misunderstood, and completely and utterly alone. Listen – I know people love our family and love our children and want nothing but the best for us. I understand that people want to be encouraging, or possibly caution others from falling into the horrible trap of “hypochondriac” mode of self-diagnosing or self-treating and over-reacting. I get it, and I appreciate it. I once was the mother on the other side who didn’t understand why all of these parents felt they had to be such “advocates” for their children. Now I totally get it. I get both sides – and I see the gap.

That is why I am sharing MJ’s story. That is why I write what I write. Autism needs a voice. I want to bridge that gap between the mother who’s been there advocating for her precious child and the mother who looks from the outside going “what in the world is she doing all of this for I don’t get it”? What better way to learn and find out then to read about the personal experiences of a family who is there?

My goal is to write more frequently. I want to promise a set schedule of posts but in all honestly our lives are not in a place where I can do that yet. We are still finding our balance. I don’t want to write so often that you lose interest in my posts because it takes up too much of your time – but I need to write often enough that you do keep interest in our story – so hopefully it can touch the life of you or someone else you know.

This week you will see posts about some of the typical struggles of children with Autism and why they are often disguised. I will also share with you some exciting things that we are experimenting with that may help MJ with one of his daily struggles. We’ll give you updates and news as it comes in hopes that our story will help others somehow, some way, for some reason. Finally – we will share with you how our faith gets us through – because with God in our lives we can find direction, peace, and even joy in these circumstances.

Stay tuned…and God Bless.