Category: Parenting

As we move through Autism Awareness Month, I have to say that although all the people impacted by ASD have been at the forefront of my mind, it is the parents that have really been in my thoughts.  Maybe it is because we just went through a big therapy check up and an exhaustive look at the progress and the areas needing focus.  Maybe it’s because I was reminded of how tiring that process can be, and frankly we’ve all looked a little tired lately.  Indeed, I have found myself thinking about my fellow autism parents often. One of the blessings of getting to know other parents of children on the spectrum is that you can lean on each other, and you care about their children and their journey just as you do your own.

Autism Awareness Month is about bringing attention to the kids and adults living on the spectrum, furthering understanding of some of the symptoms that impact them, and encouraging others to include these kids and adults in their world.  It is also about supporting and embracing the families impacted by this condition.  When you find out your child is on the spectrum, it sets into motion a triage of sorts to determine how ASD is impacting the child.  I often refer to Jim’s symptoms as headwinds, but sometimes I have to remind myself that while it may be a headwind or an issue for us or the world around us, Jim probably does not see it that way.

For example, the stimming is probably the best thing in the world to him because it provides relief to that pent up nervous energy (as in nervous system), but at his age, it is difficult for him to see how it can be detrimental in the course of the day.  His brain is telling him that it is needed – whether it is visual stimming with a stick, running back and forth in the kitchen, or humming to himself – and he has an undeniable compulsion to follow his brain’s instructions.  Stimming is the one autism symptom for which no one can seem to provide an explanation (or a solution), and while we have notched progress against it as Jim has learned to exert more control over it, it remains our most dominant symptom to target.  In the beginning, I remember being focused on eliminating problem issues or adding skills through therapy, and no doubt he has done that with a long list of items.  As he has gotten older, I have come to view some of his symptoms more as just a part of the wonderful gift he is.  That’s a change in perspective, but really it is a pivoting of my understanding of him. It’s an evolving understanding and certainly anew phase for us.

I am admittedly very protective of Jim, and I am careful about how I write about him and autism because I never want to be misconstrued for thinking something is “wrong” with him. Autism introduces many challenging tendencies, behaviors and processing issues, but the “challenge” in them is how it impacts your child functioning at home and out in the world day-to-day. There is nothing “wrong” with the core of who the child is. The battle, I have always thought, is fought in order to unlock the true potential of the child because they are too young to do so themselves. That’s why I refer to it as a fight or a journey. When they are really young you see glimpses of it….a budding sense of humor, a sweet disposition, a keen intellect. But autism attempts to cover all that, or at least, it tries to do so.

As Jim has gotten older, I have continued to hold onto him tight. When he was much younger it literally felt like I was in a tug of war for him with autism. Here was this bright light versus this thing that no one really understands that was trying to take him from me. That is still the scariest part – the unknown future. You get that with typical kids too, and parents can get lulled into complacency thinking everything will just always be just fine with their kid. And it may work out that way and that’s awesome if it does, but this mom is always on edge to one extent or another. Vigilant for the next challenge to come. It’s just how it is with life on the spectrum, but also with my typical kids too. I try to leave it up to God and have faith that everything will work out, but truly resting in that is a challenge like no other.

As we have gotten older, the set of challenges has changed, and it’s gotten scarier as we have progressed out of therapies. We still have some on board, but they are somewhat elective. It’s scary to look forward at the prospect of full independence in a world that is tough – even for typical kids – and full of people who just don’t understand and don’t want to understand. The angst and worry are real, and the ability to craft solutions within the context of educational environments becomes more complex and less clear. You see, that’s my precious boy, my gift from God, and the mom in me wants to make sure he’s okay. That’s it; it’s really that simple.

So this post is really for all those parents out there at whatever stage of the journey. I know it can be tough, confusing, scary, and lonely. I know you may feel lost, confused, and beaten down some days. I know you are tired of having to become an “expert” at topics and treatments and therapies because you cannot farm that responsibility out to others. I want to encourage you to keep fighting hard for your precious boy, your precious girl, your gift from God. Draw strength from Him. Draw strength from your fellow autism parents and all those awesome friends and family that wrap you up to support you and take the time to care. We are very aware of autism everyday. It’s a part of our world and always will be. As we progress along the journey, we appreciate the little quirks and gifts that come from autism too. And a part of us embraces that for the different view that gives us to see more of our child’s colors (and those of our other children too). It’s a prism and a perspective that has made me a better parent and a better person, and in that way, I am somewhat grateful for Autism. Maybe that is part of growing into life, but whatever it is, I hope that other parents on the spectrum can find their footing along their own journey. Know you are not alone in your experience….you are never alone. And your angel is ausome. 💙🧩

Today is Jim’s birthday – turning the big snowman – 8 years old.  It’s hard to believe that 8 years have flown by so quickly, but here he is changing and growing faster than we ever imagined was possible.  As his parents, we have of course tried to teach him a lot of things along the way, but the truth is that Jim has taught us a whole lot more than we have taught him in these last 8 years.  As his mom, I am forever grateful for what I have learned over these years and the growth it has brought in all of us over the years.

Jim has been a scrappy fighter from the beginning.  I was sick with preeclampsia beginning at about 31 weeks, and I spent about a week and half on hospital bedrest until the doctor finally made the call to deliver at 35 weeks and 2 days.  So Jim arrived, but he had the typical breathing issues that white male babies often have at that point, and he was whisked to the NICU shortly after delivery.  His 1 minute Apgar score was 6, but he quickly recovered to a 9 before they rushed him up to the NICU.  I would not see him for 2 days.  My husband always mentions how well I did handling the fact that I couldn’t go see my baby, but truthfully, I was pretty beaten down and scared at that point.  I knew he was in good hands and doing better with every hour, and I knew I had to be patient while my body got a handle on things so I could go see him.  I still remember finally getting into a wheelchair and going up to see him for the first time.  He was so tiny – just 5 lbs 8 oz at birth – and he was slightly jaundiced.  So when we came into the room, he was laid out on his back in just a diaper with his arms and legs stretched out with those dark glasses over his eyes with that sleeping infant grin on his face.  He looked like he was sunbathing.  I remember just touching his hand and arm and not wanting to disturb him.  I wanted to hold him, but I didn’t want to mess anything up with all the tubes and IVs.  I did get to hold him later, and I remember not wanting to let him go and certainly not wanting to leave him there in the NICU.  As anyone who has had a NICU experience knows, it’s really easy to get into the NICU, but it’s hard to get out.  Jim made quick work of the list of requirements for discharge, and early on we learned not to underestimate this kiddo.

Jim has taught me a lot about perseverance and resilience. I thought I knew about that before he came into our lives and our journey with autism started. I now know I didn’t know the half of it. This kid has overcome so much that left unattended could have had long-term negative implications for the rest of his life. He’s completed countless hours of therapy that involves hard work and concentration whether you are talking about speech, occupational, or ABA therapy. From the get-go, he has always had a good attitude and work ethic with little protest along the way. Whenever I get complaints about homework from his older brother, I sometimes remind him of how hard Jim works on many days attending school all day with therapy mixed in, additional therapy on a couple of days a week, and coping with sensory symptoms that impact him from the moment he opens his eyes in the morning to the minute he closes his eyes to go to sleep. It is this perseverance and resilience that I know will be an integral part of his progress against the effects of autism.

Jim has reminded me since he was very little that there is always room for humor no matter how difficult the circumstances may be. In fact, his humor has been a constant reminder to us that in spite of his autistic symptoms, he is very much there with a sharp wit, keen intellect and imaginative sense of humor. We love to laugh and be silly together as a family, and Jim is very much a part of that dynamic.

So happy birthday to this boy that has been such a blessing to us as our son. Happy birthday to a boy that is a loving brother to his siblings. We all have your back, and we can’t wait to see what you accomplish next. We love you more than you will ever know.

Happy birthday buddy. ❤️

I have had a number of conversations in recent weeks about our journey and the order of events.  It has led to a lot of reflection about the beginning of it all and just how difficult it was to get our arms around what was happening.  When I see other parents going through the early stages, especially around 2-3 years old, I know where they are.  There is a lot of bad advice that comes mixed in with the good stuff, and the bad advice is not necessarily coming from someone with bad intentions.  The bad advice can come from well-meaning family and friends who are trying to make you feel better, teachers who do not want to engage parents on symptoms they see, doctors and therapists that suggest a ‘give it time’ approach, and the list goes on and on.  ASD is a deceptive disorder that evolves during the critical early development of the brain, and when you wait and see in any way, you have wasted valuable time to intervene and address symptoms.

When we went for our first part of our evaluation with the Angel Program, I dropped Jim off and went to a Starbucks nearby to wait until he was finished.  I had a book with me called The Parent’s Autism Sourcebook by Kim Mack Rosenberg.  It’s a good resource book if you are just starting to understand what ASD is and the various approaches available to therapies.  Most of the book provides specific providers of those services.  I got the most help from the first 40 pages and more specifically a section entitled Early Signs & Symptoms.   As I have mentioned, our symptoms came on subtly and slowly, and I had looked back again and again trying to figure out what I had missed.  Kim provides categories of symptoms, and when I reviewed the Communication Symptoms, we had 5 out of the 6 and had for some time.   I reviewed the Social Symptoms, and while these had followed the Communication Symptoms, we had 3 of the 5 listed.  Other behaviors listed, I recognized as well.  I texted my husband and said, “if I read one more symptom that someone should have pointed out to us as being associated with ASD, I’m going to throw this book through the window.”   I was angry because we had been asking and asking and asking for advice, help, and direction, and we just could not get it.  I knew that I had to let it go and move forward, but I’ll admit it was tough.

So for parents that are in that spot right now, read, study, and learn about ASD.   Also recognize that there is no playbook for lining up evaluations, therapies, and options for school.  You are going to get a lot of input that you have to process and decide what is best for your child.  If you have even the slightest concern, consult your pediatrician for a referral to a group that can help.  If the wait time is too long, hop on the list and pursue an evaluation with a provider that is relevant to your concerns, which will normally have a much shorter wait time – sensory seeking behavior (OT), social (ABA), language/communication (Speech/Language).  And please, please, please, do NOT be scared of the label.  It’s more important for you to know exactly what you are fighting than what it’s called.  Also recognize that if ASD is in fact your correct diagnosis, that it can impact the insurance coverage for therapies.

Keep in mind that ASD is like a chameleon: it changes with different environments.  You  may not recognize that a meltdown at a birthday party could have been the large number of people (social), the loud noises at the tiny birthday room at the bowling center or skating rink (auditory sensitivities), and the demand of a large group of people trying to interact with your child (language/social).   You may not be up the curve yet on recognizing when your child is overtaxed, and you need to punch out of the activity and head home to a quiet space to avoid a meltdown.   You may not see other difficulties emerge until they are in a school setting where some structure is introduced into their day.  You can only keep their environment contained for so long before they have to enter into a more diverse social and environmental existence.  When they do, you may see symptoms pop up out of nowhere – like a switch.

Speaking of pop up symptoms, it’s worth mentioning that battling ASD is like a game of whack-a-mole.  You will find yourself addressing one symptom and making progress only to wake up one day and find two other issues that were not there the day before.  Old symptoms love to make comebacks.  This can be especially frustrating when your child is working hard to overcome something, and the progress unlocks more challenges.  Don’t get me wrong; progress is ALWAYS good, but it can be a double-edged sword.  As a protective mama bear, I get frustrated for my boy.  The good news is that over time you feel a bit more equipped to help your child.  The longer you are at it the better you are at recognizing symptoms and understanding your child, and as a result, your relationship becomes stronger.

One thing that should never get lost in all of the challenges presented to parents navigating the spectrum is the wonderful gifts possessed by their kids.  I have not met one child on the spectrum that does not have multiple awesome gifts.  I know this is true about all kids – they all have gifts to give this world.  But kids on the spectrum tend to have symptoms that can mask or hide those gifts.  For example, while a lot of kids with ASD have trouble understanding emotions, I have met many who are really funny and love to be silly and tell jokes.  I have my very own resident comedian!  The subtle nuances between angry, frustrated, and irritated or sad, hurt (feelings), and disappointed can be difficult for kids on the spectrum to parse out.  Many kids with ASD can have cognitive difficulties that can make recalling information difficult, which makes learning a slower (not impossible) process.  It may take a few tries, but once it clicks, it’s in there.  Other learning activities are super easy, especially more concrete, less abstract concepts.  The point here is that many kids on the spectrum are wicked smart; they just have a different way of learning.

There’s a reason they call it a roller coaster ride – there are a whole lot of ups and downs.  A breakthrough can make you feel like you have had the best day ever, and a setback can be like a punch in the gut.  But there is no question at all that they are worth every step to progress.