My daughter McKenna has what is known as Sensory Processing Disorder.
She also has Attention Deficit Disorder.
She also has a pretty good IQ.
Put it all together and you’ve got one little firecracker.
A firecracker that the outside world does not necessarily understand.
I talked with McKenna and asked her if I could share her story. I wanted to know if she minded that people knew she had some difficulties and if it was okay with her that they know she takes medication. She said yes.
I have felt a pressing need to share our story and McKenna’s struggles for several reasons. I believe strongly that the story of our journey just might help someone else out there. When you live with a child who is not “neurotypical” it is hard on everyone in the family. There is silent pain that no one knows about because you don’t want to SAY that your child isn’t necessarily functioning normally.
Well meaning people will be convinced that there is nothing that a good amount of discipline can’t fix. And you will be given and suggested all manner of books regarding disciplining children. You’ll toss them angrily aside…because you are no dummy. You’ve tried them all before.
There are children out there, mind you, that can not be expected to react to disciplinary methods the way that most kids should.
And so I want to make this clear, before you judge another person’s parenting skills, please consider that there is more to some kids than meets the eye.
And what I feel the need to express today is this: McKenna does NOT suffer from bad parenting.
McKenna actually has some darn good parents.
She has parents that have prayed and sought out the best courses of treatment for her. She has parents that have paid out the nose for the proper medications that she might need. She has parents that have cried and prayed and prayed and cried for peace and help and hope.
McKenna has Sensory Processing Disorder and Attention Deficit Disorder. And God gave her to us to lead and guide and parent, which means He must trust that we can do this.
I want to start with a little background on what SPD and ADD is, how they affect the brain, and how they can affect a child’s behavior.
WHAT IS SENSORY PROCESSING DISORDER?
Sensory processing disorder or SPD is a neurological disorder causing difficulties with taking in, processing, and responding to sensory information about the environment and from within one’s own body (visual, auditory, tactile, olfaction,gustatory, vestibular, and proprioception).
For those identified as having SPD, sensory information may be sensed and perceived in a way that is different from most other people. Unlike blindness or deafness, sensory information can be received by people with SPD, the difference is that information is often registered, interpreted and processed differently by the brain. The result can be unusual ways of responding or behaving, finding things harder to do. Difficulties may typically present as difficulties planning and organizing, problems with doing the activities of everyday life (self care, work and leisure activities), and for some with extreme sensitivity, sensory input may result in extreme avoidance of activities, agitation, distress, fear or confusion.
This definition is taken from wikipedia…it’s the most succinct and best way to describe it in everyday terms that I’ve found.
I also found this written by a father of a child with SPD…
One of the most difficult parts with helping our kids with transitions is getting other people to understand why they need extra help.
“Well, she doesn’t look like there’s anything wrong. She seems fine!”
I hear that all the time. Since she has been very tiny Jaimie has been a master at holding it together until she is in a safe place. Then she literally lets loose and it lasts for hours. I’ve found when Jaimie is still–when she isn’t saying anything at all–that’s when you need to pay attention. The main struggle we have with Jaimie is that even though she has stronger verbal skills now, she still isn’t able to connect the sensations she encounters, the emotions they elicit and her reactions. And she simply isn’t able to tell others what her needs are. She relies completely on me for that right now.
McKenna is especially sensitive to auditory input. If sounds are too loud, she gets upset. If there is too much noise (as in a very chaotic situation), she becomes irritated. She cannot neurologically process them correctly and the resulting frustration causes emotions in her that she does not know how to control and reign in. As her pediatrician put it, “She physically CANNOT HELP these reactions. She’s not being bad; she just doesn’t know what to do with that feeling.”
McKenna does not yet know how to deal with overwhelming feelings of emotion. She is getting better as she gets older, but she used to tell us when a slow or sad song came on that we needed to turn it off. If we didn’t, she would scream and throw her hands over her ears. She had no idea what to do with the sad emotions that the song prompted in her. Even now, rather than saying she is crying when something makes her sad, she will say, “My eyes are watering”.
McKenna is also very tactile sensitive. She hates seams in her socks, will not wear things like turtlenecks, jumpers, anything that seems restricting. Tags in her shirts and adjustable waist bands in pants (she call them “hurty thingies”) are simply intolerable for her.
If you are around McKenna for any length of time, you will notice she carries a ragged, stuffed cat with her everywhere she goes. Its name is Mittens. She rubs the ears on her cat throughout the day, but especially when she’s concentrating or when she’s starting to get nervous. She is blessed to have a teacher that lets her keep Mittens out on her desk at school…and she is NEVER without that cat. It is her safety net…even at 8 years old.
I’ve listed only a few of the specifics of McKenna’s condition. But know that our daily life consisted of major meltdowns over the tiniest little things. This can wear a person down over time, it can affect the family structure, the marriage. The judgment from the outside only makes it worse. And so you put on a brave face and force a smile when you enter public, knowing that you’ll walk away from any given situation followed by the stares and whispers of others.
“Can’t they control her?”
You know what? No. No we could not.
And knowing that others thought we were lacking because of it, left us feeling defeated almost every.single.day.
Along with having SPD, McKenna faces a double whammy with her ADHD.
Attention deficit-hyperactivity disorder (ADHD) is a neurobehavioral disorder characterized by either significant difficulties of inattention or hyperactivity and impulsiveness or a combination of the two.
Both of these conditions, SPD and ADHD, have been clinically diagnosed in McKenna. Her intelligence is such that she is able to compensate a lot for herself while she is at school. It is within her “safe zones” that she reacts so strongly to the confusion and chaos that she feels inside.
McKenna isn’t “debilitated”. She has challenges that, in turn, become challenges for us as well.
She is bright and witty and social and creative.
She has many friends and loves school and her teachers.
But, we have learned, through trial and error what works for her and what does not.
We must stick to a very strict routine of sleep when it comes to school nights or nights before she has to get up early. We need to make sure that she keeps her blood sugar level…any dip in her blood sugar can be met with severe behavioral reactions.
And she also needs medication.
This was a route that I never wanted to pursue. But it has been, apart from prayer, the best thing that we have done for her. And subsequently, for our family.
McKenna has had Occupational Therapy and we were given some useful things to do when the situation she was in became too overwhelming. We tried every available method of discipline and technique and tactic. If there were a “natural” or “herbal” remedy, I bought it. I increased certain vitamins and minerals and ordered special liquid vitamins online.
So finally, after years of trying everything that I could to avoid having to go the medication route, I made an appointment with her pediatrician.
I read medical journals, checked books out from the library, googled message boards…I did every bit of research I could on the medication we chose to put her on. I can tell you the pharmokinetics of the medication. I can tell you its half-life and its various forms. I can also tell you how much each different dosing available costs.
I did not want to go into this blindly. Or naively.
I have been a teacher. And I have seen how many kids in our society are medicated. And I have seen the harm it can do.
But, in the right situations, I have seen it change worlds.
As it has for us.
This past Sunday, I picked my daughter up from a chaotic room with loud music playing. She was laughing and dancing…and although she initially avoided it, she let us video her dancing with a new friend.
For McKenna, for us, this is huge. HUGE.
Through trial and error, we have found what works for her. For now.
I realize that one day the needs and dosing may change. But, after many weeks of trying different things, we feel confident that we have found the right combination of things for her.
And our family.
I keep saying “our family” because I cannot stress enough how one person’s struggles within the family unit will affect each member of the family.
Please remember that not all handicaps can be seen. Please don’t ever judge a parent that you see out in public for their child’s behavior. I’m not trying to make excuses for every temper tantrum any child ever throws…those do happen around here too. We’re human. But…unless you know a person’s story, and sometimes even if you think you do, please refrain from dismissing a child’s behavior as simply “bratty”. And please don’t believe that the parents are clueless or slackers and in need of some good parenting classes and books.
That may be the farthest thing from the truth.
Having a child who isn’t “neurotypical” is hard. It’s exhausting and draining and there are tears and prayers and screams of frustration. From the kids AND the parents.
Please do not judge. Please don’t question their choices of medication or no medication. Please remember that it is not our desire that our child disrupt the world. Don’t think that we just sigh and blow it off when a meltdown happens. We worry about them socially…and if I’m being honest, we worry about ourselves socially. How others will view us, will they want to be around us or our children?
Ask us HOW we are doing. Give us encouragement, not advice. Show our kids love and respect.
Somedays, we wish we could hang a sign around our kids that says “I have SPD” or “I have ADHD” or whatever “hidden handicap” it is they carry. We want to be understood…we want to shout from the rooftops “I don’t suck at being a parent! In fact, I pretty much rock at it!”
We want to know someone is praying for us, for our family. We want to know that you believe in us. We want to know that you’ll be there when we’re having a bad day and we want to run away. We NEED someone to tell us that we’re doing great and that our child is awesome.
Save the judgment for American Idol.
If you have a friend whose child is not “neurotypical”, love on them. Love on their children. Just LOVE.
If you are a parent of a non-neurotypical child, please know you are not alone. I understand your frustration and your hurt. I’ve cried your tears…I’ve wrestled with the big decisions. I’ve watched the people stare. You can do this. This is your child and God did not make a mistake when He created them. Trust Him. When it all falls apart some days, fall into Him.
If you would like to hear more of the specifics of our journey, or you need someone to vent to about your struggles as a parent of a non-neurotypical child, please email me at morelucy(at)me(dot)com.