Our brave warrior

While Nathan was inpatient at the hospital,  his Tae Kwon Do instructor came and presented Nathan with his orange belt for bravery.  I can attest to the amount of bravery that Nathan showed by staying in the hospital even when Mom and Dad could not.  I would also like to say a very heartfelt thank you to Jason for taking the time out of his day to come and see Nathan.  The kindness you have shown is amazing and is not lost on us.  You are a prince of a man and there are not many like you!

We have now been patients of the hospital now since the middle of July and we are seeing a lot of improvement.  We are also having our set backs, which is to be expected.  When Nathan was inpatient his entire day was mapped out for him.  Every 15 minutes they had him doing something, (they also have the staff to support that).   Nathan has never really had a strict routine and now we realize how important structure is for children who are Autistic.  It reduces the amount of chaos tin his head that he is trying to sort out.  So while it may look like Nathan is having a tantrum, it really could be that he is over stimulated in so many different areas.  He could be reacting to a loud noise, or a touch or pain that he can’t communicate and it is our job to determine what the triggers are before they happen.  Trying to implement a structure at home has probably been the most difficult aspect of him transitioning back to home life.  He is very resistant to change but I believe that he wants it and needs it.  It is also very difficult with his vision disability to figure out what he can do and struggles to do.  He has worked extensively with the Occupational Therapist here at Children’s Hospital and she has given me some wonderful suggestions on how to help him on a sensory level.  One of Nathan’s teachers is actually coming to the hospital tomorrow to see what they do here so that they can mirror it at school.  I am feeling a huge sense of support from everyone who we are coming in contact with.

We took him to the Opthalmologist on Friday and received a glimmer of hope.  He said that at this time he does not believe this to be a progressive disease.  His eyes actually improved some since his last visit.  He did caution us that this could change at any time and that we will constantly need to have him checked.  When asked how this could have happened, he shrugged his shoulders and said “prayer?”.  I could not agree more.  I know that Nathan has a lot of people praying for him and we are so thankful.  He has lost all peripheral vision.  He can not see anything up, down or on either side of his midline.  Which means that it has to be right in front of him for him to see it.  It also helps us to know that we can’t come up to him without verbally announcing ourselves or it frightens him.  We meet tomorrow with a Low Vision Specialist who will help make recommendations for everyday living and how to best help him.  Again, another person from the school will be coming to help me translate all that is needed:)

From the bottom of our hearts, Jay, Madison and I want to thank everyone who has taken the time to send a postcard or a note or a message or a prayer.  Every single one of them matter and they have all been so important to Nathan and us.  This has truly been the most testing thing we have ever had to go through. We have so many amazing friends who have contacted their friends and the generosity is just plain overwhelming.

Thank you!


A difficult decision

Nathan has been attending an intensive day treatment therapy program since last Thursday. It is geared towards kids that are on the Autism Spectrum and have other developmental disabilities. He had been doing really well, but was having some difficulty transitioning from the program to home. I take full responsibility for not having the routine more established for him to be more successful.

Yesterday, during my 6 hour wait for Nathan to get out of day treatment, Madison and I decided to go back to school shopping. As I am shopping for school supplies at Target, I get a phone call from his “team” of doctors. They had been discussing Nathan and what they thought might be beneficial for him and his treatment. They felt that he needed to have more tweaking done with his medications and felt that in order to stabilize him, it would be best if they brought him inpatient. They also wanted to do some more neurological testing and observations that would be easier if he was there. This would mean that he would have to spend the nights at the hospital without us being able to stay. They asked me what my thoughts were and as I am sitting on paper towels in Target, I said that we need to call Jay and see what his thoughts were. After much discussion, we realized that we put him in this program to be the most successful he could possibly be. If the doctors thought that this was the best course of treatment, we felt that we owed it to him to do all that they recommended.

We made the heart wrenching decision to put him in the hospital for more intensive treatment. We are able to see him from 12-1 and 5:30-7:00 every day. We go sit with him for lunch and play games and spend time with him. Then we go back for dinner time and get to do bath time and read stories and play games. He is happy and for now ok to be there. He says he would rather go home, but we have explained to him that the doctors need to make sure that he feels good before he can come home.

Nathan’s original diagnosis had been Aspergers, however, after more extensive testing this week, Children’s hospital today informed us that they are changing his diagnosis from Aspergers to Autistic. They are being very proactive regarding his visual needs and are working with him to determine the best strategies for keeping him safe and for daily success.

As difficult as it has been to leave him at the hospital each night, we realize the value of the treatment he is receiving. Our hope is for him to come out of this treatment to be more successful at home and at school. We hope that we can help him in any way possible and can’t wait to bring our baby home.

We ask that you please keep Nathan in your thoughts and prayers during this difficult time for our family. We thank everyone for their love and support.

Update on Nathan

I have received numerous requests wondering what is going on with Nathan lately.  I thought I would write a brief update to let you know where we stand right now.  Let me preface this with we have been waiting for this day for weeks, but literally have needed this for years.  Yesterday, he was admitted into an intensive day treatment therapy program at Children’s Hospital in Denver,  CO.  He started this program today and although he was timid and hesitant at first, by the end of the day he seemed to really enjoy it.  He will have different types of therapy such as music and art.  He will have social skills training that will help him relate to other people and especially peers.  He will have one on one work with a therapist to help him understand what is going on with him.  He is surrounded by other children who have similar needs as he does and require the same kind of intervention.  I am thrilled that he is there, but am also extremely anxious.  This feels like our last hope, but I know that if this does not work out, then we will push forward for the “next” thing.  However, I have to feel hopeful in this moment and not look towards that.

My heart broke while at the hospital to realize how many children there are that are in the same boat or worse than Nathan.  My heart aches for those parents.  I know what it feels like.  I know how isolating it can be, how alone you feel and no matter how much someone wants to help there is just not anything they can do.  I wanted to hug everyone I saw and tell them that I get it,  but I also want that same hug.  There is a look between special needs parents.  We get it and we don’t even have to say a word.  There is this bond between us and it is horrible that it took our beautiful children having these terrible issues to bring us together.  Autism is not the end of our world and neither is any of the other issues that Nathan faces, we will get through this and we will be stronger in the long run.  But for now, we wait, as always to see if this works.  I pray that this is the treatment that he has needed that will give him the best shot, and I will also say a prayer for all the other children who need the help just like Nathan.

Thank you all for your concern for Nathan and for our entire family.  We appreciate the thoughtfulness and the prayers.  We feel them and feel blessed to have such wonderful family and friends.  The post cards have been pouring in and we do not even know all the people who are sending them.  Please include your return address so that we can send you a thank you note.  From the bottom of my heart, thank you!

Missing my girl

So we sent Madison to my brother and sister-in-laws house for the last 5 days.  It is the longest she has stayed away from us and we miss her terribly.  She needed to go to get a break.  She needed a break from the chaos, the stress, the arguing and from Nathan.  I hate to say it, but Nathan is very hard to be around lately.  Ever since we took him off the medication and he had the reaction, he has been different.  He is still loving and wonderful, but different.  He says things that he does not mean, does things and doesn’t know why and behaves in a way that does not reflect who he is.

Every time Madison called, she sounded so happy and carefree.  They kept her so busy with fun activities (they are making us look bad:).  She stayed up late and did all the fun things that a 10-year-old girl should be able to do, but can’t when you live in a house with a brother who is Autistic and has numerous special needs.  Life becomes all about that person and you tend to get left in the shadows.  Not because anyone means to, but because we all have to survive.  How do you tell a person that you love more than life itself to hold on, I will pay attention to you in a little while, but right now I have to deal with this.  And in her world a little while never comes.  It does seem to be all about Nathan.  We can’t go here because Nathan can’t handle it, or we can’t do this because it will bother Nathan.  When does she get to do what she wants to do, just because she wants to.  I NEED her to know how much we love her and I feel like I am losing that battle.  I don’t have the answer to that, but just try to reassure her all the time that she is just as important, but his needs are greater right now.  It won’t always be that way.  Once he goes through this treatment, life should get better.  It has to.

As a treat to her, I redecorated her room.  I painted it the color purple she has been wanting.  We bought her a queen size bed, since she is barely fitting in her twin bed.  We put decorations all over her room and I am anxiously awaiting her return to see what she thinks since she doesn’t know we did it.  It is a small gesture on my part to show her that I do think of her and that she does get things that Nathan does not.  I hope she likes it and I hope when she grows up she will forgive me for not being the Mom that she needed me to be.

The long journey

When we started this journey with Nathan 5 years ago, I thought we might go to a doctor, talk about what we noticed and leave with a diagnosis.  I had NO idea that we were getting ready for what would become the nightmare of a lifetime.  Nathan has had numerous tests, evaluations, questionnaires, blood draws, genetic testing, MRI, Visual Field Tests, VEP’s, you name it and my child has done it.  5 years later, we are a little closer to understanding all that is going on, but I promise you that we are just scratching the surface.

We have changed doctors so many times due to lack of information or their inability to look past their own noses to see my son sitting in front of them and hear us tell them what is going on.  Believe me parents do actually know about their children.  They know what they are like outside that doctor’s office when they are on their “best behavior”, so please do not pretend to know my child that you see every year or so.

We wait, that is what we do.  Currently, we are waiting on the results of the genetic testing that they are doing.  They are doing two types.  The first type is biochemical which we should get results within 2 weeks (testing was done 3 weeks ago) and molecular, which is where they sent that blood to Baylor to have the DNA stripped and are looking for major diseases.  I asked the doctor if he would write down the names of what they were looking for.  He said, “Parent to parent, I would rather not.  These are very scary illnesses and I don’t want you to look it up on the internet and be scared in case it is not what it turns out to be”.  They indicated that if it comes back as something serious that they will hopefully have caught it early enough to intervene or help us get through it.   The next step at the end of this month will be to see a Low Vision Specialist, I believe to provide us with accommodations.  Then back to the Ophthalmologist for the latest update on where his eyes are.  So we wait, that is what we do.

I want to know what is happening to my son?  Why is he losing his eyesight?  Why he can’t be like every other 3rd grader and do all the things that they get to do. They all ride bikes and scooters and play sports.  When we go for walks we have to hold his hand because he cannot see the curb to step down or a car coming.  He looks at the other kids and I am sure wonders why he can’t do those things either.   We have been told by the Chief Ophthalmologist that since he is considered legally blind and disabled that he will never be able to ride a bike or drive a car.  These are rites of passages that a child should be able to do.  I can’t help but feel that he is missing out.  He will be provided with a public transportation pass when he gets old enough.  As a mother, that is just something that breaks my heart.  If Nathan does lose his vision, then he is supposed to just go get on a bus?  Where would he go?  Will he be able to have a job?  Will he be able to live on his own?  Will he find someone to love him for him and not because he is naive?  These are all the things I think of late at night when I can’t sleep.  I wonder and I worry.  I want him to be whole and happy and healthy.  And I can’t help feel that I failed in some colossal way. I worry that Nathan will have to live with us the rest of our lives.  However, I know that we will be the lucky ones who get to have him with us for as long as he needs to be.

My family is my life.  I can’t help but feel completely helpless in this situation.  My heart breaks every day when I see some task that Nathan can’t do or could do and now can’t.  I am really doing my best to find the best in these situations, but it is hard.  I am not used to seeing my child’s health deteriorate.  We have to be so careful in the activities that we do to make sure that we are accommodating for him.  I am sure that we come across as the most over protective parents in the world, but when you have a child who can’t see, you have to be.  I want Nathan to always know that he will have the best of us.   No matter what the future holds, he will always have everything we have to give.  There will never be a stone left unturned.  We will always fight for what is right for our son.

He’s my son

I have come to realize that I can’t control everything, in fact there is very little I can control.  It is a frustrating realization, especially when it comes to the care of your child. When you are told that your child is sick, you would move heaven and earth to get them the treatment and help that they deserve.  But wait, you have to do it on the insurance doctors and hospitals timeframe.  I promise you that their timeframe does NOT meet yours.   I have called everyone that I can at the hospital, everyone I can at the doctors and even other professionals to help me navigate this intricate world only to be told we hope it will happen in the next couple of days.  I could almost live with that if I was not told that three weeks ago.

My baby needs help and is not getting it!! What do you do as a parent?  I am forced to sit back and wait.  Wait on someone else to realize that he is my world, my everything, my son and that I need him to get help.  That he will thrive better if provided these resources.  Nathan is losing his vision, and I don’t want to make any bones about it.  He is running into walls and cars.  It is progressively getting worse.  He needs to get as much treatment as possible before the Optic Atrophy takes over and his vision is gone forever.

Right now, the doctors say that he has visual memory.  That is why these postcards have been so important to our family, because one day he will be able to recall that memory that he had.  In the future we will be  able to talk to him about the “journey” he went on as a child and I am sure it will be one of the most memorable things he had as a child.