Friday, December 9, 2016

Nolan's (and Mom & Dad's) Update

When I last posted, I was doing pretty well emotionally dealing with the journey we have been on.  I was amazed at the outpouring support we received on the blog and on Facebook.

A family friend, a former special education teacher, encouraged us to look up the poem: "Welcome to Holland"  This poem has become my mantra the last 6 weeks.  When things are hard, when we have a bad day, when I am at a complete loss and just a pool of emotions, I pull up this poem.  When I am at a loss and fall into Alex's arms with exasperation and desperation he looks me in the eyes lovingly, gives me a hug and says, "It's ok Honey, this is Holland."

I share this to tell those going through this that it is hard going through this journey; it really is.  Life feels unfair and you feel sad and you feel scared and confused, but it is ok.  It will be.  There is a HUGE learning curve, but it will be ok.  Prayers, smiles, kind looks are always appreciated, but you know it will be ok.  Some day, some how, you will get new maps, new language, new understanding of all that you are present in and you will be ok.  You will get used to Holland.  We aren't yet.

We think we are getting close and we have accepted it and we have our footing, and then we have more days where he isn't like his peers, more suggestions of therapy we have to do, more lists of things we have to try, more expectations, more let downs, more disappointment, new perspective, etc and we start over.  We go through the grief process again, BUT then we see the TINY milestones and a peek through of hope and we start to chin up.  It goes in waves.

So, since we left off we spoke with Birth to 3 and were pretty much waiting until December to look at things again.  Then sleep got SO BAD and we were having many more "bad" days I contacted Birth to 3 and asked them to come back.  We started OT.

OT has worked on a lot of sensory activities with the goal of providing Nolan with sensory breaks through out the day in order to have him seeking it less through out the day.  We have used the thermapressure brush (he likes it and it can help but I find I forget to pack it when you are taking 2 kids out 2 and under) joint compressions (He likes these, it takes no packing, and it does sometimes help), vestibular activities like swinging and rocking (he really seems to enjoy these and get us some smiles, even if it is not helping as a sensory break it is so nice to see this kid smile!) weighted blanket (not really helping we can notice, but we keep trying), and a lot of deep pressure (which, with a 2 year old boy, looks like rough and tumble play/pillow fights, etc.)

We also decided that we wanted to go through with an autism evaluation as we just felt there is more to this than sensory stuff going on.  We don't know if it is autism and in the back of our heads we are still just hoping it is just a bunch of quirks he is going to outgrow, but we also know wishful thinking is not something we should base or kids future/well being off of.  SO, we made the call.  This call resulted in a PILE of parent surveys for us to fill out so they can use this for part of the evaluation.  We filled it out quickly to get it in ASAP. The called back in a week or so and said that paperwork did show enough concern to go ahead with a parent only/interview appointment.  We just went to that on December 6. The appointment paired with the paper work has deemed that Nolan is borderline qualified for further testing.  We are approaching with the stance, we are never going to say we tested to much and provided to much therapy to him was he was little.  We would much rather approach it this way vs. wishing we would have done more in the past.  Our doctor also stated the pros: we get answers, we can see what is next, and we can stop just wondering.  The cons: We could have a diagnosis (which can be a good thing for whats next) but parents need to often go through a grieving process.  Yup, feeling that already.  Testing is scheduled for 2 weeks out and we will discuss the results early in the new year.

We have been having more bad days than we have in the past, but we have also made many gains.   We feel we are ignored, the emotional connection is minimal, he still does not show pride in accomplishments, and seek our participation much.  There are days where we feel down right ignored.

We took Nolan to the Kaukauna Christmas parade and he was cold.  He was unable to communicate what he wanted (I believe because he honestly didn't know-he just knew he was uncomfortable) and basically was upset the whole time.  Wow that was hard for a mom to take.  That being said, Alex and I have agreed that we want to keep doing things as a family and we will hope as Nolan gains skills he will slowly start to join in with our family.  That is our biggest goal.

Our other HUGE goal is sleep.  We just want Nolan to get the required hours of sleep he needs to allow his body to function at it's best.  We have realized he has more "on" or "good" days when he is well rested....but he really is struggling with relaxing enough to get that rest.  Nap time is the biggest frustration for me at home.  I am putting somebody down from 9:30-3 some days, and then when all that work is wasted on a skipped nap anyway I about lose my mind.  Then one or both are up in the night 2-5 times and I am running on caffeine and optimism.  Sleep is a big goal.  Oh, sleep, I miss you!

On a particularly hard day I just about lost it.  Nolan has skipped nap again, Stella was screaming, the dogs thought it was time to eat 2 hours early, the house was a mess, people were coming over, and I just felt like a failure as a stay at home mom.  My job is to keep the kids safe with sleep and food, maintain the house.  None of that happened.  None.  I sat in the chair baby wearing Stella (she just had 6 month shots and since she is so small and there were so many she just was struggling more than she did with 2 & 4 month shots), and sobbed.  I mean alligator tears, face hurts, sobbed.  The dog (Pudge) reacted to my tears by coming and sitting on my feet.  Stella looks at me with wide eyes wondering what is this new noice coming out of mom? Nolan?  He handed me the remote and told me turn on Blaze.  It hurt he wasn't responding to my emotion.  It hurt he was clueless to how I was feeling.  I cried harder.  Then, I took a deep breath, wiped my face, added it to the list of things I want to work on, and vacuumed the kitchen.  Nolan and I jumped on the trampoline, and I made a promise that I cannot take what he CAN'T do personally. He is not being a bully.  Yup, that was a low.  Now, looking back on it, its kind of funny he just hands me the remote, uses his words to express his want/needs, and says, "' 'mote, turn on Blaze?"  Glad I can laugh at it now!

We are also concerned about getting all he knows/knew to come out.  At one point, Nolan could spell his name.  He did animal noises.  He counted up to 14.  He sang Old McDonald, Row Row Row Your Boat, and Twinkle Twinkle. He danced.  He doesn't do those things right now.  He does know his colors and is doing GREAT with them.  It is almost like he goes through phases of things he is good at and "forgets" the other stuff.  I know it is in there, we are just trying to figure out how to get it all out.

We went to a library story time and at the end they let you play with toys.  I plunked Stella in front of the bead maze and she was loving it.  Then NOLAN JOINED HER!  Played next to Stella, went to someone to join them in playing, and didn't bat her hands away when she touched something.

We went to Thanksgiving at my aunt & uncles and Nolan and Charles were playing in the same room.  Then, they were playing with the same toys.  That in itself was a big deal. Then, Charles did something and Nolan didn't like it.  He came up to me and said, "Charles!" I asked him whats wrong with Charles, just to encourage language.  Nolan replies with "No, No!" **finger point and all, haha.  I said, "Well tell Charles then!"  and here's the kicker, he walked up to Charles and said "Charles, no no!" **again shaking finger.  Words, social, and expressing feelings!

The other day we went to the Kaukauna Library.  I was challenging Nolan with "first read, then play" a couple of times in the play area before story time started.  He resisted the first time but after finishing the 5 page book and he got to play, he did not resist as much the second time.  The second time I, again, said "first read, then play."  I read him another short book and set it down on the floor.  I said "All done book, go play!"  He stood up, picked up the book and said, "Daddy? where Daddy go?"  Alex had gone to throw away Stella's diaper he just changed.  I told him daddy will be right back.  He stood there, waiting, scanning the shelves. When daddy came back, he held the book up to him and said, "read it?"  😲  OMG, jaw drop!  Words, looking for daddy, planning, waiting, social, reading? O.M.G.

I stood on the trampoline today, holding Stella.  I yell over to Nolan, "Hi Nolan!  Mommy and Stella on trampoline!"  He looks at me, smiles (*insert inner squeal and melting heart here), and says, "watch this!" and JOINS us!  Words, social, going CLOSER to Stella, and smiles.  Moms freaking out over here! (but when I stepped off to watch, he promptly patted the trampoline and said "mama too" 😍

As we continue on this journey I hope to learn a lot, grow as a mother, teacher, and person, and really help my Noley boy grow into all that he can possibly be!  Welcome to Holland Everybody!

Follow me on Instagram to see us go through this journey (it is updated WAY more than the blog, unfortunately!) behindthescenes_mrsg

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