My dishwasher's possessed

one mom's attempt to find humor in the chaos

Down the Rabbit Hole Again

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rabbit and chess in deep hole toward the sunlight. creative concept

Each year as April and Autism Awareness month rolls around, I find myself in a strange position of wanting to write something about my family’s experience of dealing with a range of developmental and learning disorders. At the same time, I feel that I don’t really have the right.

All three of our children have received special education services for a range of developmental and sensory issues since they were all babies. But not one of them has ever had the official autism diagnosis.

I want to feel as if I fully belong to a group, to have a platform, and share my story flanked by the many other families who are riding the very strange roller coaster of dealing with a disorder that can wreak havoc one minute, yet bring such joy and support the next.

My family has always been warmly welcomed by the Autism community, and I appreciate that. But I sort of feel like a fake because at least at this point, all three of my kids don’t really fit any specific criteria or diagnosis.

Even our daughter, Lizzy, who has very significant and life-altering special needs, has no real diagnosis despite having had five separate MRIs that show major damage.

My family is like a lot of other families with children in the diagnostic limbo of the “neuro-diverse.”  Going to specialist upon specialist with a Chinese menu of symptoms–one from Column A, none from Column B, two from Column C, and one from Column D. Where do we fit in? How do we know we’re doing the best for our children. What if we’re missing something?

I was thinking of this on Wednesday, when I was with our youngest child in the emergency room and kept noticing the signs that announced April is Autism Awareness month.

We were in the ER because Peter started suffering a tic Tuesday night before he went to bed. At first I thought he was just playing around. He is a wonderfully imaginative and somewhat eccentric child, and I could see him trying something like this just to see what it would feel like, or what kind of reaction he would get.

Peter is the poster child for neurodiversity. He has some symptoms that might suggest Asperger’s Syndrome or a light autism diagnosis. But he doesn’t fit all the criteria. Some of his behaviors fit into the ADHD category, and others in the sensory-processing disorder category. He also exhibits signs of being gifted.

This has made getting him the help he needs a challenge, and I’m always worried I’m missing something. My biggest desire for all three of my children is that they each live up to their potential and lead happy, productive lives.

I tried to keep calm as I was watching these new symptoms. After all I’m a pro at dealing with scary things with my kids. But by Wednesday afternoon, I knew something was wrong. Peter uncontrollably shook his head back and forth. His arms flailed. His eyes blinked and rolled back in his head. His tongue was spastically sticking to the inside of his cheek.

“Mom why can’t I stop moving my head? I’m getting dizzy.”

I felt horrible for him. We went to his pediatrician, who sent us to the emergency room at a specialty hospital for children.

Once there a parade of professionals and doctors tried to figure out why my kid was suddenly suffering what we feared were seizures.

I patiently answered the same questions over and over from each new doctor–keenly aware that they were only trying to help. I kept thinking how grateful I was that my husband had a good job, and that we had great insurance. I was so thankful that my mom could come with me, so I didn’t have to do this alone, and that my dad could stay with my other kids until Joe got home.

I thought of  all the other families who weren’t as fortunate as we were. Who didn’t have the resources to go to good doctors or hospitals. I remembered this to keep me grounded. Because there were times when I just wanted to scream: Won’t somebody please tell me what is going on with my kid?

Ultimately it was decided to admit Peter to the hospital for some further tests and observation. Some of his blood work came back suggesting an undiagnosed strep infection. He was scheduled for an EEG in the morning, and we were moved to a new room which brought with it a new parade of professionals and another round of questions.

When we were finally released Thursday afternoon, we had far more questions than answers. The next few weeks will bring appointments with new doctors and more tests.

Once again one of my kids is in diagnostic limbo. And I’m tired. Tired of searching for the right doctor. Tired of tests that say it’s one thing only for another test to say it’s something else.

I will survive the unknown by focusing on what I do have and relying on my friends who have gone before me.

I would be lying if I said I wasn’t scared for what the next few weeks and months may bring. I want the best for my son, and I want him to have a happy life. I know that  by sharing our story, it may mean that at least one other family may know they’re not alone. And isn’t that what these awareness campaigns are all about?

 

 

Comments

  1. Janine Huldie says

    Aww, Kathy, I have been thinking about you with Peter and all that you went through last week. I only hope that you will get some clear cut answers very soon and until then I am keeping you in my thoughts and prayers. Seriously, can’t even beging to imagine, but just know I seriously have you in my heart right now!
    Janine Huldie recently posted…Investment Potential Of St AntonMy Profile

  5. Marsha burgess says

    I remember when my middle son, Peter, first came down with symptoms of Kawasaki’s Disease. I was in London with my sister, and my husband called me to come home — NOW. Robert is the calmest person I know (completely unlike I was then), so the panic in his voice terrified me. But not as much as seeing my 11-month-old, his hands and feet peeling, little cheeks bright red, reaching for me and crying, “Momma”. When I finally brought him home 2 1/2 months later, I was still scared of everything….because they have no idea what causes this and it *can* have lifelong repercussions. So, honey, own those fears. But know this: my little boy is now 25 years old, 6’2″, and has been a tower of strength for many people, myself included. Get as much info as you can, try to make your best decisions, and keep being the wonderful advocate for your son, just as you’ve been being. There is nothing more comforting (or believed) to a child than his mother’s reassurances. Hang in there and know that you’re not alone. There are people holding you and your child in their hearts, even as you face this latest event. Sending you and your little one all my positive thoughts and waiting for your post about bringing him home.

    • Kathy Radigan says

      Thank you so much for sharing your story with me!!!! And thank you so much letting me know it had such a happy ending. I so appreciate your good thoughts!! Much love to you!

  8. Ice Scream Mama says

    ugh – the not knowing!! so difficult. and the falling in between the cracks too. sometimes everything seems a challenge but you are so strong and brave (even when you don’t feel like it) and will do everything you can to do the best for them. what a week! hugs!
    Ice Scream Mama recently posted…You’re the one that I wantMy Profile

  10. Patty Chang Anker says

    So many ups and downs to the journey when parenting kids who are “atypical” or “complicated” – that’s a kind of diagnosis that leaves us grasping at empty air at times. It also opens us up though to appreciating every little gift, which you are doing so courageously here, being there for your kids and grateful for all you have even in the fear, the not knowing, the watching your child have a hard time which is excruciating for any mom to do. Hang in there, Kathy, and hopes for more information soon.
    Patty Chang Anker recently posted…Please remember SamMy Profile

    • Kathy Radigan says

      Carol, it’s funny but PANDAS was brought up as a possible explanation since he tested positive for STREP. I found the link very interesting, thanks! 🙂

  13. Walker Thornton says

    My thoughts are with you Kathy-scary stuff dealing with hospitals and illnesses. I can only imagine how challenging it is to not have a Diagnosis..somehow it seems to help when you can use the ‘right term’. It helps define as well as point one to the right sources of help..and as you noted, gives you a home with others who share the illness.

    You’re obviously a strong, resourceful woman. Your family is lucky. My best to Peter and to you all in the upcoming days. And, remember to find time for some self-care.
    Walker Thornton recently posted…Sharing My Writing ProcessMy Profile

  14. Lisa Weinstein says

    Hi Kathy – you are in my thoughts! The not knowing is the hardest. If you had a definitive diagnosis, you could formulate your battle plan. But you don’t, so you wait, in limbo. How has Peter been since he was diagnosed. Did the symptoms subside? Were they able to tell if he did, actually, have symptoms of a seizure.
    I hope you get the answers you need Kathy!
    All the best,
    Lisa

    • Kathy Radigan says

      Thanks so much Lisa. As it stands now, it does not look like he was having seizures, which is good. We have an appointment in a few weeks with a neurologist who specializes in movement disorders. We shall see!! He goes back to school tomorrow. He is still shaking his head, but nothing like he was doing Wednesday and Thursday. He was put back on his regular meds (which they do use for tics) and that seemed to help! Thanks again! xoxo

  15. Joy says

    My thoughts are truly with you, Kathy. I was especially struck by this line: “I tried to keep calm as I was watching these new symptoms.” I know how that feels, as we watch our children and whatever symptoms present, hoping we don’t miss any. I’m always scared of missing something and then spotting it when it’s too late. It’s a paranoia, and I wish I could rid myself of it. But as moms, it’s not that easy is it? As you said, we just want the best for our children, to ensure they live the best possible lives we can give them. Hang in there and I hope you continue to have the support you need. xoxo
    Joy recently posted…Culture On A Plate: Hosting Parties Abroad Filipino StyleMy Profile

  16. Cathy Chester says

    We have so much in our extended family between Asperger’s, ADHD, LD, NLD, OCD – wow. It looks longer now after I typed it.

    I hear you, girlfriend. I am here for you anytime, anywhere, any place. This too shall pass, and your kids will all be fine. In the meantime, let’s meet for drinks soon….

    PS How/where do you get your pictures? I love this one of the rabbit hole.
    Cathy Chester recently posted…Six Tips That Have Helped Me Stick To My Weight Loss PlanMy Profile

  17. Mary Widdicks says

    Wow, what a scary experience. I hope everything works out and you guys get some answers. Your description of your son not quite fitting any diagnosis (ASD, ADHD, etc) reminds me so much of my son. He too almost fits a bunch of criteria, but in the end it never seems severe enough to really push for a label. I really hope you guys find some peace!
    Mary Widdicks recently posted…Psst. I Have A Secret!My Profile

  20. Ashley says

    I’m so sorry you’ve been dealing with this. I so remember the diagnostic limbo. You really do feel like you need a membership card to belong to the sisterhood. I’m here to tell ya that you so don’t! Only requirement for membership is that you get it. And it sounds like you really, really do. Thoughts, prayers, and hugs comin’ atcha.
    Ashley recently posted…My Stats Monitor was a GremlinMy Profile

  22. AlexandraFunFit says

    I SOOOO relate to your feelings and thoughts. My son also has a variety of symptoms, but no specific diagnosis. Going from that feeling of “I’ve seen this before” to “what the heck is going on” is heart-wrenching and exhausting. Where is the magic mom hormone that would let us take on our children’s pain? I hope you get answers soon.
    AlexandraFunFit recently posted…Blue Diamond is my Golden Egg, or How I Made an Easter Coffeecake Using Coffee AlmondsMy Profile

Much thanks to Joseph Radigan, who besides being a great husband and father, also uses his talents to gently and ever so tactfully edit my blog. Joe is a business editor at Thomson Reuters in NY.
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