Monday, September 23, 2013

wrecked

He stands on the field in the middle of practice. It's the second week of prek/K fall soccer. I see his arms go up alternately wiping away tears, and I see his face quietly crying.  His little brother is on my lap in the grass on the sidelines, and I am not quite sure what has happened. Bubby just stands there near the end of a drill with tears coming down his face.  I try to motion him to come over to me. He looks lost and frightened, and every ounce of me wants to run onto that field and scoop him up. But I'm not sure if I should do that, so I keep motioning to him, these seconds feeling like hours.

The coach, not knowing that one of her players is crying, tells everyone to go get a drink. I'm thankful and relieved by the timing of that. Bubby runs over to me, and he's saying something I don't understand through the tears.

"I'm just sad."  When I ask him why, he can't explain.

The kids on the team this season are sassy. Sassy to the coach. Sassy to their parents. There are actually two teams practicing together tonight, and it seems worse than last week.  We have a new coach this fall, and I'm not sure she knows my son's name yet. She is louder than last spring's coach and has the sarcasm of a middle school teacher.

I want to tell Bubby that we can just go. But is that what I am supposed to say? I was not an athlete, and I don't come from a sports-playing family. I played softball in third and fourth grade. I loved it in third grade because it was fun, and we had a great coach. It was not as fun in fourth grade, so I didn't sign up again the next year.  I didn't even attempt sports once I got to middle school. Who needed extra rejection and embarrassment?

My son is so much like me in how he thinks and acts. Therefore, I think I know why he is crying though I lack evidence and specifics.  I have to internally tell myself to hold it together and not start crying, too.


I give him some water, and ask again if I can help or if he can tell me why he is crying.  The tears have almost stopped now, but he still can't find the words. I ask if he thinks he can go back and finish playing, deciding I will encourage that, but if he doesn't want to, then we will leave.  He says he can go back, and he does.  He joins the kids and plays.  But the sadness and the timidity linger. I can see it in the way he runs.

About ten minutes later another little boy comes crying to his parents. He wants to go home, and it seems as if his reasons are similar to Bubby's. His parents can't get much out of him either, and he is crying loudly.  I look at my son out on the field.  There are two other boys knocking each other down on the field, and I see Bubby trying to avoid them.  He runs after the ball, but he holds back even more than usual.

This season is not going to be like last season, it appears.  A little bit of joy was stolen from my child tonight, and it is wrecking me to have not been able to have prevented it. And as I try to talk to my preschooler on the way home about the practice and his feelings, I wonder what I am supposed to do?

Friday, September 20, 2013

a two word prayer

There is something therapeutic about making, baking, and eating homemade chocolate chip cookies. The four of us sat around the kitchen table before bedtime tonight, two of us in matching Sleepy Monster pajamas. I couldn't help put just breathe for a minute and remember that life is good.


It has been a long week. On the heels of last week's appointment, we made a follow-up with our local neurologist which was not helpful, Instead it was incredibly frustrating.  It was also on the way to that appointment that Bugaboo had a blow-out. If I believed in omens, that would have been ours for the day. The few minutes we spent with our neurologist was the complete opposite of our time last week with different doctors. Driving home all I wanted to do was cry.  Instead, I composed myself and sent a message to the experts who had offered to help us. Then I did my best to finish the day which happened to include an activity night at Bubby's preschool followed by a much needed pizza.

I don't remember an eloquent or specific prayer, but I do remember flopping on our bed in a state of complete exhaustion last night. A few of my friends had given me some ideas on where to go next with Bugaboo, but I needed clarity.  I think I may have prayed something like, "God, help," knowing that He knew exactly what I needed help with though I did not have the words. Two years of doctors and appointments and researching have taken their toll. Sometimes I believe the Spirit intercedes audibly for us, but last night I think the Spirit interceded while I just let go and went to sleep.

Less than twenty-four hours later I had an answer in an email. The place we went last week is currently without a pediatric neurologist on site. So we could see their former one privately or have them refer us to Kansas City or St. Louis. Friends, a nurse, and one of our therapists have told us to go to St. Louis, so that is what I picked.

I'm sitting here trying to figure out how to wrap this all up. I wish there was some nice little happily ever after, but we are still in process. I don't know what battles we still have to fight, and honestly, I am tired. But I do know that I am given enough to get through each day, and most days I am given more than enough. A surprise gift arrived in the mail the other day, just for me, from a father-figure. A friend took the boys to the park while I attempted to get some rest. The boys and I sang together as we went from one end of town to the other.  Another friend came to visit on her afternoon off. Bubby wanted to work with Bugaboo on Bug's first memory verse, and after having him repeat each word, he told his little brother, "Good job!"

And of course the best news was our most recent answer to prayer. The prayer I barely managed to say, but God in His grace, answered almost immediately. We are getting a referral to a place that will hopefully offer some more help and insight for us for Bugaboo. We have enough.

Monday, September 16, 2013

a letter

Dear Bugaboo,

Thursday we learned your receptive language is more than a year beyond your chronological age, while your expressive language and your motor skills are about a year behind what they "should" be. After spending most of your life searching for answers, we got some last week.While the label doesn't answer all our questions about some of the mysterious ways you have, it gives us a starting point. Or rather more of a slightly readjusted continuing point.

I want you to know that you are not a label, sweet boy. As helpful as it will sometimes be to have one and as frustrating as it may be for you in the future to have one, let me repeat this: You are not a label. You are not mild cerebral palsy.

You are the two and a half year old who has always picked up on the melodies of songs, as long as you can sing it solo.  You are our child who this summer memorized much of our two favorite Pete the Cat books. You make us smile at the way you love the pool and beam with pride at the way you already know your capital letters. You have been the snuggliest of the two children God gave me, and I am in no hurry to push away the moments you bury your head into my shoulder and fall asleep. You love babies,dogs, your big brother, and your Uncle Chow. You know exactly which intersection we turn on to get to Starbucks and which one leads us to the books at the library.



You work hard every week with your various therapies you attend. I have no right to want to cry and complain on the treadmill after seeing the workouts you do. Every milestone you have achieved by prayer and by your hard work and effort.

Therefore I promise I will keep working hard for you. I will fill out reams of paperwork if that is what takes. I will not stop pestering the neurologist. I will Google and email and call any resources I can if that is what is needed.  But I will also remember to keep the perspective that  you need me to be me more than your advocate and case manager - you mostly need me to be your mommy.

So I will keep reading the same Little Critter book six times a day. I will get out the watercolors, the Legos, or the Laurie Berkner dinosaur cd that you love. I will let you crawl on my back to wrestle me with your big brother And on those days when we are just tired, I will put on Veggie Tales and sit with you on the couch because that is what most good moms of almost-three year olds do.

Love always,
Mommy


Friday, September 13, 2013

the journey to the diagnosis

This is long, but it is what I shared via facebook yesterday. I have more to process about everything, but here is basically the eval stuff and the diagnosis. If you just want to know the diagnosis scroll to the end. :)

History:
If I start counting  when Bugaboo began receiving services (physical therapy) our journey to today’s diagnosis has been about two years.  It has been “experts” telling me his delays were because he was (six weeks) premature. At about eighteen months old everyone finally started listening (a little) to my mama-gut that it was something else.  We have seen neurologists in town (insert frustration here). We were referred to genetics out of town.  They screened Bug for pretty much everything that way, and it all came back normal.  Last summer in addition to PT once a week in home, we added speech/language and PT once a week elsewhere in addition to starting to get OT and speech/language once a month in home.  Certain behaviors started at some point that left us bewildered or sad or frustrated.  We added OT once a week. Through discussion with people I actually consider experts, I got the advice to get referred to an autism and neurodevelopmental disorder center. I filled out endless paperwork.  They reviewed it and asked more questions and said, “We want to see him.”  

Today - how it worked
So today he went for a full evaluation - he had an ADOS screening (apparently “the gold standard” of autism screening), then a speech/language eval, and then a pediatrician who specializes in autism and neurodevelopmental disorders evaluated him.  They all had their opinions separately and met together and agreed on what they were seeing.

ADOS (done by an OT)
This was a really interesting portion to observe. I won’t bore you with details, but basically it was to see how Bug interacted during play (and other similar situations). At the end the OT gave me her brief opinion - there were things that Bug did really well and things that were mysterious.  Sometimes he has eye contact, sometimes he does not. During this he showed some true-to-form ways he gets “stuck” or fixated on things.  

Speech/Language Portion
The first part of this I was in another room for the parent feedback/REEL. After that I observed from another room watching him on the tv screen. Again, I felt like they got a pretty good picture of Bugaboo’s abilities and behaviors - although he did something he never has done for me - used a 3 word sentence “I want money.” (It was for a piggy bank he wanted.) It was awesome to see what he could understand because I don’t have the knowledge or tools to assess that at home.  Basically we know he’s behind with his expressive language (what he can say) - they put him right about 2 years.
However, the SPL person came in afterwards to talk to me, and I quote, she said, “Your son is smart. Smart.”  
It’s not that smartness is the goal for my children - my love is not contingent upon abilities or gifts. But after two years of hearing so much of what my son can’t do, after seeing him with his peers and how he lags behind in so many areas to the untrained eye - after seeing him do some higher level things at home and me not understanding if I am understanding it all - for some “expert” to tell me my son is smart made me want to cry.  Apparently, Bugaboo's receptive language is ABOVE his age level - he tested at 4 years old for his receptive language.  (I will have lots more thoughts on this at another time.)

Pediatrician
The doctor came in. She mentioned our 54 pages of medical history on Bug. She was very kind and asked questions that made me feel like she thought of me as an equal - as another expert on my son.  (Actually everyone at the Center today made me feel that way.) She examined him, especially his reflexes and muscles.  We discussed his prematurity, his meltdowns, his nights when it is hard to go to sleep, his drooling, his low tone, etc.  She gave me some things to follow up with with our ENT for his drooling.

Diagnosis
After the experts conferred, this is what they came back with:
On the ADOS Bug came out on the very mild side of the autism scale/spectrum. However, the speech language person (and the other two agreed) felt that with all of the interaction/social things they observed he was not on the spectrum.  Then with the big picture of these assessments, our medical history,the genetic tests that found nothing and all of the other information - they all felt they had a diagnosis.
Mild cerebral palsy.

They told me there were a lot of signs/symptoms/mysteries to agree with the thought that it could have been a spectrum disorder. But they think that a lot of those signs (and signs that are not spectrum signs) are also signs of the issues with the cerebral palsy.  They want to see him again in a year to follow up because sometimes things get “uncovered” as kids get older - so they want to see if the ASD signs increase or decrease, but they really think CP is the diagnosis. The doctor wants us to also come back in a year for neuropsych exam - so much so that if we need it they will save one of the five “free” spots for us next year if insurance doesn’t cover the exam. They think (like everyone else) he is mysterious, but they also kept talking about how sweet Bugaboo was.

We have a letter to hand to all of our local therapy/medical/educational places as we await the official bigger packet of the results.  We have to meet with our local neuro to get his opinion, but the doctor also told us to let her know if we need help for other resources. The social worker there later told me this doctor also works in the CP clinic - so even though it is a drive, if we can’t get the help we need in Springfield, we can make the drive.



Thoughts and Prayer Requests
Thank you for praying with us over the last couple of years. I can remember specific times when Bug was prayed for by people, when you stood in the gap for him, when you anointed him with oil, when you texted to tell me you were praying for him. I can remember conversations with you about his strengths, about my worries, about his needs, about how he must be so smart he doesn’t want to be bothered by talking to all of us boring people. Thank you for celebrating every fought for milestone with us, and for even celebrating with us that we have some answers.  We have no idea still what the road looks like, what the the future looks like, what all of this entails.  

Please pray for us as we process all of this over the days ahead. Pray for me as I deal with doctors offices and early childhood centers. Please pray for our local neurologist that he would be helpful instead of a hindrance.  Please pray for us to know how best to help Bugaboo with his expressive language and his motor skills and the things that are still a mystery to us (his fixation on things, his meltdowns).

I don’t believe God gives some of us kids with challenges because we can handle it. We can’t. I may have some things that will help me handle this diagnosis, but I also have some weaknesses that will make this diagnosis hard.  But I do believe God in His sovereignty gave us Bugaboo the same way that I believe God in His sovereignty gave us Bubby.  My friend reminded me of this today in a note she sent, that I was made to be Bug’s mom and God is going to be glorified through his life. And for that I am thankful. I serve a God who is good and big and compassionate. This diagnosis is not a surprise to Him, and He is with us and strengthens us by His Spirit and His Word and the support system we have near and far.




So if you made it through all of that, thank you. And if you didn’t and just wanted the diagnosis - mild cerebral palsy.  

Much love,

The Mac Family

Thursday, September 5, 2013

five minute friday - red

Each week Lisa-Jo hosts a group where everyone writes without editing for five minutes on a given topic.  Then we are to link up and encourage one  another with our comments. Challenging and encouraging, and I love when I remember to do Five Minute Fridays.  This week's topic is a bit different. The word is red.

Go.

In the basement at their old green house off of 41st street was a red sleigh-like chair.  It sat next to the stairs and behind it was the old fashioned phone with a rotary dial. Upstairs in the kitchen was another rotary dial phone.  When I think of childhood at my grandparents house, I think of that red chair and the swinging door to the laundry room that also led back to Papa's workshop.  I cannot walk into Lowe's or any other place that sells wood without thinking of that basement.  We didn't spend all of our time in that basement, but we did spend some.


There were five of us cousins some summers when we would listen to Everly Brother tapes and put on talent shows that may include a nativity scene even in July.  Upstairs all throughout the year I would sit at the kitchen table, and Mimi would make scrambled eggs or cream of wheat for breakfast.  There were always cookies, often oatmeal, in a jar to share with Papa. My family looks quite different now - time and distance and conflict - but my memories of both of Mimi and Papa's houses are good. Kitchen tables for dominoes or cards and a red chair in the basement.

Stop.

Monday, September 2, 2013

sorting through clothes, sorting through thoughts

The last tote of baby clothes sits on my living room floor for friends to look through and cart away.

The logic of my mind reminds me that we made the decision a couple of years ago. My brain says being sad about it now is not going to undo anything. Crying today will not change the fact that I have an "irritable uterus," and that having one miscarriage and two premature NICU babies makes a couple decide to not go through that again.

My hopes of fostering and adopting were put on hold months ago, and it is unclear if and when we can start that process. For as long as I can remember, I have dreamed of being a mommy to four children. I feel entitled to having that dream come true, but I am not. None of us are entitled to anything. I am trusting that closed doors will someday be revealed as a gift, but it is a hard thing to trust. Some days it is hard to choose faith instead of bitterness.

Therefore I needed the closure of removing the baby clothes boxes from our tiny garage. I needed these tiny footie pajamas and onesies with ducks or puppies to find a new home.



Each outfit I  sorted through and refolded had a story and a memory.  There were outfits I could not give away because there were yellow stains on the collars from the medication and vitamins Bubby had to take. Oh the smell of mixing that up four years ago was awful! There was a pair of yellow jungle theme jammies that Bugaboo wore. I remember one of the nights he wore them that his little baby face looked so much like Papa's. There were outfits from my baby shower at the church we no longer attend and from people who have ended up not watching my boys grow up like I thought they would.

Perhaps that is why I am struggling so much today with this closure. The clear plastic box with the blue lid sits in front of me and tells the story of unanswered prayers. But it tells the story of answered ones, too. 




It tells of two boys who have been prayed about, for, and over during hospital stays, doctor's appointments,simple days, and milestone moments we thought would never happen. I will remember the good times and the miracles. And I will pray for the new little boys and their families who inherit the footie pajamas and who will have stories, prayers and milestones of their own.