Autism Awareness Begins...

What Blaze Has Taught Me...

 

 

What My Special Needs Little Boy Has Taught Me...

 

1. It's not about how fast you reach a milestone. We are not in competition. It's about setting goals and giving it all you have until you reach your mark.

 

2. There is more than one way to do most things and it's ok if you don't do things like everyone else.

 

3. Raising a special needs child opened a whole new world that I never really knew existed. It's full of amazing, unique, and strong people that have endured some of life's hardest tests and have overcome things that most can only imagine.

 

4. I am learning a second language (Sign language). You really can teach an old dog new tricks!!!

 

5. Some of your biggest support as a parent of a child with special needs will come from complete strangers who have walked the road before you.

 

6. I learned I am stronger than I ever imagined I was and my son is even stronger. He is my SUPER HERO!

 

7.  Education is not a, "ONE SIZE FITS ALL" kind of thing and IEPs can be very complicated.

 

8. Everything is beautiful, exciting, and interesting if you will only slow down long enough to take a closer look at things.

 

9. Blaze has made me an expert calendar keeper and time manger.

 

10. Just because they don't kiss you or hug you doesn't mean that they don't love you. Actually, special needs kids can love very deeply even though they may not physically show it.

 

11. Not every day is good, but if you look a little closer you will find something good in every day.

 

12. Not everyone is going to care about and love your child as much as you do and that's ok. That just gives you a good excuse to love them twice as much + plus some.

 

13. If someone tells you that it can't be done, it's up to you to prove them wrong.

 

14. It's ok to be different, it makes life more interesting. God makes some of us a little different to offset the excessive number of boring people on earth.

 

15. I learned that horse therapy is called hippotherapy. Imagine my face when they suggested Blaze starting  hippotherapy. Do what? ummm...sorry but my kid is not going anywhere near a hippo.

 

16. Doctors don't know everything. Sometimes moms really do know more!

 

17. Miracles do still exist! I have one and I call him my SON.

 

18. We have more than 5 senses. I bet you didn't know that! Me neither, until I met my amazing Blaze. School has taught us wrong all of these years.

 

19. Being deaf/ nonverbal does not mean quiet. Actually, Blaze can be very loud at times. If you are around us and Blaze gets loud please know that I am aware and that  I will do my best to get him to quiet down but PLEASE understand that he doesn't realize he is being loud. Remember he is deaf. When he makes noises it's because it feels good to him.

 

20. There really are angels among us. They often come disguised as PTs, OTs, SLPs, teachers, and advocates. People who really do care and have a heart. Blaze has been blessed with some of the best over these last 3 years. I can't imagine where we would be if they had not been with us every step of the way.

 

21. Patience is a must. Just don't ever pray for it because God will grant it in ways you may have never imagined. I'm proof!

 

22. Blaze has taught me courage. I've had to be strong and stand up for what I think is right and best for my son and at times it hasn't been easy. Who am I kidding??? IT'S BEEN DOWN RIGHT HARD (Doctors, treatment plans, school districts, teachers, laws, rights, etc).

 

23. It's ok to ask for help. The hardest for me is admitting that sometimes I really do need help. It's ok sometimes to ask for help from others. It's ok to ask questions about the things you don't know or understand (even to ask them to repeat it three more times when you still don't get it). It's also ok to ask for a break from time to time, and it's even ok to vent as needed.

 

24. I can drive in Atlanta!!!! Imagine that. I would have never dreamed I'd drive in Atlanta traffic. Now, I do it all the time. I'll do anything for my little boy to make his life better.

 

25.  Every child has potential sometimes they just need one person to believe in them.

 

 

Trust in the LORD with all thine heart;and lean not unto thine own understanding. In all thy ways acknowledge him,and he will direct thy paths. ~Proverbs 3:5-6

I'm excited about Christmas...

How can it be? Really?!?! only 49 more days to go? Woo Hoo! I am so excited. I haven't been this excited since...well I can't remember when. I'm looking forward to the whole Holiday season. I know some say you are suppose to celebrate one holiday at a time...Thanksgiving...Christmas...New Year. Well, trust me I do. Every day is Thanksgiving in my heart.  I'm way more thankful than just one day a year. I thank God every day sometimes all through out the day. Christmas is just one day set aside to celebrate Jesus' birth. I celebrate that every day too. I'm so thankful that Jesus came to this Earth so that sinners like me could be saved. I need more than just one day to celebrate such an event. God has just been so good to me. Oh, and yes New Year too. Every New Year is a new chance to start over fresh and new...that's always a good thing. So I say let's celebrate every day!

When I lost my brother Robby, it never really felt the same at Christmas time. It felt like a dark heavy cloud hung over my family especially during the holidays. Then I lost my Nanny (The heart of the family). My very best friend and the one person who loved me unconditionally. Then one month later, I lost my younger brother unexpectedly. Even though he had just turned 30 he was still the baby of our family.  So after so much loss in such a short time, the holidays didn't feel the same. The joy felt like it left us. We were told many times that we needed to move on(trust me I tried and wanted to),but sometimes that's easier said then done. Until you've walked in my family's shoes, then you could never comprehend what we've gone through. I thought I would never get my joy back. I had prayed about it many times and even questioned where God was in my sadness.  It's still sad to think about Christmas without them...even now.  It honestly is not the same and it never will be again and nothing can change that. We are adjusting and with each year it is getting better. This is the first year that I've been this excited about Christmas in a very long time. So let's celebrate!

Yes, I'm one of those people you've been hearing about on facebook. We've been playing Christmas music already and we've purchased a few gifts for the ones we love. We haven't decorated the tree yet and that will wait until after Thanksgiving day (so our tree won't die before Christmas). I've seen many things on facebook about people not taking one holiday at a time and people skipping over Thanksgiving and maybe they are, and some may think I have. Well, it's not so.  I'm going to celebrate all of these holidays every single day!  If it was up to me we would keep the house decked out all year in Christmas decor (because I love it so much), sing songs about my Jesus,while I  raise my hands to Heaven and Thank God for all He has done for me. That really should be what Thanksgiving and Christmas is all about. What I wonder is how people can celebrate only one day a year... I can't!

Now for the updates...

This week, we took our Blazer back to the Autism center to meet with their doctors ( for a second opinion) and this time they confirmed to us what we had been told by our neurologist and pretty much expected, but didn't really want to. Blaze has autism.  They are recommending him to start a new therapy on top of what we are already doing...so yes even more appointments  but that's ok. I will do ANYTHING and EVERYTHING I can to make Blaze's life as easy, comfortable, and as happy as it can be, even if it does mean therapy almost every single day now. The new therapy (ABA) has proven to work really well for kids like mine. So bring on the therapy. 

This chart may look hopeless if your child falls on the further end. However, it has been proven that children who fall anywhere on this chart can improve with proper and early intervention. Children on Blaze's end may have smaller and less noticeable improvements then those children who are on the other end of the chart. I am a HUGE advocate for therapy. Blaze has pretty much been in therapy his whole life. I credit therapy for him doing as well as he is today and of course he got blessed with the most amazing therapists ever. Three of them have been with us from day one of his journey. I think the more therapy the better outcome. Think of the Autism Spectrum as a rope instead of a chart. Kids that are less severe are at the top of the rope, hanging on. It's still a struggle for them every day to just hang on and keep climbing. Kids at the bottom of the rope have it even harder and it's going to take them even  longer and more time to climb, but with the proper help (therapy & support) their climb may/can get easier then it would be with no help at all. Many can move up the rope (Improve). Then you have a few that won't ever be able to climb (because they may have more to deal with than just autism, have delayed intervention, etc). This is why early evaluations and intervention is so very important and it's worth trying regardless of where your child is on the rope.

Some good came out of the appointment. They asked if I would be willing to take Blaze over to the hospital for some lab work. They are going to test Blaze for several different things. They think he may have some type of syndrome that has gone undiagnosed, that might explain why he has so many different diagnoses. Some syndromes have a link to Autism, so they are curious. They were VERY interested in my Blazer...he tends to have that effect on people. They also referred us to a genetics doctor for more studies. Way back when we first realized Blaze was sick we had taken him to see a specialist over at Emory for an evaluation and she had mentioned then that she thought Blaze may have some type of syndrome, but she never pushed for more testing, and we only saw her 2 times. These tests may or may not answer some of our questions. Regardless, he is still the most amazing kid I've ever known and he has brought so much joy to us all.

My friend Amanda asked me the other day how I stay so strong with all I have on my plate. I've been asked this so many times. I don't think I'm that strong. I just deal with things one day at a time and I give it all to God. Honestly, it's God. He is my strength and hope. I knew when I adopted Blaze that the future was uncertain and that most likely he would need life long care. I accepted him just as he was when I signed the adoption papers.  I told the doctor at Marcus and some of his other doctors, that if this is as good as Blaze will ever be,  then he is already way better than ever predicted. How could I ever complain? However, I think Blaze has a lot more potential than some may think and I've seen my child do several things they told me he would never do. That's God folks! He still hears and answers prayers. He knows my precious baby and he knows my heart. I think as hard as I have worked with this child that God sees my effort and blesses it. Life is not always easy and some don't have the strength I have or the load I carry every day, but oh so many more have so much more to deal with every day. God has carried me each time I couldn't find my feet or strength to keep going on. I just wonder how people who don't have God make it through each day. God is for sure my strength and to HIM goes all the glory.

I had planned to write more but I've got to go. I have plans with my sweet grandbabies this evening.

But before I go, I've got to share my Bookie-Shae's pictures...

 Trust in the LORD with all thine heart;and lean not unto thine own understanding. In all thy ways acknowledge him,and he will direct thy paths. ~Proverbs 3:5-6

Joshua Blaze's CMV Story....

This Is His story...

In Feb of 2012, we got the call for a newborn little boy who needed a foster home. We said, YES! After waiting all day our new little guy arrived (straight from the hospital at only 2 days old).

Right away I knew that something was different about this baby. He was a small baby (5 lbs and 18 inches long) with a really small head. He was also a quiet baby who very seldom cried (which was odd for a foster baby). He didn't seem to like to be cuddled or even touched. He was most content just being left alone. He was not very interested in his bottle and actually was very difficult to feed. He just wanted to sleep ALL of the time. He was jaundiced (like most newborns are) but even after a few days home, he wasn't turning pink like most newborns do.  He actually seemed to get more yellow each day. When I questioned the caseworker about him, she informed me that he was born a few weeks early ( at least 4 weeks early), his mom had no prenatal care, and drugs were present in his system at birth. That explained his uniqueness....I thought.

I called my pediatrician's office and made him a newborn well check appointment. I had to see a different doctor because mine was out on maternity leave. I carried Blaze in for a checkup and shared my concerns, but the doctor didn't seem that concerned at all. She brushed off most of what I brought up. She noted that he did have a heart murmur, but she said that they would recheck that at his 2 month well check (It resolved itself). We discussed his yellow skin and the test showed that his jaundice level was a little more elevated than his hospital discharge papers had, but because he was early she wasn't that concerned. She mentioned that his head measured a little small, but that they would recheck that later. I  pointed out a couple of red dots that he had on his belly. She wasn't even concerned about that. She said the dots were probably just going to be birthmarks. She said that his system was just immature and  just needed extra time to catch up. I left the office and prayed that she was right and that he would be fine.

Over those next couple of days he seemed to get sicker acting and looking. He also developed more spots. They turned out to be hemangiomas (strawberry marks) which are pretty common, except for the large amount that he had. By age one he had over 70.

My little peanut

By week two, I knew without a doubt that something was wrong with our baby. I called the pediatrician's office again. Thankfully, my pediatrician was back from her leave and was willing to work us in. She walked in and I explained to her all of the same concerns that I had shared with the other doctor. The minute that I took off his clothes, she got this serious look on her face. She said, "His stomach doesn't look normal". She pressed on his tummy for a while and then called other doctors in to do the same. They talked among themselves (doctor talk). Then she asked if I could take him over to the hospital for some scans and lab work... I did. Then I went home and waited anxiously by the phone. She called and said that his blood work showed that his platelet count were not normal and his blood was not clotting as quickly as it should. The scans showed a hernia and that his liver and spleen were very enlarged (grossly enlarged she said). His liver was not functioning properly and this was causing his spleen to swell. Blaze was very sick. He was admitted into the hospital. Blaze tested positive for a condition called congenital cytomegalovirus better known as cCMV. Blaze's birth mom had a CMV infection at some point in her pregnancy and didn't know it and it had passed to Blaze.

CMV wreaked havoc on our little boy's system and affected many of his organs. We were sent to see doctors all over the state of GA. He saw numerous specialists before we got the full picture of what our little boy was dealing with. We were told his CMV was on the more severe end (I'm glad they were wrong) and that he might not even live to be over 4 months old. If he did, he would probably never be able to set up, walk, talk, see, or hear. He would most likely be severely disabled.

CMV caused Blaze to have cerebral palsy (CP) with hypotonia, thrombocytopenia, epilepsy, microcephaly, mild hydrocephalus (doesn't require a shunt), hypoplasia of the corpus callosum, hepatic fibrosis, cirrhosis of the liver, splenomegaly, sensorineural hearing loss (bilateral), moderate vision loss, significant feeding problems with dysphagia, chronic digestive issues, gastroesophageal reflux disease (GERD), hemangiomas of the skin and subcutaneous tissues, bowel and bladder incontinence, autism, and global developmental delays.

Blaze has been under the care of many specialists since his birth. He is under the care of a hepatologist, neurologist, neurotologist, epileptologist, gastroenterologist, orthopedic, nutritionist, allergist, developmental pediatrician,  psychologist, ID specialist, audiologist, ophthalmologist, ENT, and a primary pediatrician, 

Yes! That is why we are always busy and on the road. 

Blaze has also been in therapy (OT, PT, SLP, and Oral Motor) pretty much his whole life. He has been blessed with some amazing therapist who work VERY hard to help him to be all that he can be. He has also worked with the Babies Can't Wait Program (up to age 3), Emory Neuro-Development Center, Marcus Autism Center, Georgia Sensory Assistance Project, WGC Comprehensive Communication Clinic, and the GA PINES program. I truly believe if Blaze did not have the team that he has, that he wouldn't be where he is today. We are so thankful for them!

The Day We Said
Goodbye!

Jan 19, 2014

After 23 months, Blaze's liver functions 

had improved enough that he was released 

from the transplant team at CHOA!!!!

All of these diagnosis are just labels. They do NOT define who Blaze is as a person because he is so much more!  A doctor at CHOA once said, "Blaze looks way better in person than he does on paper". We are so thankful for that! I share his story to show you just how amazing he really is and just how far he has come! Despite all of the obstacles that life has thrown at him, he never gives up! Blaze is a fighter! He is a survivor!

He did learn to set up, crawl, 

walk, and he signs to talk! 

He done these things 

in his own time.

Blaze is a kid! A GREAT kid! He is funny, he is adorable, he is silly, he is curious, he is LOUD, he is mischievous, sometimes stubborn, but almost always HAPPY! In many ways he is just like any other kid his age. He has filled our lives with so much joy!  Right now, Blaze is not aware that he is a little different. He will probably have to do things and learn things in a different way than most, but that's OK. I want to teach him that it's Ok to be different, because really we all are. God makes NO mistakes. God has a plan for our little man. We may not see it now or even begin to understand it, but God does. God knows Blaze by name and loves him dearly! Blaze is fearfully and wonderfully made! Psalm 139:14

Blaze's birth mom 

surrendered

 her rights to him when 
he was 7 months old

and on 

Oct 23, 2013 

we adopted our

 little SUPERHERO!

~~~~~~Update Time!!!!!!~~~~~~

Blaze is five now and he is doing GREAT! His health is stable and he is progressing at his own pace! He still has regular follow ups with his specialists and he still has therapies weekly, but he takes it all in stride... He is awesome like that! He is in kindergarten now and he LOVES it! He is learning sign language to communicate and we are learning too! He is also learning to communicate with a communication device- Nova Chat (with people who don't know ASL). He continues to amaze us every day! We are so blessed to have this little boy!

More info to help you better understand what makes up our AMAZING little boy...

Cytomegalovirus CMV
Cerebral Palsy (mixed)
Malformation of the Cortical Dev of the Brain
Hypoplasia of the Corpus Callosum
Polymicrogyria
Hippocampal Sclerosis
Microcephaly
Thrombocytopenia
Hepatic Fibrosis
Cirrhosis of the Liver
Splenomegaly
Intractable focal Epilepsy
Hypotonia
GERD
Food Allergies 
Hemangiomas of skin and tissues
Dysphagia
Feeding Disorder of Early Childhood
Failure To Thrive
Global Developmental Delays
Autism
Sensory Processing Disorder

My friend Tracy over at www.cmvfoundation.org

created this ribbon for our Joshua "Blaze".

Copyright © 2016 Sandy Howell

He is a SENsational kid!...

This was our daily update to Mrs Cindy, Blaze's buddy over at www.whoirun4.com 

Today Blaze has worked VERY hard in OT and PT. He worked mostly with sensory boxes. He even set in one of the boxes, which made his OT VERY happy ,because it was full of sensory stuff that would normally gross Blaze out and send him either vomiting or in a melt down. Not today! 

He also matched all the balls to the right colored baskets, put puzzles pieces in their correct places, and stacked boxes. This was by far his best day ever in OT. His OT was so excited today. She just kept hugging him and bragging on how far he has come.

 In PT he worked on his balance and strengthening his legs. He enjoyed his PT rolling him up in a blanket and swinging him back and forth. He still struggles with movement he can't control, but  today he did great. Now every time he sees a blanket he wants me to swing him in it. We will all have sore arms tomorrow:) Now, he is napping. It's been a good day!

 Trust in the LORD with all thine heart;and lean not unto thine own understanding. In all thy ways acknowledge him,and he will direct thy paths. ~Proverbs 3:5-6

Will he walk?...

After waiting almost 2.5 weeks we finally got the results from Blaze's brain MRI. Dr Keller called on Tuesday to discuss those with us. She said, Blaze's brain showed several white spots/matter on both sides that she believes to be scar tissue left from the CMV virus that he was born with. She also said the corpus callosum part of the brain was not as it should be so she diagnosed him with cerebral palsy which is probably the reason why my precious baby isn't walking. Most likely the CP was also caused by CMV. I asked her if she believes Blaze will walk. She said, she believes he will...eventually. She said, maybe not this week, next month, or possibly this year, but she believes he will. She said she is very pleased with how well Blaze is doing. He is way better than she first predicted and much better than most of the CMV babies that she sees. She told us to keep doing exactly what we are doing (therapy, therapy, therapy and lots of TLC).  Also, the good news is that his brain won't get any worse than it is. It will only get better from here. The neat thing about the brain and also the heart is that they can find ways to bypass damaged areas and create new routes and connections. I thought that was pretty neat. The body is an amazing thing.

She also said that she believes Blaze is autistic. She referred us to the Marcus Center. The same place Baby Girl (our past foster) went. We are going to go ahead and start seeing a developmental pediatrician, while we wait to get in at the Marcus. The wait for Marcus can take up to a year, but it's well worth the wait. I wouldn't want to go anywhere else. It's the top place here in GA and the SE. 

The results weren't what we hoped for, but I wasn't totally surprised either. It answered many of the questions that I've had floating around in my mind concerning my little boy.  At least now we have some answers and now we know what we are working with. 

 Trust in the LORD with all thine heart;and lean not unto thine own understanding. In all thy ways acknowledge him,and he will direct thy paths. ~Proverbs 3:5-6