Malachi

I know that I used to post a lot about my struggles with Chi.  He is in such a better place now.  He still struggles.  He still needs zero wiggle room when it comes to boundaries and rules, but he is doing so well.

I could rehash 30 issues we have dealt with this week, but that is not the story of his life now.  His story now revolves around his emerging ability to safely connect with the world around him.

Chi can say, "I love you," and now he means it.  He is not mimicking he is communicating.  Chi can meet my eyes now and we can share a moment.  The connected moment can still send him for a loop, but his loops are smaller now.  Chi can smile softly now and not every smile is a tight, near grimace spread across his face.

Chi can play appropriately for a period of time without constant correction and redirection.  Chi can participate in some group activities now. 

I cannot compare him to other kids his age, but my sweet Chi is making progress and we are headed in the right direction.

Bringing Your Drama

   One of my insecurities in moving was that my family is full of drama.  At least, I feel like there is a lot of drama.  I asked myself, "Who would want us around once they figure out all of our crazy?"  It is one thing to live somewhere where people are already invested in you and your family.  Our friends and church in our former community watched our family change, and they rooted for our family to succeed. 

Moving is all about joining and joining something new tempted me to try and hide the crazy.  I just wanted people to like us!  Joining things is hard enough for a family of 7, but it is especially hard for Chi.

Before we moved we actually stopped going to church because every Sunday was so difficult for Chi.  We either kept him with us and got nothing from the service or we dropped him off and got to deal with the repercussions of his insecurities for the rest of the day.  Too often, the poor Children's Church workers would be quickly overwhelmed by his escalations

   One of the many new things you get to join when you move is a church.  We visited so many where we were invited to drop our children off in the children's area.  Sometimes none of them went, but we never sent Chi on the first visit.  It was enough for him to take in his new surroundings without strangers actually trying to touch him.

As far as joining goes, we have been attending the same church for nearly 2 months now. We were feeling like maybe we have found a home.  The children's program has also worked very well for our family.  Ryan and I joked that we were having "date" Sundays because for the first time it was usually just the 2 of us enjoying the service together.  How nice it is not to have a child beside you who will suddenly react loudly to the slightest stimuli just as you are beginning to be drawn into the message or music.

Everything we join, like this church, we have had to prepare them for Chi.  I sometimes struggle between wanting to give him a chance to walk in and just be another kid and being fair to everyone else so they can understand his behavior and can better meet his needs.

At our current church, I decided to try and let Chi go more of the "normal" route at first. I didn't want to be identified by the crazy. I gave a very light warning about him having some sensory issues.  That was a mistake. 

I had heard about some issues, but they were pretty minor.  Then came his third visit where he spun in circles, climbed on the tables, screamed at the leaders, and took swings at people who tried to touch him.  The teachers called in more strangers to calm him down.  Never did they call his family.  That was upsetting.   One of the helpers said, "I hate to say it, but he was just bad."

It was time for a meeting with the head children's pastor who had just returned from sabbatical.   As we sat down to talk she pulled up our family and there beside the boys, names were notes of concern. That sounded like an indictment.  As she read it off I felt stupid and a little irritated.  Not one volunteer work had added anything about Sensory issues, but they had a list of reactive behaviors and concerns about our parenting.

I sat with that pastor and I spilled their story.  I cried as I truly walked back through all they had suffered. I still felt bad sharing, but I realized some people have to know.

We had taught Chi to say out loud what was bothering him instead of just reacting so when he pulled in and said, "I'm afraid of you." That concerned people who didn't know better, whereas Ryan and I would have been proud of him for using his words instead of getting aggressive. The pastor had to understand Chi has a very legitimate reason he is afraid of random people touching him.  Add to his history  his sensory processing disorder and a room full of unexpected sounds and touches and it is amazing he is doing so well.

Obie, and Zee can walk into most anyplace now and function without much if any issue.  Chi cannot do that yet, but he is getting so close and I made the mistake of treating him like the others.  He is not and I am not doing him any favors by pretending otherwise.

By the end of our meeting another children's church leader had joined us and we had hashed out a plan of care for Chi that would address his special needs. One asked if she could hug me and the other asked if we could pray.  The way it all happened was unfortunate,  but in the end it has drawn us closer to the church. 

Yesterday we joined a large homeschool program.  Children are separated by age.  The place was loud and chaotic and dull of unexpected stimuli.  I walked Chi in I pointed out how the lights were different because they were so big.  "Look at those big lights Chi!"  I pointed out how it smelled different because of the rubber floor, "Feel the floor with me Chi!"  I pointed out how it was so noisy because of all the people, "There sure are  lot of NICE people Chi!"  Chi calmed as we walked through this little process.  Good thing Deb was there to support me with the other 8 kids. 

I wasted no time and found the head of the program and pulled her aside for a chat about Chi's overload issues.  She was great and all on her own she went right to Chi's area and rearranged the setting instantly to give Chi less to process at one time.  It was a great experience for all of us.  I guess I am learning how to be a joiner of things and how to do it the right way, one mistake at a time.

You WILL walk

I like those stories about people who defy the odds.   I like when the underdog wins.  I like it when someone says I can't because that means I will go out of my way to prove I can.

When we began this journey toward parenthood we defied the odds.  My barren womb carried 2 children, my once empty arms have now been mother to 5.

We were told we should reconsider adopting.  We were told we should reconsider adopting outside our race.  We were told we should reconsider adopting more than 1.  We continued forward in spite of those who said we could not or should not.

Early on the caseworkers, the therapists, family, and even friends have told me not to expect too much from "trauma babies."  We were told, in essence, to set the bar low. We were given lots of information to parent "damaged" kids.

I personally have read about brain damage, parenting techniques, and my children's individual diagnosis. I have spoken ad nauseum with experts.  I have used their ideas from time to time.   I like to be informed.   Smile.

Here is the real scoop on me.  I identify with the Mama who is told her child will never walk and then goes about proving the doctors wrong.   I know the disgust she carries inside at these people whose only goal seems to be helping her best accomodate the diagnosis.   The intense and burning desire to prove them ALL wrong because her baby deserves someone to at least believe they have a shot.  They deserve someone
Who will look them square in the face without pity and say, "You WILL walk."

This is the Mama that I am to all 5 of my children.  They are all amazing, they are all capable, they are all overcomers.  The spirit is available to each and every one of them, enabling them to walk in victory, not defeat.  It is that spirit which will cause them to be more than conquerors.

My job is not damage control.  My job is to coax, pull, push, prod, and demand until my children believe they can do more than crawl because their MAMA says they can!  My children are proud of themselves and they should be,  because I get on them like white on rice when they mess up and I help them be proud of themselves with every hurdle they triumph over.  It is exhausting, emotionally messy, amazing work that I am seeing fruit from it all over the place.  I know my children are capable, intelligent, and mighty, but my job is not done until they know it too.

All this time I have felt pulled to do things someone else's way.  No more.  This is MY way and I embrace it.   I am constantly told by people that my children should not be doing as well as they are.   I smile, but inside I know who my babies are and these people, these doubters,  these naysayers... they ain't seen nothing yet.

Problem Solver

Zee is being two.  I mean he is fantastic, but oh so 2!  I remind myself it isn't personal.  He just woke up one day and realized he has power, he has a voice, he has an opinion,  and Mommy is good for problem - solving.  So he works on having me problem solve ALL DAY LONG.  Precious little muffin that he is...

It seems interesting that as I focus on uncurling my clenched hands from the idea of  having control another strong voice has joined the chorus of voices saying, "Uh, MOMMY!  I need you to solve everything!"

Chi is still flipping out, but I think a little less.  He continues to improve in his sensory struggles to unexpected stimuli and that helps everyone.  He actually is a very funny and sweet boy when he isn't dealing with sensory avoidance.

  I am beginning to get a better perspective.  They aren't going to magically become 6 year olds overnight and I don't really want them to do that anyway.

Yesterday we all survived 8 hours in a car together.   It was just me and 5 opinionated kids.  There were some bad moments, and some hilarious moments, and quite a few times I had a realization that any noise repeated 20 plus times in a row makes my mini van start to feel like more like a paddy wagon, but it was decent enough.  I got us ice cream as we neared home.  We deserved it.  I survived their childish antics and they survived my parenting from the driver's seat.

In other news it looks like we will moving in mid-March. The house is the big one I wanted and I am looking forward to settling in and having room.

 I check the online appeals court docket twice a day to see if we can schedule our adoption date. From what I have seen the decision could come any day now.

Chi and Obie got their weighted vests today to hopefully help with their sensory struggles in crowded noisy environments.  We have a sports banquet and father/son basketball game with our home school group tonight, so we will see how it goes.

A Saner version of Crazy.

I am just going to start posting.  I am not sure how much of this will make sense, but if I don't write, well... I won't!

I had been very sad, mad, bad, grumpy, tired, and hopeless. I have struggled off and on for the last year.  I was improving, but there was still an obvious issue.  I had been overwhelmed.  I have been praying a lot about this issue.  On a very hard day I learned about Thin Healthy Mama.  This way of eating is transforming my mood, and my waistline a bit too :)  I am so thankful for those moments when we hit bottom and the God of all creation is right there to scoop us up with actual life changing steps to take.

The kids still have behavior issues, but the sensory processing therapy has helped a lot.  Also, it doesn't get to me the way it did.  The bad news is that for the last month the boys' medical coverage has been denying coverage, for SPD therapy, but at least I know some of the tools to use. 

Chi has really struggled in church groups lately.  Something about that room sets him off.  I can't tell if the workers want me to stay or not.  We did not go to church on Wednesday night.  I just did not want to have to pull Chi back from the edge.

We are looking at adopting again.  We got the blessing from our licensing worker and from the boys' caseworker.  Even if this adoption isn't finalized yet, we are told it will not negatively impact our adoption of the boys. 

We knew a girl who needed to be adopted because her first adoption isn't working out.  We won't be getting her as her first adoptive family does not feel it would be  best for her to be placed so closely to them.  That was a little heartbreaking for me.  We know this girl, V, and we love her, but it is not to be.

However, since considering V we have become attached to the idea of growing our family again.  We are keeping our eyes open for a placement that God would have for us.  We don't necessarily want babies.  V is 7. We just want to be a home for a child who needs us because we are starting to feel again that there is someone else out there who belongs in our family.

Peeing

Chi and I went to Sensory therapy today.  He did okay.  He had to pee one time more than usual, but that's it.  Fyi one of Chi's big things is having to pee when he's upset, bored, excited, mad.

He only moaned, cried, and twisted a few times on the ride home.  I picked up the kids, dropped off the sitters,  and headed to Walmart.   I decided to skip a ton of fights and keep him in his own cart and have Cy push Zee in another.  He, Chi demanded to pee 4 times while we were in there.   Demanding it involves screaming, sobbing, slobbering, and grabbing himself.  So I took him because if I don't he will pee himself.  The last time it was the faintest trickle, but it got him out of the cart!  He said he had to go again and started in, but then Cy said something about flushing him.  The show stopped instantly and he asked Cy not to flush him.  "I will just hold it okay Cy?"  This was said in a perfectly calm and normal voice as if he wasn't just losing it.  Part of me knows its manipulation,  but if I'm going to be cleaning pee then it works.

Later at  naptime I sent him to go potty and get in bed.  15 minutes later he's running around yelling he has to go potty.  So I let him.  5 minutes later he's screaming from bed that he has to go.  Wearing a diaper doesn't stop any of it.

So that's today so far.  Not feeling too snuggly right now.

Therapy Animals

Chi has his issues, as I have gone on about before.  He can startle and scream and go from bad to worse before I know what started it all.  He has been diagnosed with Sensory Processing Disorder.  I haven't done much traditional therapy with the diagnosis.  I do try to be aware of that side of things and work with him to process unexpected events instead of pushing and escalating the issues.

I have heard of therapy animals, and I feel like I am getting some bonus therapy lately.  Watching Chi with all of the new animals he is the happiest kid around.  The puppies and kittens bump, tug, roll, and climb all over him and he loves it.  He is always carrying a kitty or a puppy.  He is not at all afraid of the goats in the pasture.  If I have any issues it is getting him to stay back at times.

Even with duck herding Chi is in on the action.  We herd our ducks to the pond and we herd them to their little house in the evening where they get safety from predators and a nice meal. The herding is noisy and unpredictable, but Chi even loves the ducks.  There is not an animal on this property that sets Chi off.  When he is upset you can set a kitten on his lap and he is a new kid.

Chi has struggled with empathy and cause and effect in relationships.  But with animals he seems to understands that the animals can be scared or hurt or happy or sad.  He understands his actions affect their feelings and how much they want to be around him.  He coaches everyone else on how to treat the animals.

I am loving on Chi lately.  He has been a happy boy and I think all the animal snuggles have helped him regulate big time.

Little Updates

We are leaving for a vacation!  I am so excited.  We aren't leaving for a couple of weeks, but I got permission to travel.  I am trying to be very ready.  I have a multitude of little things I am doing to hopefully make our trip easier.  My cheap trip is adding up.

In other news court got pushed back again.  It will take place while we are on vacation.  We were informed  we don't have to testify.  Our advocate is well enough to take the stand and he will speak for the boys.  God bless him.

I spoke with the caseworker and there will be no goodbye visit.  She agrees with the therapist that it would not be good for the boys.  Yes!

We have been doing sensory processing stuff, but he (Chi) got a lot worse.  I have learned through trial and error to do sensory activities and "therapy" when he's happy.  When he is spiraling we go no-nonsense and take a snap out of it approach.  It is working well and his therapist feels that is what Chi needs.  I feel we are making forward progress.

Obee is cracking me up.  He sees black men and shouts, "Dats a Obee just like me!"   We say that yes that man has beautiful skin just like Obee.  Recently I heard him say quietly, "Oh, he gots beautiful skin just like me." 

I want this to be better, but there are so many distractions.  At least its an update!

Getting Ready to Jump

Yay!  My amazing husband fixed the laptop issues I have been having for quite some time now.  I could get it to work, but it was annoying and sporadic.

Chi and I went to visit an occupational therapist yesterday for an assessment of Sensory Processing Disorder.  He had a broad range of sensory processing issues with some of them being very acute in certain areas of touch and auditory processing.

I have a lot of feelings about all of this, but what matters is what he needs from me now.  I couldn't believe how he could go from arching his back and flailing to calm and easy with some of the techniques she was using.  I am being trained to use a "Thera-brush."  For now I brush his arms, legs and back as much as every 2 hours.  I also stretch certain joints for 10 repetitions.

She gave me lots of pages of ideas to go ahead and try out at home.  She recommended a back pack for him because the weight will help.  She also recommended those tight shirts swimmers wear.  I am going to put lots of things he can do for tactile activities in the backpack.  She said to include things like:  straws to chew on, putty for his fingers, a weighted lap snake (think of a tube sock-like item full of rice), and a container of things with different textures, like squishy, hard, soft, rough, and smooth.  I can't remember it all.  I will have to look at my papers.

He has a lot of touch aversion even though he seeks out the sensory stimulation.  He doesn't know how to relax when he gets it.  He also does not like being in amongst unexpected noises.  He seriously hates being touched from behind without warning.  She explained that some of this is probably heightened because of his past.

Today when we went to another appointment for him, I saw his behaviors through this lens, and it did help.  I was still embarrassed.  Yeah, that's my kid screaming and throwing himself down because other people unexpectedly walked into the room, and yeah that's my kid screaming because it was time to get up when he was sitting down.  I told him we would be leaving, I told him it was coming soon, but that does not matter with Chi.  What matters is that he never "heard" me and I reached down to touch him to get him to move and that terrified him.

In addition to all of that Chi has had what appears to be a seizure.  He started this strange barking cough that was very short and repeated nearly 20 times,  I picked him up thinking maybe he was choking and he was rigid, then he began shaking from head to toe.  It was not the violent shaking that I have seen on tv and it only lasted about 10 seconds.   It was so short that I was unsure of myself.  Now, as we discuss seizures with Dr.s and therapist we will try to figure out if some of the rigid staring he does is a sensory processing thing or something more.  We have more appointments next week for that.

Chi doesn't look special needs.  He looks like everyone else.  His behaviors read like a very out-of-control toddler.  No one will know unless I explain and that just isn't realistic or fair to him.  So this is where all of my "feelings" come in.  I have all this grief because I expected too much of him and I didn't look into things sooner.  I wonder if we will ever have "normal?"  I know I signed on for a different life, but this is something more than I bargained for.

 I am not this amazing parent who can handle anything that gets tossed her way.  I am lazy, and whiny, and scared, but I so want to be hard-working, and stoic, and brave. I keep having to overcome me to do this thing I am doing and it's exhausting.  I have been reading about faith this week.  I am continually reminded that God's power can accomplish anything.  A little bit of faith can move mountains.  I told God this week, "You have to help me God, because I am my mountain!"

Between us... I'm scared.  It's the kind of scared I had when I bungee jumped.  'There is no way I am backing out, but what if I don't bounce, what if I just keep falling and there's nothing to catch me?  I'm not going to think about it, I am just going to operate on what I know to be true.  God will never leave me or forsake me.  At nineteen I learned to do what I am doing again today.  I'm just going to take the next step and the next step until maybe the air is rushing past me and I'm having the greatest thrill of my life.


The words my youngest brother spoke to me one time keep going through my head, "God's got this Mandy.  God's got this."

An Answer?

I looked up Sensory Processing Disorder late last nigh or rather very early this morning..  Both of the therapists have mentioned it.  I could check nearly every single symptom for Tot, and just about as many for Tyke.

There are different types. I am oversimplifying here, I know.  One type goes after any stimuli, Tyke fits way too many of those symptoms.  Another type recoils from stimuli and Tot fits nearly every single symptom for that category.  If I remember correctly I also read something about it being hereditary, which would make sense.

I DO NOT want to label them.  I DO NOT!  I also fall into the category of those who believe children are too easily diagnosed, but...  If going down this path gets me resources or just ideas to better give the boys what they need, then how can I not look into it?  With Tot, especially, I feel out of resources. 

I need to say this for me.  I just love these little boys.  I would never willingly let them go.  Sometimes the future IS daunting.  I wonder did God really choose me for this?  I feel so inadequate. It is humbling and frustrating and draining not to KNOW what to do in a situation.  We are making it and we have already come so much farther than what I could have imagined.  Every day God is faithful.  Every day I marvel at what he is doing in these boys, in this family, and in me.  Just had to add that.