Greater

Our family loves music. MJ especially loves music. There is something about it that seems to help him really connect with things, and connect with his emotions. We are very intentional about having time in our home where we just listen to music – music therapy. It helps MJ and JR with their communication, but it also helps them feel connected to us – our family not only bonds by singing music together, but it helps us re-focus on what is important.

You can bet every time we are in the car we are very intentional about what we listen to. Not that we always put CD’s in, but we make sure that the stations we listen to are always focused on the things we feel are important.  Each time we have been in the car and feel like we are facing some heavy stuff in life the music is that much more important. Often times you will hear the boys singing in the back seat to songs and it warms my heart so much.

The day we came home from the neurosurgeon with MJ’s brain surgery date scheduled we were in the car, but the music was not my focus. The fact that we had a surgery date was hitting Dan and me really hard. We tried everything we could to maintain our composure and stay strong for the boys. Knowing we were facing a 45 minute drive home in rush hour I had to take deep breaths and pray to hold my composure. But the music was just in the background and I wasn’t focusing on it like I probably should have been – just too many things running through my mind and my heart.

Then all of a sudden I hear MJ start singing in the back seat, and JR (in his mumbly attempt) joined in. The words and the fact that MJ (the one about to have brain surgery) was singing it – I knew immediately it was God.

You see – the song talks about God’s miracles. The fact that no matter what is going on in life – God will always prevail…ALWAYS. He is Greater, He is Stronger, He is higher than ANY other. It was a message from God alright, and he used MJ singing in the backseat to deliver it to our hearts.

That song has become a cherished part of our lives. It became our special family song. Each time we hear it, or play it, or sing it – I told myself (and was very intentional about making sure) that it was always to help MJ remember God WILL get us through. The truth is I knew we all needed to hear it.

Every time we hear it on the radio we turn it up and the whole family sings. I have it loaded on my phone. Every doctor appointment and even in pre-op the day of surgery….any time we need it – it is played…and we sing. Even before surgery when the outcome was unknown…Even now not knowing MJ’s prognosis….this song is our song. We sing it with greater feeling and conviction than any other.

It’s about God’s miracles. It’s about the fact that even in the troubled times God always wins. God is stronger than any other. Nothing can stand in the way with God on our side. Through these last few months this song and the message of Truth has been amazingly comfort to our family.

Tomorrow will be the first time I go back to singing vocals at our church since MJ’s surgery. I looked at the set list (list of songs) last week and saw who I was singing with and my heart skipped a beat…God was right here again reminding me of His miracles, and bringing everything back full circle.

How appropriate that 6 weeks after MJ’s surgery, and the first time I am back to singing praise and worship vocals at church – that this would be one of the songs in the set. How even more special that I get to sing it with one of my sweet friends Robin who answered the tug in her heart from the Lord to walk this journey closely with me at the hospital on surgery day. I couldn’t ask for a better way to sing praise to God, and Honor him for His miracle in my son.

If you see me crying through this song up there tomorrow- you will know why.
 

Silent Struggle: Restrictive Eating Disorder

When MJ was a (newborn) baby we struggled with his feeding in the beginning due to being re-admitted for jaundice. But we got through it and within a few months he became a chunky food loving baby and young toddler. I still remember his little nose being orange from eating so much sweet potato and squash – his favorite baby foods. Or the time he was a toddler and we had to stop him from eating too much spaghetti because I was afraid his little tummy would explode (we are pretty sure he was filling up 2 hollow legs that day…lol).

But somewhere between 2 and 3 years old MJ’s eating habits drastically changed. He became resistant to trying anything new, and even began refusing foods he had previously loved. He would often gag and make himself throw up at the sight, smell or even the thought of eating some of the foods we tried to encourage him to eat. He would push plates away and scream as if he was afraid the food would hurt him. Once he was able to speak a few words to communicate he would scream and cry (Hot! Hot! Owie!) and we would double check the food and it was barely warm. This became a daily struggle.

We tried to work through what we thought were “phases” but anything we tried often ended in failure and often was violently rejected. As MJ grew there were times where his height was in the 90^th percentile of his age group while his percentile in weight was getting lower in range, at one point only being in the 40^th percentile. Sounds healthy until you consider he was very tall in the 90^th and his weight only in the 40^th. He was not proportioned and what we thought was a phase of picky eating became a concern for his health.

MJ’s doctor has worked with us for the last year and a half to keep an eye on his eating situation. We get periodic lab work to check his nutrition and vitamin levels. Surprisingly (and a great Blessing!) is that he is not in the range to be considered “malnourished” or “underweight” though sometimes I feel he teeters on the edge of it. The only deficiency he has at this time is low iron.  We tried to supplement with vitamins – but because everything is taken by mouth none of our attempts have been successful.  Gummy, chewable, dissolvable, liquid, disguised in food – you name it we have tried. He just can’t keep it down.

As a part of MJ’s Autism he has what is called a “Self-Restrictive eating disorder”. Due to MJ’s OCD (obsessive compulsive disorder) and his sensory issues (all a part of his Autism) there is a high level of anxiety and even fear in eating varieties of foods due to temperatures, textures, colors, and even packaging. If MJ feels like his needs are not being met with his food he has a meltdown. It is important to know that a meltdown in an autistic child is NOT a temper tantrum. If things are not perfect or the way he wants them he feels completely out of sync as if his entire day is ruined and he can no longer function. Due to the amount of anxiety his world comes crashing down and he cries out in desperation for some sort of control and feeling of normalcy in his little world. Some of MJ’s daily behavior and struggles with food are:

1.       He always eats on one color bowl/plate (always blue) and has to be the one that picks out his fork/spoon (with the cars on it)

2.       He drinks from the same cup every day.

3.       All food must be room temperature – not too warm, and not too cold.

4.       His food has to be perfect – If it is a sandwich NOTHING can be sticking out past the edge of the bread. Cheese always has to be on top (if he has meat on the sandwich).

5.       Hot (turkey) dogs he eats “cannot have a curly end on them”.

6.       Food must always be presented in the same way every time. Sandwich always has to be cut in squares with crust cut off– don’t switch to triangles!

7.       The food he eats always has to be the same brand. Don’t try to switch brands on him or he will stop eating it because it is different.

8.       If labels or packaging changes on a food he no longer will eat it because it is different (even if the food inside is the same).

9.       He has a huge issue with textures – nothing lumpy, crumbly, chewey/jiggly.

10.   Color issues – (ie: if the scrambled egg was cooked a bit long and has brown on it he won’t eat it).  If a food is colored for fun and he knows it is not natural he won’t eat it (Yogurt isn’t supposed to be green in his mind it must be bad because that is not natural).

Due to MJ’s anxiety the list of foods he will eat currently is only about 15 foods long. Scary isn’t it? Our attempts to help him at home even with training from a specialist has had little success. At this time the only thing that can help him is professional feeding therapy. Unfortunately there is a severely limited number of feeding therapists available. There is only about 3-4 feeding therapists in our area and all have long waiting lists (he has already been on a waiting list for 2+ months). I was on the phone for 2+ hours today trying to get help and didn’t get anywhere. There simply is not enough providers out there.

Imagine how hard it is to deal with your child’s health when you can’t get them to eat balanced and you can’t get any help for him. Imagine even more how much more difficult it is in social situations (when your child already has social issues).  If we are invited to someone’s house for a meal it’s hard to explain that your 5 year old is not simply picky, spoiled, or intending to be rude but he has a diagnosed (and very wearisome) feeding disorder.  The silent struggle that no one sees because they are not involved in your life on a daily basis.

As parents it is hard not to feel helpless when you feel you are doing everything in your power and it is not improving the situation. On a daily basis you just have to move forward and do the best you can while putting the struggle out of your mind. You have to focus daily on things you can control and celebrate small successes as much as you can  – but on days like this where I have to stop and look at the bigger picture it quite frankly scares me to death and brings me to tears.

Lord I know he is in your hands. Praying for an opening for feeding therapy soon before it starts affecting his health more seriously.

One Step At A Time

MJ had his follow up appointment with Phoenix Children’s outpatient physical therapy today. He has made great progress but still needs work on the neck extension. I just love how they do kids PT by playing games to get them to do what they need. I wish they did that with adults!

MJ’s therapist Cori used bean bag animals and held them above MJ’s head to get him to do the neck extensions. He had to extend his neck to look at the animal before he could reach up to get it and use it to throw in the basketball hoop. He loved it and had a lot of fun.

She also had him use a large ball on his stomach and roll himself across the room a few feet (while she held him) to retrieve an animal from the ground and bring it back to the container. This helped his neck extension because he had to

look up from the ball to see the animal. I have to tell you when I saw her get out the ball I thought to myself there is no way he is going to go for this. Before surgery any time he was faced with activities having to do with balance or things that made him feel unsecure his anxiety would take over and he would go to tears. This time momma went to tears (silently from my chair in the corner) when I saw my little man just go for it with only a little hesitation. This surgery has already made a difference in his balance (taking some of the pressure off of his brain) and his feeling of security with that balance. Blessing counted.

But it was a bittersweet visit……

The first day MJ started walking after his brain surgery I was celebrating. Then I watched how he was walking and that lump came back in my throat. He was walking – but something wasn’t right. When he walked down the hall in the hospital he was swinging out his right foot wide / to the side and almost walking sideways with it (pointing his toes inward). The in-patient physical therapist also seemed concerned but we all decided maybe he just needed to get his sea legs back and that maybe after more walking and building up his strength that it would eventually go away. As you may recall MJ was sent home with a walker from the hospital because he was very unstable with his walking and seemed to have weakness in his right foot/leg.

MJ’s walking has gotten strong enough that he doesn’t need the walker, but as a mother and watching him every day my feeling was there is still something to be concerned with. We always knew he walked different (mostly toe walking) due to his sensory issues with Autism but this walking was telling me something was not right – it was different.

When MJ saw the outpatient therapist Cori (same one we saw today) about 10 days after surgery she had discussed with me on her first evaluation some of her observations with his walking and it matched concerns Dan and I have had for quite a while. Today I talked to Cori about MJ complaining of foot pain and her opinion on his walking. He hasn’t shown any more improvement with the walking issues so we now need to address it.

MJ trying to balance on one foot.

MJ’s right leg is very weak compared to his left side. He cannot balance on it hardly at all. He drags that leg when he plays on the floor. He doesn’t lift his toes enough on that foot when he walks and his toes catch on the floor often which causes him to trip.

Notes will be sent to the neurosurgeon tomorrow morning. Cori is recommending a leg brace for MJ to correct his walking and indefinite physical therapy. I am having major mixed feelings as a mom. I am relieved someone like Cori is listening and validating our concern but at the same time I feel like this is a setback for him. Just more evidence that he has a lifelong condition and we cannot predict how it will affect him. It is likely that his walking problem is a result of his Chiari, it could be neurological damage that is showing as a result of his spine compression.

I just have visions of my sweet boy having to wear that leg brace. It is going to be a major struggle for him. Please pray for his anxiety and sensory issues as we approach appointments to have a brace fitted and made for him. I am very concerned about how he is going to handle this.

Thanks again for all of your prayers and support and for hanging with us through this ongoing journey. We still need all of you!

The Other Side

Preface: Some of you may already see that this is a blog/story about Autism and not want to read just one more story or parent advocating for their child or children on the spectrum. Those that know me understand I am not one to push an agenda on anyone. But I ask you this as my friends – please read this. Because for every overcharged, off the charts, super pushy advocate you may have read about or come across there are real stories, real families, and real struggles from thousands of people and families who struggle in silence. Thank you and God Bless.

For days I have been trying to decide how I feel about today. So many people out there in my shoes are choosing to spread the word, create awareness, even celebrate….I just don’t know that I am there yet.

Today is World Autism Awareness Day.

This is the first time we have been on this side of the “awareness”. A year ago (although we had strong indications) we didn’t know we were part of the growing Autism family. What we knew the past couple of years is that our oldest and dear precious child MJ was struggling, and everything we were doing including incessant prayer wasn’t “fixing” the situation.

Before Autism touched our lives we were just like many of you. We didn’t understand the seemingly epidemic, we didn’t understand the struggles, and we certainly did not understand so many parents feeling the need to advocate or bring “awareness” to their child’s condition. We did not even begin to know or understand Autism and how it can affect families. We didn’t know Autism. We just knew our little boy was struggling with something and we needed help.

MJ was pre-diagnosed with Autism in July 2012 and officially diagnosed with Autism in September 2012. He was diagnosed by the Development Pediatrician at one of the best pediatric neurology clinics in the country: Barrow’s @ Phoenix Children’s Hospital. I tell you this because there are many families who seem to be confused by his diagnosis…even questioning it. Yes, MJ is Autistic. He does not have Aspergers or PDDNOS (Pervasive Development Disorder not otherwise specified).  He is high functioning, but he has Autism.

Why does MJ to many of you seem like he is “normal” or “typical”? Autism has several different levels of severity, with several different symptoms, and it can affect every child differently. It is a very mysterious, confusing, frustrating, and heart breaking disorder. The doctor told us he is high functioning because we work very hard every day (even before his diagnosis) and God has blessed us in many ways being able to help MJ improve. She told us he absolutely has Autism and that his high function is "a testament to your parenting". We call it a testament to God's blessing in our life.

If I could have all of you live in our shoes for 2 weeks (or more) and see our struggles I would. There are things that happen in our daily lives that you never see. There are struggles we deal with every day that we work very hard to manage to help MJ through life. For so very long I have wanted to talk to all of you about it. But when I get myself to “make the list” of our struggles it just overwhelms me with emotion.

I am not here to advocate or be an activist. I just want people to understand the struggles, and understand Autism is a real condition with very sad and silent struggles. I am just a mom who is now on the other side sharing her story, sharing MJ’s story.

Tomorrow I want to share with you our daily struggles so you can get an idea of what families go through – what our family goes through. These silent struggles often happen behind closed doors.

I pray that sharing our story will simply bring understanding, compassion, and possibly comfort to others who may be struggling as well.

One Month Post Op Update

One month ago today MJ was being transferred from ICU to a neuro-care room after his brain surgery. It seems like just yesterday Dan and I were tag teaming going back and forth to the hospital each night. When I look back at my blogs from those days/weeks it is amazing to see how God carried us through. Though the first few days were scary and challenging - God has given us small victories to get us through to the next day/week.

The first week at home was extremely challenging. MJ was in a lot of pain day and night. He had a lot of nausea and vomiting, and no energy. We encouraged him to walk when he could to build strength but he was extremely unsteady due to the brain swelling (the location of his surgery in the cerebellum controls balance and coordination). The hospital sent us home with a walker so he could gain strength and confidence with his new balance. We had one day at home (day 2 at home) where MJ felt pretty good and was even able to sit outside to get some fresh air. Unfortunately the pain came back fierce and the rest of the week was a challenge. This was the point the neurosurgeon told us the next month could be very unpredictable and pretty much a roller coaster through the brain swelling and healing process. Our days and nights were spent trying to be pro-active in staying ahead of his pain by alternating meds (a challenge in itself when you have a child who has color/flavor/texture aversions to anything that goes in his mouth).

By week 2 we noticed a definite pattern with his pain which made things much more manageable. Pretty much he woke up with pain, and started getting pain early evenings every day. This allowed him to be able to gain a bit of endurance during the day when the pain was low/tolerable. Although he had periodic setbacks, he was able to gain enough strength and confidence in his mobility that he was able to finally walk around at home without needing the walker!

Week 3 and 4 MJ has been improving a bit each day. His endurance has built up nicely and his pain is periodic and manageable. We now know what triggers his pain and are teaching MJ what to avoid and how to be careful. He cannot move his neck in certain positions or over-exert himself because that will bring on pain. His incision is losing some sutures that came to the surface and looks absolutely beautiful.

Today was his first day back at his special needs preschool. Having him out in the “real world” away from where we can protect him all of the time still makes me nervous. Because of his surgery and the current state of his spine being compromised due to the Syringomyelia (cysts on his cervical and thoracic spine-post coming soon) he is at an increased risk for brain and spinal cord injury. Pretty much if he takes a fall where he hits his head wrong or jars his back he could end up with permanent neurological damage. MJ still has a long road ahead since this is a lifelong condition and he is not out of the woods yet.

For now we are counting our blessing that he has come through this surgery so beautifully and are praying that we will see positive results at his post-op MRI in May.

As always - your prayers and continued support are completely amazing. Thank you from the bottom of our hearts.