Saturday, December 14, 2013

Cerebral Palsy

Last month (November) was Adoption Awareness Month.  I had written many posts on Special Needs Adoption, Foster Care, and what is was like for us raising children with Fetal Alcohol Syndrome, Autism and Rad.
I thought I would add one more post to that bunch and just go over what it was like for us to adopt a child with the diagnosis of Cerebral Palsy.   We actually have three children with that diagnosis.  Elizabeth and Zeke have low tone (floppy tone) Cerebral palsy and although it is an area they have needed a lot of physical therapy, leg braces when young and makes life a bit of a struggle for them, it is not an area that has changed our daily life in a huge way.  Now that they are older children, most people don't even notice they have any issues physically until they run, are playing a sport or are trying to keep up with other children when playing.

What I really wanted to share was, what it was like adopting a child with spastic quadriplegia Cerebral Palsy.  Very high tone CP in all four limbs.  That is what Antonio's primary diagnosis is and the commitment to adopt him and care for him for his entire life changed our lives in a huge way forever. 
I don't want anyone reading this post to even think for one moment we have ever regretted adopting him.  But wanted to share exactly what it all involved so if someone is praying about adopting a child with this type of care and disability that you can go into it "eyes wide open" and know long term the commitment and plans that need to be made.

The beautiful part of adopting any child is the "embracing a wonderful child and bringing them into your home as yours” part…that is the easy and wonderful part.  Learning each other, blending into each others lives and growing together as one family, is the exciting, wonderful and beautiful part.   
Antonio's adoption day!

I wish to share the technical part.  The things we have had to do to accommodate for his needs and ways it has changed our lives.  I am hoping that if you are thinking about adopting a child and making that forever commitment to them, this will take the “scary” out of viewing some children’s files. I am going to be very honest in this as well.  So as to give you the full view of the kind of things we have had to do, money spent and how our lives changed.  I want to be honest so people can make the most informed decision when adopting. 

We have learned that just like there is an autism spectrum where there are children on the very mild end, children on the very severe end and everything in between.  It is the same with Cerebral Palsy, Fetal Alcohol syndrome, or even drug exposed children.   That you can not view a child's file and know what their care is going to be like, just because it says Cerebral Palsy or Autism.  Each child is a person and all of us are individuals and are all different.  I have three children…all with the diagnosis of Cerebral Palsy and they are all different in tone and ability.  So actually talking with a foster mom of the child your interested in or their case worker who actually knows them, is often a very helpful step before meeting them.

I can only share what it has been like for us, from the perspective of our family, as we have walked this road.  Most of our children have multiple diagnosis and many of those we didn't know about when we made the commitment to adopt them. I can tell you that it would not have made any difference to us.  We love each of them just the way they are and even though some of what we have went thru with them has been hard.  It was no different than what you would go thru for any child that you love and want the best for. 

When stumbling upon Antonio’s picture and description it said he was a wonderful little boy seeking a forever family.  That he was good natured, had Cerebral Palsy and was wheelchair bound.  That he would need a committed family that would be willing to keep him in weekly therapy and understand his long term medical needs and care. 

Of course I fell in love with this…
This is his picture that was posted on the description.  The description did not say if he could smile or communicate.  Of course we wanted to know more than the short description provided.  So we went to our case worker (for DFCS as we were doing foster care) and she applied for us to receive his file.  His case worker in Atlanta thought we would be a good “match” for him and sent us his full file.  As we waited to receive it, we were excited to finally get to know his full medical history.  When it arrived we were very disappointed in the lack of documentation and lack of all records.  It was actually a thin folder that arrived with mostly legal hearings listed and placement visits accounted for.  His file had very little about his schooling, therapies or abilities. There was hardly any record of his medical history even though we knew it was extensive.  It said he was born a micro-preemie at 23 weeks gestation but no birth weight or any pictures or much documentation to go with it.  We saw a list of his surgeries to date and that did help to paint a picture of all he had went thru.  Bless his heart.  At that time we learned he had a shunt and we researched that, as we were not familiar with what that was and entailed.  Mostly what we concluded from the whole file after review was that his primary diagnosis was Cerebral Palsy and that he had a shunt, crossed eyes and global delays.  The list of things he could not do was longer than the list of things he could.  Basically, it was still all so vague. 

I researched everything they mentioned in the file and Tim and I prayed about it all.  We did get permission to speak to his case worker and she could not answer many of the questions we had.  So we received permission to speak to his foster mother and ask questions.  It was at this point that we really started to get a feel for Antonio as a living child.  We could hear the great love for him in his foster moms voice and we understood more what it was like day to day to care for him. We learned how Antonio's Cerebral Palsy was spastic, severe and in all his limbs.  He would need total care for the rest of his life.  We prayed hard but felt led to proceed. 

After we went thru the proper protocol and many visits we brought Antonio home for good. 

We were already used to having a lot therapy appointments as many foster children and our son William was already involved in Physical Therapy, Occupational therapy and Speech therapy.   A suggestion I might add here…If you ever have children with multiple therapies going on all week long, it can eat up your week, energy, gas money etc.  You will be running almost daily to all these appointments.  What I learned years ago is to ask the therapy place to get all appointments onto one day and time frame.  It may take a while for them to work this around to actually happen.  But it is much easier to have a therapy day where you go once a week to town and spend the morning or much of the day.  Than to have your schedule so chopped up you can't get anything else done.  We home school and once you leave the house for an appointment it is very hard to get home and get the kids settled into schooling for a few hours. 
Antonio working hard at therapy!

So when Antonio came he needed weekly therapy.  He also needed us to work with him and follow thru with his therapy at home.  He had a wheel chair and needed it for his mobility.  So we had to build large ramps on our entrances of our home and put in small threshold ramps in areas where there was small flooring differences.  As he has grown some of our doorways were also to narrow for his larger wheel chairs. 
  
When he first came he weighted only 24 pounds.  We could take him out of his wheel chair put him in a car seat and pick up his wheel chair and put it in the back of our van.  But this soon became very hard to do.  As soon as he had surgery to place a permanent feeding tube (G-tube) he quickly began to gain weight.  Also his chair was heavy to pick up and put in and out of the van every where we stopped to do something.  So we knew we had no choice but to purchase a handicap van.  We have found very little help out there for anyone needing to purchase a handicap van for any reason.  Any place that thought they might contribute soon saw we also needed a van with many seats as well as the lift  because of the large amount of children we always had.  Tim and I started buying small used transport buses with lifts.  Even the old ones are expensive.  They broke down frequently but it was the best we could afford at that time in our lives. 
In the above picture I happened to be taking a picture of Stephens second vehicle his little green truck.  But in the back round you can see what our vehicles were at the time! An old retired handicap school bus we were trying to fix up for use and an old transit bus!

I remember one time, many years ago, Antonio was having a shunt failure.  I was told to bring him to Atlanta (An hour away)  immediately for surgery.  Tim was at work.  Our bus broke down right at the exit the Children's hospital was at.  I could get no one to stop and help us.  So left the bus and walked…me pushing Antonio in his wheel chair.  Stephen pushing two babies in a double stroller and several small children walking with us in tow.  It was a hot day.  I stopped at several small shops on the way and no one would let us use their cell phones or phone so I could call my husband or for help.  We walked the whole way to the hospital.  Tim got me my first cell phone the next day. 

Many times our vehicles broke down like that but over time the Lord would show us a better one here or there.  We went thru four large vehicles over the years before getting the one we have now that is reliable, has heat, air conditioning, enough seats, a lift and runs well.  God is so good. 

We also needed a special bath system to bath him in because he could not sit up unassisted.  Over time as he grew we started hurting our backs trying to bath him in the tub even with the special seating.  So we made plans for a handicap bathroom that would make his daily toileting and bathing easier as he grew and we got older.  

There are many kinds of equipment we have needed over the years for his care.  Standers, Tumble Form side-laying systems, seating systems, gait trainers, leg braces, hip braces to keep his legs from scissoring, glasses for his crossed eyes, wedges, benik splints of all kinds to straighten out his hands,  potty chairs, bath systems strollers, feeding pumps, a hospital bed, wheel chairs and a hoyer lift.  Just to name things off the top of  my head.

The hoyer lift never worked well for his body shape.  It was a bit of a help when he was smaller but as he grew we still had to do just as much lifting using it as not using it and this kept all our backs in pain to care for him.  It was the only lift insurance would pay for.  We heard of a lift called a Solo Lift that is designed so one person can totally care for a person using it alone.  It can move a person in a seated or standing position. We went to try one out and praise God I could totally care for Antonio alone with it.  I practiced transfers and put him in and out of his wheel chair with out lifting at all and I did it all by myself.  I could not believe it.  What a very great invention!  It was very expensive.  I can't remember the exact amount but about $5000 dollars.  We prayed and prayed.  We saved for it but every time we had some money saved toward it, a major appliance would break and need replaced or one of our vehicles would need repaired.  We just could not seem to get enough.  We told very few people about our need.  One day God placed it upon a families heart to provide this lift for us.  It was very humbling and we are so very grateful to God and for the L. Family for purchasing this for Antonio.  It has made the difference between us being able to care for him at home or not anymore.  God is so very good.

Another thing we got used to when having Antonio come to live with us was frequent surgeries and hospital stays.  He had a shunt that failed frequently.  It was an emergency each time as it could quickly become life threatening from the pressure building up in his skull.  He had 15 shunt failures just since he has lived with us.  Two of those ending up with him catching a serious brain fluid infection that resulted in very long hospital stays. (several  months each time)
Bless his heart. :(

Antonio does not handle the heat well or cold.  So we always have to take that into consideration when going anywhere.  We also have to think about if a place is handicap assessable we wish to go to or if parking with the lift will be an issue.  Also all the pre-planing if going out of town, all the equipment we will have to take and the closest hospitals to our destination.  We have ended up in the ER more times than I can count while on vacation with several of our children.  Mostly with breathing issues because of the change in air type.  Antonio does not handle the air in the mountains or ocean very well with out all his breathing treatments stepped up a notch.

I will share this in truth, that even though we prayed earnestly about adopting Antonio before actually doing it and felt very prepared for his long term forever physical care.  It has been at times much harder than we could have ever thought.  He has become a grown man and Tim and I have aged.  All of us who care for Antonio have badly hurt our back or shoulders many times, over time, taking care of him.  But then God provides a solution.  The Solo Lift, or a new wheel chair with easier ways to transfer, or a hospital bed that raises and lowers!  Praise God!  

I know this sounds like a lot.  But I wanted to be honest and show this side of it all.  

I will also tell you in all honesty that it has not been nor is terribly hard or bad.  We are a family and go all kinds of places and just do normal things together.  We all work at his care together.  If God calls you to a child with Cerebral Palsy, you just do it and God helps you.   

We would have done all this for any child with these needs God brought to us thru adoption or biologically.  Antonio is a joy daily!  He is such a blessing.  I would do anything for him.  He prays for people off and on all day and in the night when he wakes up.  I can not even tell you when I over hear him praying...so passionately so fervently and then hear that those words are for me.  It is enough to bring you to your knees.  He is such a precious soul. 

Even though Antonio's daily care takes a lot of time.  Tim and I have never looked back or regretted our decision, EVER.  God is much bigger than we are.  He is able. 

Psalm 139:13-16  For thou hast possessed my reins: thou hast covered me in my mother's womb.  I will praise thee; for I am fearfully and wonderfully made: marvellous are thy works; and that my soul knoweth right well.

 

Blessings,
susan



 

4 comments:

  1. Beautiful! We too adopted a child with quadriplegic cerebral palsy. She is the love of our lives. You are right about God providing as we need new things to help with lifting, bathing, transportation and so on. We have been blessed with things just as we have needed them. It truly is an honor to care for our girl and she has given us so much more than I think we can ever give her. God truly knew when he chose us to be her foster parents that we were actually headed to being her forever parents. Thank you for all that you share about raising kiddos with special needs - I find your blog inspiring.
    Dannette

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    1. Thank you so much Dannette for sharing your story with me! It blessed my heart so much today to hear something so wonderful and encouraging. God is truly so good. May God abundantly pour out His many blessings upon you and your family now and always for your faithfulness. Have the happiest of holidays!

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  2. I also find your blog incredibly inspiring. I do know I am not as selfless as you and Tim and have no desire for MORE special needs in my life, but I love reading about your challenges, how you meet and subsequently overcome them, and how you see God's hand in every aspect of your life. May you and your family have a wonderful and blessed Christmas season as well. :-)

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  3. Thank you Julie! You are such a faithful and good friend, always so encouraging! I am always inspired by your blog posts as well. You are one good mom. May God hold you and your family in the palm of His mighty hand this holiday season. Bringing joy and making happy memories for you to cherish always. Blessings!

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