Special Needs and Medical Needs

The other day I walked through the front room, living room, and Max was playing baseball with himself.  He was pounding his right hand into his left hand, saying something that sounded very sportish and pretended to pitch an imaginary ball.  None of that was very exceptional that scene, or some variation, plays out in our house hundreds of times a week.  Max is a natural athlete!  He loves balls.  He would sleep with a ball if we would allow it he has asked on several occasions.  What stuck out on this occasion was his choice of a  "catchers mitt" it was one of my big, square hot pads, left on the dinning room table from the previous night's dinner, yes that's right not everything in my house gets put away as it should, to be honest it seems very little actually is where is should be.  That big pad with a long wide opening fit perfectly over his misshapen hand.


As he stood there pounding his hand into that mitt I was struck again by the challenges that he faces.  He can do anything with a ball kick, hit, throw, catch...it's amazing.  It's even more amazing to think that he can do all of that with a missing radius in one arm, therefore having a severely twisted wrist, and the other arm's elbow permanently dislocated so he can't stretch it all the way straight. He can never really be an athlete, not in the way that I am sure he would like!  I think soccer might be a viable option for him, he'll have to work through some balance issues, we will certainly try soccer, but it seems to me that Max would be the child who could jump from sport to sport and never miss a beat if he didn't have the issues he has.


People will say I am sure that he can overcome, and therefore do, anything but that's not reality.  Max will never be able to fit a mitt on his twisted left hand.  So baseball is out, even if a mitt could be put on the hand he doesn't have the strength or control in the hand or wrist to actually use it to catch a high speed ball.  Tennis would be a great choice, but again not being able to use his left hand might diminish the back hand a little, or a lot! Football might work, I'm not really familiar with the particulars of the game, lots of big boys running toward my Max doesn't seem like a good idea to me! I can't imagine how disappointed he might be to watch sports and to know that from most he will be excluded.


Raising a child with special needs is nothing like I had thought it would be.  In the adoption world if a child is difficult to place, heart defect, cleft palate, or any other host of issues, that child is placed on the special needs list, but in reality many of those aren't really special needs.  Many are medical issues that can be addressed and fixed, never to be thought about again beyond the telling of the child's story.  There are special needs blogs out there for adoption, but I don't see a lot that address actual special needs, those things that can't be fixed and must be dealt with every day.  No confessions from moms of SN children that they are frustrated and worried and not sure how to correctly help their child.  Obviously, there's no book that tells every momma how to deal with her child's need.  Every child is different and therefore how they deal with a physical difference isn't the same across the board, whereas heart surgery is pretty much the same depending on the issue, a cleft palate is fixed with only small variations to each particular child.  Max lives everyday with limits placed on him by the fact that he is missing part of what should be on his body.  For the rest of his life he will have to adjust and adapt what is "normal" for the world just to function.  For me the reality of true special needs can be overwhelming and although I don't spend a lot of time cruising the internet I don't see a lot of words of wisdom in dealing with the day to day life of a truly special needs child.


A friend of mine brought a little girl home from Max's orphanage who is completely blind.  They struggle everyday with the issues of an older child adoption, the sweet girl was 8 when she came home, they also deal with the fact that she is blind and must walk through life differently.  When we talk we often jump between the topics of "how much do we push our children who have limitations?" and "how do we deal with the orphan residue?".  Both are difficult questions and issues to deal with but when combined together the two can feel daunting.


If we push too hard to overcome the SN will he resent us and not bond well?


If we ignore the SN and deal with him as if he doesn't have one will he be frustrated and feel that he's not really seen for who he is?


Do we talk about the arm?


Do we ignore the arm and act like it's normal?


Do we talk about having been in an orphanage and how he felt to come home?


Do we address the bad behavior at home as it relates to having been an orphan? (I know you might have done this at BFF but at home you can't do that.)


Do I try to make him use that arm to strengthen it when I'm not even really sure there are healthy muscles in it?


Do we discuss now what other kids might say about his arm?


Do we discuss now what other kids might say about his skin color?


Do we discuss now what other people might say about adopted kids and/or orphans?


Many parents who adopt a "SN" child will only deal with half of the issues.  Their child will grow up functioning in the world in a more "normal" way.  They might have struggles with attachment, separation and other issues as a result of having been abandoned and adopted, but their SN is also hidden away, not on display for all the world to see.


So all this to say, I wish things were different.  I wish there was more help out there, more people writing about life long special needs along with adoption.  I wish the adoption world might change their terminology a bit to "medical needs", and "special needs", they just aren't the same thing and unless you are raising a child with life long special needs it's hard to relate!


Please understand that I am not diminishing the needs of children with medical issues, nor am I diminishing the sacrifices families make to adopt children with medical needs.  I'm just pointing out that most of the help/support/information I find is based on medical needs.  Not the day to day reality of raising a child like Max. For that I am disappointed.

Happenings...

The last month, or so, has brought a lot of challenges, changes, special occasions and memories.

Mother's Day brought me yummy steak and a hydrangea...my husband truly loves me because he HATES hydrangeas.   (I find this strange for a man with so few opinions about the house, fashion, the yard...etc!)

School ended for the year...and not a day too soon!

We had  the great genetic scare, which turned out to only be a scare...Praise the Lord!

Hayden graduated...which requires a surprising amount of work for the parents...I did not know that!

My parent's and Veldon's parents came for the graduation,  and I had my house cleaned, by someone else, for the very first time in my life!  (That was super nice and will likely never happen again!)

Our one year anniversary of meeting Max, being approved by the Board and returning home came and passed and we celebrated quietly as a family, for me it was so very private, something I didn't really care to talk about.

Allison, my beautiful green eyed girl, turned 16! (They all have green eyes, but Allison's are so huge!)  I can't believe it, she's growing up into a lovely young woman.  Her friends call her "preacher girl" because she's always ready with a scripture when her friends are struggling or when questioned about her faith.

Max's surgery has been scheduled and will take place tomorrow, a little later than we had hoped for which meant a mission trip to see some great friends had to be cancelled.  We can't really expect the little guy to travel for 12 hours 4 days after surgery, as it turned out the need for the mission trip was much less than originally anticipated, but we are disappointed nonetheless.

The transmission in the van went out, it was a long, hard fought death, but the end did finally come, and a large chunk of Max's deductible had to be paid!  As life would have it, both of these ended up coming due on the same day, a Thursday! YIKES!!!  For a minister's family with one income, several thousand dollars in one day is impossible, but God provided, a good part of the deductible has been paid and the entire amount for the transmission.

Through all the fear, the need and the waiting God has shown us Himself.

Psalm 50:9-11

⁹ I have no need of a bull from your stall
    or of goats from your pens,
¹⁰ for every animal of the forest is mine,
    and the cattle on a thousand hills.
¹¹ I know every bird in the mountains,
    and the insects in the fields are min

I love these verses because they remind me that my Father owns everything, He has everything. Verse 10 seems to be screaming that when He gives to us it doesn't deplete His resources one bit, they are abundant and unending. How could we tally the value of the cattle on a thousand hills? Can you picture a thousand hills covered in cows? How absolutely amazing is that!

This has been a long month that at the same time seems to have flown by.  I am so glad to have completed the first year with Max.  We have off and on struggles to be sure, he is stubborn, and disobedient at times, but at the same time he is sweet, caring and kind.  He's still working to find his place in this new world sometimes through listening and following directions and sometimes through coming up with a plan of his own.  He tells me all the time how much he likes me, his mommy, more than the nannies at the orphanage.  He tells us how glad he is to be home and that this is his home.  He talks about things he did in Thailand, not with remorse just as memories, some good some bad.  

We are so blessed to have had the last year with Max.  We are so blessed to have walked through the last month of triumph and stress, and fear, and to watch God provide for us.  I can feel God talking to me, wooing me, replenishing my faith which took such a hit through the long years of waiting for a beautiful brown boy on the other side of the world.  I've written several times about shaken faith and haven't posted much.  It would be a great step for me to do so, it's easy to be judged by those who haven't had their faith shaken, but mine was and there were days that I thought it was gone, that He was gone, but we got through and slowly but surely I can feel Him reaching to me and...well I don't know!