Tuesday, July 18, 2017

The Funny Similarities between the Renovation Process and Living with Sensory Processing Disorders...

Raising a child with sensory processing disorder is like spending your entire life renovating a house. Renovating a house is a huge undertaking; it can sometimes be really messy and ugly and occasionally, your work uncovers a rare gem that would never had been discovered if you hadn’t started pulling back the layers of wallpaper in that &@#^ dining room!

Having lived through several renovations in my adult life (all of which were taken on by my husband and not myself) I think I am an excellent source to make this comparison. Renovations begin with the stage I like to call, “the lofty goals time period.” During this time period the renovator looks around, makes a lot of notes and says to him/herself “yeah, I can do this! This will be a piece of cake!” The renovator creates a timeline for the project, presents it to his/her spouse/partner/whatever and says “this will be way better and cheaper than if we hire someone!” The partner is sceptical that this project will turn out the way it is being sold but her loved one’s enthusiasm sways her and in a show of support she says “Ok! Let’s do it!” When our daughter was diagnosed with SPD my husband and I looked at each other and said, “Now that we know what this is we can fix this.” “We’ll get this under control and be on our way to a blissful child raising experience in no time!” Our friends told us “She’s so smart, she’ll only need an IEP for 6 months!” A year later with a new IEP, additional services, glasses, other diagnoses, I can’t help but look back at my naive self and shake my head.

Enter stage two of the renovation or what I like to call the re-evaluating your plan and timeline stage. At this point you have pulled down the wall paper in the dining room only to find there are four more layers and you think…”no one would really notice if I just paint over this right??” This is the stage where you tell your very pregnant wife that the baby’s room might take longer to prepare than you thought and promise that the baby and your mother in law will have a place to sleep before the baby arrives. It is at this time that the non-renovating partner looks around the mess in his/her house and thinks “Why the h--- is this taking so long? It can’t be that complicated?” You begin to consider giving up and just hiring someone to do the job. Is the sense of accomplishment really worth all of this hassle?

This renovation stage involves a lot of research, trips to Home Depot, calling friends and possibly other handymen to help, lots of late nights and an abundance of cursing. In our parallel SPD world, this is the time  that occurs after you have your diagnosis and your child is set up with services. Quickly your providers beginning to notice things and all hope of this processing being a quick detour off the child rearing path you always planned for are shot. The professionals begin to comment on her eye tracking, notice that she doesn’t cross the midline and ponder on the fact that the behavior they witness at home is not what they see in the therapy session. You begin to get frustrated so you buy books and read every page. You join online support groups, searching for help and as a last ditch attempt to put the picture of your child completely together you start seeking alternative therapies. And then one day you find yourself at a very Eastern medicine workshop holding jars of herbs buying into what the nutritionist is saying and you stop and look around and think, never in a million years did I think I would end up here!

Finally comes the home stretch. This is the most satisfying stage of a renovation. (It is also the time in our life that usually coincides with a move to a new home and new projects.) You have done your best, you have asked for help with the aspects of the project you couldn’t do yourself and you are generally pleased with the results. You know that soon there will be another project that will absorb your nights and weekends but for one brief moment you pause and admire your work and pat yourself on the back. For a sensory processing parent that occurs when your child achieves something two months, two weeks, or two days ago he or she couldn’t do. When your therapist looks at you and says he/she can’t get over the progress your child is making and how far she has come. When the warmth of pride and tear inducing joy bubbles up inside of you and you begin to let yourself think that maybe everything will be alright. We have all been there and while we know that more than likely tomorrow or the next day will contain a setback of some level, for one moment we can step back and look at our beautiful child and appreciate the hard work that has been done to help his/her light shine bright.

Tuesday, July 11, 2017

There Might Be Lobsters

One of the best parts of parenthood is imparting your love of great literature onto your children. There is nothing better than watching your children fall in love with a book and beg to hear it again and again until they have the whole thing memorized. It's even better when the book they are currently obsessed with is one you adore too. Enter There Might Be Lobsters by Carolyn Crimi and illustrated by Laurel Molk. It is a story about a fearful dog named Sukie, her continually exasperated but patient owner and Sukie's pet monkey Chunky Monkey. Told through the voice of Sukie, you begin to understand how anxiety works and how amazing it feels when you are forced to overcome that fear and do something that truly scares you. Sophie and I have read this story many times this week and it has been the basis of a lot of great conversations as she conquers one of her own great fears- the swimming pool.

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Tuesday, June 27, 2017

Network Spinal Analysis

A year ago Sophie was only able to have a pixie haircut. She had to have short hair because there were spots all over her head where she was bald. It just wouldn't grow. Then last July the pieces began to fall into place. We uncovered her lactose intolerance and she began to eat. Slowly her body responded to the changes and began to get the nutrients it so desperately needed. Hair began to grow.

November came and she finally had access to OT and PT services that brought balance to her always out of kilter body. She no longer needed to pull her hair in order to relieve her anxiety. The bald spots began to fill in.  We hadn't figured out all of Sophie's pieces yet but the world was becoming a less scary place.

Two months ago, a fellow SPD mom messaged me about the wonders of chiropractic care and nutrition response testing. I found a chiropractic office that did both and we began the next step in our journey to support Sophie.

Today I divided Sophie's whole head of hair in two and gave her pigtails "like Abby Cadaby." She wore a short sleeved shirt with itchy wings and grinned from ear to ear. She has been waiting for years to have those pig tails. I may have shed a tear as I looked at her. All I could think was, "look how far we've come..."

We are now firm believers in Network Spinal Analysis Chiropractic care. It has changed our life for the better. I have decided to spend part of my summer collecting information on and writing about this particular branch of chiropractic medicine. I hope what I post will be helpful to everyone and especially those families who love someone with SPD. We will always have tough days but when I look at how much hair Sophie has grown in one year, I know we are on the right path.

Sunday, June 11, 2017

A PSA from your friendly neighborhood choral music teacher...

Hello there! It’s me! The person you instantaneously tell your music horror stories to the minute you learn that I have a university degree in the subject! Even the adults who work with my children preface every singing activity with “don’t listen to me- I have a horrible voice.” I want you to lean in close and listen very carefully- you don’t!  Gasp! Believe me when I tell you, the ones who are apologizing for their instrument, usually have no reason to do so. Here is where the problem lies. By yourself, you actually have a great voice! The out of tune rendition of “Happy Birthday,” that ends with an apologetic shrug and a frantic glance around the room to make sure no one recorded it; has little to do with the quality of your voice and everything to do with your ear not being trained to match another person’s pitch. Great singers listen to each other; amazing singers listen to everything and use their ears to strengthen the technique they have worked so hard to achieve. There are very few people in this world who couldn’t become great singers with a few vocal lessons and a lot of singing in groups.

But here’s the thing. Singing is like weight. Your children don’t notice you have a flabby belly until you point it out and they don’t realize that you can’t sing like Lady Gaga until you flag your flaws. I am no Indina Menel but I love to sing and do it as often as possible around the house. And guess what, my children could care less! My kids ask my husband and me to sing their favorite songs and then they joyfully join in! So sing! Don’t let any child know you are less than perfect- teach them what a release it is to belt out your favorite songs in the car, while washing dishes or changing diapers. Why is this so important? Well, singing, like exercising, has health benefits. I would quote the stats from any number of peer reviewed music journals but I can hear you over there thinking “well, they have to say that, it’s their job!” so instead, I found an article in a magazine most of us are familiar with- Prevention. It says that singing “helps you to bond with others and make connections,” that it is thought to “improve your heart rate variability or the amount of time between heartbeats” and most importantly “helps curb snoring and may help people with asthma.” If you don’t believe me, check it out! www.prevention.com/health/6-health-benefits-of-singing.

Whatever you do; sing frequently. The more you do it, the better you will get! Don’t wait until karaoke and several adult beverages are involved. It may help your health, it may make your children more confident in their own abilities and it will certainly guarantee that the music educators like me aren’t left singing alone.

Tuesday, May 16, 2017

Mother's Day thoughts...

Part of me wants to have another child. There, I said it. But, I want that child not because I think we can afford it or my marriage can survive another human in our already crazy life but because I want those hospital pictures. It sounds insane but it reminds me that I am still recovering from having a premature baby.

I want to experience consciously leaving my older children behind to go have the baby. I want to kiss them goodbye and tell them that the next time they see me; our family will be one person larger. I want my family to dress my daughter and son up and bring them to the hospital so that we can get that one perfect picture. You know the one I am talking about; the one where the older siblings are sitting in the hospital chair or on my bed- I am not that particular, with their feet sticking out and their new sibling stretched across their laps. That beautiful moment in time captured while we are all still in the hospital.

Those moments were stolen from me because my son was born six weeks early. I left our house frantic in the middle of the night hoping that this was all a surreal nightmare. My son met his sister for the first time at our house, two weeks after his birth. She wasn’t allowed to enter the special care nursery because of her young age and his convenient arrival during the middle of flu season. To be honest, I am not sure I would have wanted her to visit her brother in his clear isolate surrounded by wires, beeps and hustling nurses. I think it would have scared her.

But I have to let that dream go. I have to accept that the sadness I feel is attached to the trauma of giving birth and raising a premature baby. This deep ache is part of the healing process and that we are lucky to have ended up with two healthy children and plenty of pictures of them sitting side by side grinning at the camera with their feet sticking out. I have two legs to sit on and two arms to squeeze with and all of them are filled. It is enough until someone posts that perfect picture and the ache starts all over again. 

Sunday, April 23, 2017

Therapies work and miracles happen!

I have been a little quiet on the blog front recently and that is mainly because I have been hard at work on pieces for a variety of sites. I have also been just enjoying life. Spring break provided us with a week of much needed down time. During this last week the kids have been able to rest and recharge. Sophie system is finally back regulated and we are able to enjoy our lovable, clever and musical child once again. I couldn't be happier. February and March were full of turmoil and we have had to make some agonizing decisions regarding her OT services and dietary needs. Now that we have made our changes, I feel like we are ready to move forward. Apparently, Sophie has been feeling the same way.
Sophie has a moderate gross motor delay. It is exasperated by her sensory disorder. This amazing combination results in a child with a lot of energy who has no idea where her feet when she is excited and an extreme fear of any unknown motor based activity. No swings, no high slides, no bridges, tunnels, carousels, rides and the list could go on and on. Enter PT and OT. (Especially PT). Now my child jumps off steps and will get on a swing (although she will only be on one where her feet touch the ground).  I have begun to stop holding my breath when Sophie moves and am entertaining the idea that she might be able to play on the playground with her friends one day without adult support.

Then, this week, we went to the trampoline park and she did this:


Even Isaac says in the video "Deeter, jump!" I may have had to fight back tears. I am sure everyone around me at Sky Zone must have thought I was nuts on Friday but this is a miracle. I was afraid we might never get here. If we go again, she may decide not to jump but now I know she has it in her. Therapies work. She even scraped her knee while jumping, let me put a band-aid on (that Sky Zone provided!) and then went back to having fun. She promptly followed up reaching this milestone with letting me push her on a swing for the first time in her life! 

Did we have set backs this week? Absolutely. On the first day of break she fell while running and obliterated her knee. That was followed by a day of limping, begging to be carried and a day of sobbing when I made her take her band-aid off. But we are better prepared to handle these issues and she has an easier time recovering now. I hope with the change of OT and additional nutritional support our family will gather even more tools to help Sophie on her journey. With hard work and dogged determination, miracles do happen. So if you are a family slogging through your sensory journey, please know that days like this are ahead. Just make sure you have your video camera ready. 

Saturday, March 11, 2017

Real talk about sensory sickness

Sickness. Let's get real about it. In your average sensory regulated child, it sucks. Cold? Terrible. Stomach bug? The worst. Now put that in a child whose sensory synapses are wired to code red all of the time?? Well, let me tell you, it is a world like no other. It is kine of like living through the apocalypse only to find out that means you are one of the few people left to fight the zombies. I am 100% sure I did not sign up to be that person, yet, here I am now!

How do you know you are living through the post sickness life? Let's consult the checklist...
    1. Has not returned to a normal bathroom cycle?- check!
    2. Is acting like a complete lunatic when she needs to enter a bathroom?- check!
    3. Sees her mother and runs screaming because she knows Mommy is going to make her sit on the potty?- check!!
    4. Has to be wrestled into pjs because he has decided sleeping butt naked in 10 degree weather is better for her than avoiding hypothermia?- check and check!

Living the dream people. Living the dream!

Oh and by the way, if you are the person who so graciously shared your stomach bug with my child, I would like you to sign up for a shift on the sensory train. It only seems fair.