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.

Sunday, March 5, 2017

I wish

I wish...

I wish that my daughter's IEP came with a budget for alcohol and chocolate because that would help us out a lot.

I wish that people could be here to witness her meltdowns. That they could watch as she hits me, like she did tonight so people would stop being so shocked that something is wrong.

I wish I had someone with me all the time who could tell me what to do on nights like these because I am at a loss and I don't want them to continue. We have been to a behavior therapist and a GI and no one has helped.

I wish the phrase "Mommy, I need you" didn't strike such dread in my heart.

I wish I was able to spend more time divided evenly between my children so I was assured that Isaac felt he got equal attention.

I wish we had started this whole process when she was 2 so she would have gotten help focused around the home. We would have been given more strategies.

I wish we knew what the food trigger was that causes her to want to poop and not want to poop.

I wish I wasn't so tired.

I wish so many good days didn't end in such disruption.

Friday, March 3, 2017

One step at a time...

When Isaac was in the NICU there was a pivotal day. He had gone several days without "bradys" and the medical team said that once he had gone 7 days without one, he would be cleared to go home. I excitedly said to my baby "you hear that? You might go home early!" Our seasoned nurse heard this conversation and went to the attending on duty.

Now, if you haven't had the lovely opportunity of having a child in the NICU, there is an important fact to understand about all of this. The nurses are not allowed to leave their stations unattended. So my nurse stepped across the aisle to have this hushed conversation. Being a teacher, I am well versed in the behind the hand hallway conversation and instantly knew they were talking about me. A few short minutes later the head neonatal doctor came over to talk to me about Isaac's progress. Long story short; even if he mastered his brady's in 7 days, he had a lot more work to do before exiting the nursery. He was making forward progress but it was going to take the expected length of time.

Today I felt the same way about Sophie's progress. We have been so excited about all of the great things she has been achieving that this set back has been devastating to us. We needed to have someone step across the aisle and let us down easy. To remind us that this is a long journey and even though many things are exciting right now, we need to pace ourselves because this is going to be a long haul. 

Sunday, February 26, 2017

Tomorrow will take care of itself.

"Just take one day at a time."

"We'll cross that bridge when we come to it."

"It's a process."

"It will all work out."

All of these sayings are adages that are supposed to make us feel better. Instead, they often end up leaving the receiver of these well meant phrases feeling a little unsettled. See, deep down that person understands that all of these helpful phrases end with the realization that one day you will have to cross that bridge and deal with the problem. Cue the sinking feeling of impending doom and stomach knots. 

Today I was given the solution to the "just take one day at a time" problem. Today, in the middle of a quiet church I was told to not worry about tomorrow. Tomorrow will take care of itself. I tried to hold onto the author's name but of course somewhere in the mix of getting my two children through mass and home, the verse escaped me. I believe it was Matthew. But in the post break world most of us are re-entering tomorrow, I thought it was perfect. "Do not worry about tomorrow. It will take care of itself." Oh the release! I was released from moving forward to quickly. I was released from my to do list today that mainly consisted of preparations for tomorrow. I was released from worrying about what challenges lay ahead. Tomorrow will take care of itself. Just live in today. 

It's amazing the things you can learn when you take a moment, sit in silence and really listen. Enjoy the moment and don't worry, tomorrow will take care of itself.

Saturday, February 25, 2017

Six truths I have learned on my sensory processing journey...

The last 10 months have seemed like a sprint at the end of a marathon. You are already exhausted from your extended run but somehow you dig deep so the guy next to you doesn't beat you to the finish line. It has been a long three years of questioning and doctors and suggestions that didn't work and now that we have answers, we feel like we are sprinting to make up for lost time before we potentially lose support in Kindergarten. As we gulp our water and run like our hair is on fire, we have discovered a few truths about sensory processing disorder. I felt like this was a great place to share them.

Truth # 1:
Kids with sensory processing disorder can be very verbal. My daughter scored 40 points above the average child in her age bracket on the verbal tests but is just learning how to communicate things like hunger and bathroom needs. She needs prompting to make eye contact and say hello to peers and adults. She talks constantly (every moment of her waking day) at home but is just beginning to speak in school and new situations. She is much more comfortable when her brother is with her. So having a huge vocabulary or being able to talk the ear off of someone when she is in a comfortable situation is one of her strengths that we are utilizing on this sensory processing journey.

Truth # 2
Many kids with sensory processing disorder are very anxious beings. My daughter does not like to try anything new until she watches someone she trusts do it first. She does not dive head long into a ball pit or run up to new children to play with them. She stands quietly and observes. If I try to push her, she will freak out. But if she does it on her own terms, she will quietly tip toe into a new situation. There are many things she is anxious about including getting her hands dirty, going to the bathroom, new clothes, capris, 3/4 length sleeves and foods that are squishy. The list goes on and on but for the sake of time, I will move on.

Truth # 3
Kids with sensory processing disorder can be very quiet. When she was diagnosed, we were told SPD kids fall usually into two categories- fight or flight. My daughter is a flight risk. So when faced with a sensory problem, she is much more apt to melt into the background and disappear than she is to pitch a fit. Especially in public. Especially when she does not have someone with her who she feels completely comfortable with. She saves her meltdowns for home. If you drove past our house some mornings when it is time to get her dressed (see anxiety over wearing capris), you might get a different view of our world. 

Truth #4
Sensory Processing Disorder can make some children extremely compassionate and caring people. It also makes some kids completely unaware of other people's needs because the internal distraction is just too much. There is just not one version of a child with sensory needs. Even in the same family the sensory needs might be different. Just as with non SPD kids, every child with SPD is different. 

Truth # 5
It takes children with Sensory Processing Disorder longer to bounce back from being sick. If you think about your own personal experience with illness, you will find that it takes a few days to get back on your feet after a stomach bug. Now, imagine your whole body is a raw nerve and any slight change is upsetting. Throw a stomach bug on top of that and you can picture the damage it does. We are two weeks out from a stomach bug and finally beginning to return to our normal. It is a very long journey and we are lucky we are normally healthy. Post sickness aftershock is worse than the original bug.

Truth #6
In my opinion, this is the most important one. Sensory Processing Disorder is something my daughter will have her whole life. Her internal wiring will not magically realign itself to be like child without this disability. The work we are doing now will help her to feel better in her own body and help her manage herself in a loud and unpredictable world. As she grows, her needs will change and we will need to make adjustments. We will teach her new coping skills and give her the support she needs to thrive. At some point, most people will forget that this is something she even has. That is our goal. But, in all honesty, she will always be a child with this disorder and it will shape who she is in amazing and challenging ways.