Grateful for Well-Enough

A few weeks ago I spent the day with my daughter in the emergency room. She is 22 years old and her blood pressure was 190/130. Yes, I wrote that correctly—190/130. Thankfully medication brought it under control, but since then our focus has been trying to discover the source of the problem. How quickly life and perspective can change. We discovered the high blood pressure at a routine visit to the dentist on a Monday. That Monday I was thinking about a college my daughter might attend, and by Wednesday, of medical procedures she might undergo.

Last week, after many doctor’s visits, blood tests and scans, I needed a good cry. It came when I went to bed. As I cried, I thanked God for keeping Madeline safe as she walked around like a vascular time bomb—primed to explode at any time. I thanked him for her sweet and gentle spirit, kind heart, and sense of humor. God knows my previous requests on her behalf to overcome chronic fatigue and anxiety. But that night, I told him it was okay, that I was thankful for things just as they were.

WHAT IS IT THAT MAKES US PEDAL BACKWARD IN THANKSGIVING WHEN WE ARE FACED WITH NEW CHALLENGES? DO WE SPEND MORE OF OUR TIME WANTING BETTER FOR OUR CHILDREN INSTEAD OF BEING THANKFUL FOR WHAT IS ALREADY GOOD?

Some of that is natural—we want the best for our children. And some of it is that we are trying to meet expectations set by ourselves and others. In my case, my kids are doctor’s kids. There are expectations for them to be well-spoken, well-educated, well-groomed, and just plain…well.

But life happens—and kids are born with autism (my other daughter) and they are gripped by anxiety and chronic fatigue. And when our friend’s kids go to college and find jobs, ours struggle or dabble in those things—with baby steps. For many years I have been thankful for baby steps, but now I’m also thankful for mishaps that have not happened, illnesses that have not struck, addictions that don’t exist, and abductions that never occurred. I will be content with autism, anxiety, occasional depression and chronic fatigue. I will be thankful for girls that get along better than ever. I will even be thankful for cats and dogs who constantly cover my furniture with a layer of fur. They have brought my children joy and comfort—what’s to complain about?

And get this (even though it’s a bit off-topic)—Just before my daughter and I went to the ER, my ophthalmologist husband brought Madeline’s beloved dog into his human clinic to get a close look at the dog’s infected eye. I’m thankful that he and his Harvard-trained partner were willing to wrestle a border collie/lab for an eye exam. Can you picture it? Brown dog—tail wagging—border collie busy–in an ophthalmic exam room. Who does that but a loving father? It was a weird day on all accounts.

The beauty of weird days is that they make you yearn for ordinary days—even ordinary days that are not perfect—and sometimes downright difficult or almost unbearable. I know—I’ve been there. When do we decide our ordinary days are not acceptable? If pain or violence are involved, they are probably not. It’s the in-between days that keep us stumped. Are those days well-enough? When do we accept a situation and just be thankful for the good– and for the bad that hasn’t happened? I don’t know. It’s very personal.

NONETHELESS, THE LESSON I LEARNED OVER THE PAST FEW WEEKS IS THAT SOMETIMES WELL-ENOUGH IS ENOUGH. IT’S IMPORTANT TO BE THANKFUL FOR WHAT YOU HAVE NOW BECAUSE LIFE CHANGES ON A DIME.

Just so you know, my daughter is doing better now that her blood pressure is down. She is not having the headaches that plagued her for weeks. Tests are underway because we don’t yet understand the problem.

Well-enough. I’m grateful for it.

When Professionals Add Stress to Parents of Special-Needs Kids

As a special- needs parent let me be clear that my overriding feeling is gratitude toward professionals who help kids and families with mental health challenges and developmental disabilities. I have a Ph.D. and my husband is an M.D. so I understand the challenges on both sides of this issue. However, I witness or hear from parents too often that professionals lack respect and sensitivity towards them. Unfortunately, this wounds families at a time when they usually need the most support. Next time, I’ll blog on some of the fantastic things I’ve seen professionals do—but today I’m a writing as a parent advocate. On behalf of many families with more dramatic stories, I’m telling my story to lend some support and to build some awareness of the issues.

Before I begin, I need to say that I know from a professional perspective that concerned parents can be intense, emotional and may not always think clearly when it comes to the well-being of their children. Professionals have to formulate a differential diagnosis and make a quick assessment of the child’s environment with little information on a first visit. This is difficult. I once called my husband while he was away at a medical conference because our 1 year-old had fallen down the stairs and I was hysterical–especially because there was blood on the stair railing and I was sure our daughter had a major head injury. I stayed up much of the night doing neurological checks. She made it through the night. When my husband came home the next day, he quietly pointed out that the blood on the railing was actually dried cough syrup. Not sure how he would have assessed me that day had I been a parent in his medical office for the first time.

That said, I’m usually a very reasonable person.

My story begins when my oldest daughter was two years old. After months of feeling concerned about her, I took her to see a doctor. Here’s what happened within the first two years of this appointment:

First Doctor’s Visit

The developmental pediatrician walked in the room to see Katie who quickly became anxious. To decrease Katie’s anxiety, I showed her toys and asked her questions I knew she could answer—like the color of the dress on the doll (pink), etc. I didn’t know it yet, but Katie had trained me to soothe her. That happens to moms—they learn and adjust their behavior to meet their child’s needs. Katie knew advanced colors already—it was one of her autism strengths. Colors are predictable—they don’t change—so she liked them. However, the doctor accused me of pushing advanced learning on my two-year-old and wrote in the chart that I was a Ph.D. candidate (that part was true) pushing my child toward pre-mature academic success (colors?)(not true). (Message: Mom is source of anxiety in child). She was wrong, but its ok. I could see how she might misinterpret, and high-functioning autism was not on the radar as much back then. (On the other hand, as a deeply concerned mother on one of the most stressful days of my life, I could have used an encouraging word).

First Treatment

After a follow-up visit, the doctor diagnosed Katie with anxiety and suggested play therapy for her. I took Katie to therapy for a few months with a psychologist. Later I read in the chart that I had improved my play skills after this intervention (Really? Was that a goal? )(Message: If Mom played better, child would be better).

Another day as I spoke to this psychologist in her office, I stood up and bounced my 3 month old as she started to fuss. The psychologist yelled that I shouldn’t stand up when my daughter fussed to comfort her because I was coddling her. I should only comfort her while sitting down and then she could cry if that didn’t work. (Weird. Did she really want my baby to wail in her office?) (Message: Mom is not very good at her job).

Shifting Diagnosis

I still thought that something was missing in the diagnosis because Katie was losing social language previously acquired. I asked the psychologist if Katie might have high-functioning autism. The idea was quickly dismissed. (A few months later, Katie was diagnosed with autism by a neuropsychologist who spend 4 hours observing and testing her in our home. (Which diagnosis would you trust?)

After our move to California, we visited a well-known specialist for a confirmation diagnosis required by the system. This doctor was in the middle of a family crisis (I empathize with that) but after observing Katie for 5 minutes, she refuted the autism diagnosis on the spot because Katie was “playing with her sister.” (It was a moment of parallel play). The records of the visit were strangely lost (thank you, God!) but I feared for months that we would lose all Katie’s services over that impulsive diagnosis.

Getting Services

Within the year, I had to defend that diagnosis before an IEP team who thought Katie functioned too well to have autism. Several years later the IEP team leader admitted and felt badly that the team treated me as if I were delusional. By then, I had founded a non-profit organization to teach social and emotional skills to kids on the spectrum. (At least as a delusional mother I had done some good in the world).

Services in Place

Services began but the speech pathologist became upset with me because I made a suggestion to supplement Katie’s therapy. This offended her because she “was the professional”. I apologized but told her through tears that I had to do as much as possible because I would live with the consequences if Katie didn’t make good progress, not her. (She seemed to consider this for the very first time—how much Katie’s progress meant to me).

This is a small sample of stories I could tell about professionals who hindered as much as they helped. Moms and dads, have you had similar experiences? How did you feel? Did you waste hours second-guessing what you knew about your child? Were you unjustly suspected of child abuse or neglect? And on another note, does anyone check in with you to see how you are doing? Do you have a name at the doctor’s office–or are you called “mom” or “dad” as if you have no skills, life, or personality aside from being a parent?

It’s ok. Really. I am not mad nor do I carry any grudges. I tell my story because sometimes parent input is still dismissed and parents are blamed for problems they didn’t cause. There is a strong emphasis on the effects of trauma right now which brings child abuse to everybody’s mind. Overall this is good, but I’m pretty sure that some parents are overly scrutinized and less supported because of this trend. I’m also concerned that parents are not taken seriously when they have suggestions for their own child or for their communities. I spent years on the mental health advisory board in my county and saw competent parents ignored or marginalized–their hard-won wisdom wasted. It’s a shame.

I guess this blog is partly a call for system change, but mostly it’s a shout out to parents—to guard your hearts and trust your instincts. We need M.D.s and Ph.Ds. to diagnose and give us a direction to follow, but they will come and go in your life. Listen to them, but get a second opinion when you are unsure because you know your child best. Above all else, listen to God’s voice because He is constant and knows the child He created.

Finally, There’s no need to feel inferior because you are “just a mom or dad”. Keep your confidence. God gave you your child for a reason. You have done one of the most difficult things in life—watched your child suffer, grieved deeply, secured appropriate therapy while trying to keep dinner on the table and a smile on your face. You and God have got this together. Bind up your wounds, carry on and seek God’s opinion above all else.

Finding Hidden Blessings in Special Needs Parenting

“Show Eddie the ball!” This is a frequent exhortation around our house because Eddie, our 12-pound terrier mix, often loses his ball while chasing it around the yard. So Grace, our brainy border collie/ laborador retriever, is often tasked with helping her brother find it. She listens to our command, perks up her ears, and immediately finds the ball and nudges it with her nose into Eddie’s view so he will see it and retrieve it. Often Grace will just do this on her own without our command. She picks up her own ball first and then races back to show Eddie his. Sometimes she has to point out the ball several times before Eddie retrieves it. She will patiently show it to him again and again, until he finally finds and gets the ball. It’s a sweet sight.

This scenario reminds me of what we do as parents with our children, again and again. And, in a spiritual sense, it’s what God does for us (but I’ll get to that in a minute).

In a physical way, we help our kids pick up or find “the ball” when they drop or misplace it.
They forget their lunch, lose their homework, fight with their siblings, and throw temper tantrums– dropping the proverbial ball over and over. Children with neurobiological challenges such as autism, ADHD, anxiety, depression or other conditions may “drop the ball” more often. They may seem sloppy, unorganized, forgetful, have poor social skills or difficult behavior. We need to patiently point out better ways of handling problems or more efficient ways of doing things. They may not follow our directions for a variety of reasons related to ability or will.

I know this isn’t easy. It is hard to be patient, day after day, pointing out the same thing over and over, especially when our kids seem to ignore the good advice or opportunities we present.

It can make us want to blow– and sometimes we do.

That given, still we are called to extend grace to our kids in spite of the challenges. It’s then that we need to step back and look again for “the ball” that God is showing to us. If we pay attention, we will see that He points us to His wisdom, blessings and rest.

Sometimes we don’t receive the blessings He gives because we are too busy running off in a direction we think is best. And, sometimes the blessings are hidden among the challenges in our lives.

Over the years of parenting children with special needs, some of the blessings God has shown me are that I can have peace in chaos, hope in disappointment, and even joy while waiting for situations to improve. These things are not easily found. God has had to show them to me again and again until my eyes were trained to find them myself.

I missed out on some of the peace, hope and joy on many occasions early in my days of special- needs parenting. I was too busy running around willy- nilly trying to find the blessings through my own means. Just this week I faced disappointment, pain, and unfulfilled dreams. I spent some time scanning the grass and first saw the weeds instead of the “ball of blessings”.

But now I know that the ball is there. In time, like Eddie, I will find it because God’s Grace will keep pointing to it again and again.

Soon we head into the season where we give thanks for our blessings.

Even if you cannot always clearly see your blessings, know they exist and keep your eye out for God’s Grace to show you.