Holland?

I was thinking of that packet lately. Our Autism Information packet we got from the doctor last year was overwhelming but one of the first things that I found in it/read has stuck with me through this entire first year. It is a poem called "Welcome to Holland".  I think it does a great job of describing the feelings of parents who discover their child has special needs.

It was written by an author Emily Perl Kingsley who joined the Sesame Street team in 1970 and has been writing for the show ever since. Kingsley has written over 20 children's books, hundreds of Sesame songs, and two Sesame home video releases (Elmo Learns to Share and Elmo Says BOO!).  She has won 12 Emmys and 9 nominations through her work with Sesame Street, three EDIs (Equality, Dignity, Independence Award) and a Grand EDI from Easter Seals, and an award from the National Theatre of the Deaf.  She has a son with special needs and as she explained in an interview I read – this poem sort of wrote itself when she was counseling families of other special needs children.

In 2004, Will Livingston wrote a song loosely based on the story, also titled "Welcome to Holland". You can click the link at the end of this post to play his song.

The hardest part for me is not that I can’t find the beauty in “Holland”.  We watch many of our family and friends enjoy “Italy" and the most difficult part for me is we were supposed to go to "Italy" too, but we are not. You will understand after you read the poem.

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

©1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Free embed music player from ReverbNation.com

Peace & Acceptance

One year….

You knew the possibility. You knew the reason you were there and what could be coming, but in the back of your mind and in the deepest crevice of your heart you still hang on to the glimmer of hope that your instincts are off…that you are over-reacting…that you are over-protective…that maybe, just maybe you are wrong. Then they look at you with the most sincere compassionate smile. The kind of smile that says “I think you know this and I don’t want to be the one that tells you but…”…But she doesn’t say anything. The look says it all. Instead she hands you a packet of information in a gold envelope that is about 2-3 inches think and tells you if you have any questions to call and that you will need to bring him in for a follow up appointment to create a plan. Nothing else is said in the room. You all just ...know.

After check out we walked in to the parking lot, Dan holding MJ’s hand and me carrying the packet trying to hold myself together. Neither of us had even looked at that packet yet. We didn’t want to. As far as MJ was concerned that was just another regular doctor appt so the doctor could “see how strong he was growing” and “see if there is anything she could help him/us with”.  And as far as MJ was concerned that is all we wanted him to know.

The car was pretty quiet on the way home. I think Dan and I were afraid if we tried to speak we would burst into uncontrollable tears. As Dan looked at me we briefly made eye contact, then both glanced at the packet weighing on my lap. What in the world could possibly be in a packet this big? Could there really be that much to know? We both had a feeling we had no idea what we were in for but one thing we knew for sure. We weren’t ready for this. How could any parent be ready for this?

I still feel the pain as if the diagnosis were yesterday. We have lived for a year with MJ’s diagnosis of Autism (diagnosed in September2012). We have been through a year of blood tests, medical procedures, MRI’s, supplements, medical evaluations, meltdowns, therapy appointments 3-5 times a week, school evaluations, IEP meetings (Individualize Education Plan), MJ’s eating disorder, ADHD, insomnia, night terrors, people staring, people judging, people distancing themselves because they don’t understand. It….never….stops.

We love our son more than anything in the world. He is so special and unique. But we don’t know if he will ever do some of the things that a healthy kid would grow up to do. Due to his OCD, and lack of patience and judgment he may never drive. His lack of emotional connection and relationship skills may stop him from ever being married or having a family of his own. He may never play sports because he doesn’t know what it means to collaborate. Many people will never appreciate his ability to memorize, ask a million questions due to his inquisitive nature, or identify the make and model of just about every car by the body style.  

I am not trying to sell my son short or limit his abilities. Anything is possible. But when you are living this life daily you learn the best thing to do is prepare yourself for the worst while hoping for the best. The older he gets the more different he will be – the more he will stand out. I try to remind myself that he doesn’t know what he is missing – that he doesn’t know any different. All the while as his parents we know, we see the limitations, the teasing, the isolation, the judging, and it kills us with pain.

This past year we have done everything we can to get what MJ needs – but it will always be a struggle. Kids with Autism go through phases and often regress in one area while advancing in another. It is a vicious cycle. Try to balance that while you are managing the needs of his little brother who has his own delays in development.

For a year I have tried…but just cannot bring myself to celebrate/appreciate this “journey”. Are there special things about my son that he gets from his Autism? Absolutely there are some cool things…like the way he can memorize, the way he can hold an adult conversation and can follow your logic. I love the way he thirsts for knowledge and has a passion for science. But I will not now, nor do I think I can ever be a parent that wouldn’t “change” my son. I would give anything in the world to take the curse of Autism away from him.

We have lived for a year with MJ’s diagnosis of Autism. I still feel that pain. Now it stings even more since MJ’s younger brother JR was diagnosed with his own neurological conditions including speech apraxia and risk of Autism (as of August 2013). Another dagger to our heart.

We understand God gives you struggles to refine you, bring you closer to Him, and show His glory. But in order to grow from what He gives (or allows) you to go through there has to be acceptance. We are sad, we are frustrated, we are angry with God right now. It has been a year and I have never reached acceptance of Autism in our family, and I often still grieve every day. The daily struggles are intense. Our hearts ache for our boys and the pain is often un-bearable. Watching your children go through these struggles and pain is like a knife in your heart.  

But while we are angry, we know we need to run to Him. While we are sad and frustrated, and hurt, and even mad – we know God is still the answer.

It’s a long road ahead that has just doubled in burden. Would you pray with us that God gives us His peace and acceptance? It is a long road ahead and we need to start somewhere.

 

Rest Stop Please!

An hour long commute each way gives you plenty of time to think. Sure you’ve got the radio, the traffic, the thoughts of your to do list, etc. Plenty of light and busy things to keep your mind “occupied”.  But when you have that 2 hours every...single…day…you tend to need something more than just the daily commute “stuff” to keep you going.

I have found plenty of things that I have enjoyed and help me to seize the “quiet” time I am given. I Pray (eyes open people I am driving :) ). I sing and worship. I listen to an audio bible. But lately (the past couple of weeks) NONE of those things have been appealing to me. I have tried and lately just feel that I was getting irritated with those things. Yes – I just admitted that.

I am having an issue doing anything that would keep me connected with God, anything that any “good” Christian would want to do and “should” be doing. Red Flag! What the heck?! What is going on?!  The fact that I had absolutely no desire to be involved in anything that would keep me connected to God is a serious issue for me. I felt my heart is/was completely torn. On one side I know what I need most is to rely on God and trust in Him. On the other side I didn’t want to hear the music, read the scripture, or even be around people that I knew would try and “encourage” me out of this funk I am in. Harsh I know.

The person I KNEW I could run to – my husband. A few nights ago I confided in him and I was not too surprised to find out he is/was going through similar feelings as I am. We talked about how life has gone by this year like the traffic on my morning commute jetting by at 70mph. We feel like we have been driving forever with no rest stops. We have tried several different off ramps only to be taken to another freeway…with more 70mph traffic. Life has been crazy and we just wanted off the freeway for a rest stop!

I love talking to my husband. He gets it. He gets me. Most of the time we are thinking or feeling things at the same time, but also God uses us to encourage each other and bring different perspectives.  We haven’t figured out much from our talk the other night. But one thing we did realize has to do with expectations ….my quote above:   I am having an issue doing anything that would keep me connected with God, anything that any “good” Christian would want to do and “should” be doing. I realized that my our expectations of ourselves and of others was part of why we are where we are at with our mess of emotions. (More to come on that later this week)

We don’t know what this season holds or what to do about the way we feel – but we are working through it. The one thing we did get out of our time talking through our emotions…grace. Sometimes we just need to allow ourselves to go through feelings so God can work on whatever it is He is trying to grow in us. If you read through the Psalms you can read just about every kind of emotion. God wants all of us, and He is always open to us no matter our feelings of confusion, hurt, or even a bit of anger. We are free to struggle. It doesn’t mean we are no longer a child of God just because we sometimes struggle in our walk with Him. The key is to never stop praying, never stop listening for the answer God is trying to give you, and give yourself grace. The rest (stop) will come in God’s time.

What is Syringomyelia?

Before MJ’s MRI discovery in January Dan and I had never heard of Chiari Malformation or Syringomyelia – let alone have any idea what it was. So to understand our journey I thought it best to share some information with you that we had a crash course in when our son’s condition was discovered and surgery was scheduled within 4 weeks.

MJ has been diagnosed with 2 new neurological conditions (Autism being his first neurological diagnosis in September 2012). The first new one he was diagnosed with Chiari Malformation after an MRI on January 11, 2013.

MJ’s second new (and 3^rd total) neurological condition is Syringomyelia – diagnosed on 2/7/2013. His brain surgery was performed to alleviate some of the symptoms and possible complications due to both of these diagnosis.

What is Syringomyelia?

Syringomyelia is damage to the spinal cord due to the formation of a fluid-filled area (called a syrinx) within the cord.

The central nervous system is made up of the brain and spinal cord. The brain functions to receive nerve impulses from the spinal cord and cranial nerves. The spinal cord contains the nerves that carry messages between the brain and the body. Spinal cord injury can occur when there is damage to the cells within the spinal cord or when the tracts of nerves that run up and down the spinal cord are severed. Also known as: Syrinx

• MJ has a syrinx on his spine from T4 to T9 as well as fluid from T9 to L1



Picture from Scripps Health San Diego

 

 


Picture from Chiari Institute

 

Causes

In MJ’s case the fluid buildup seen in syringomyelia is a result of a birth defect (specifically, "chiari malformation," in which part of the brain pushes down onto the spinal cord at the base of the skull).

The fluid-filled cavity usually begins in the neck area. It expands slowly, putting pressure on the spinal cord and slowly causing damage.

What are the symptoms? 

• Gradual loss of muscle mass (wasting, atrophy) – MJ was diagnosed in 2012 with low muscle tone.
• Headache
• Muscle function loss, loss of ability to use arms or legs
• Numbness or decreased sensation – MJ had periodic numbness and pain in his feet.
• Decreased sense of pain or temperature
• Lessened ability to sense that the skin is being touched
• Neck, shoulders, upper arms, trunk -- in a cape-like pattern
• Slowly, but progressively, gets worse
• Pain down the arms, neck, or into the upper back – MJ has/had neck pain and back pain
• Weakness (decreased muscle strength, independent of exercise) in the arms or legs – MJ has this
• Uncoordinated movement – MJ has/had this

Treatment

The goals of treatment are to stop the spinal cord damage from getting worse and to maximize functioning. Surgery to relieve pressure in the spinal cord may be appropriate. Physical therapy may be needed to maximize muscular function.

MJ had a Chiari Decompression surgery to return flow of spinal fluid and slow progression of the Syringomyelia.

Possible complications

Without treatment, the condition will lead to:

• Continued or progressive loss of neurologic function
• Permanent disability including paralysis 

Prognosis

Untreated, the disorder gets worse very slowly, but it eventually causes severe disability. Surgical Chiari decompression usually stops the progression of the disorder, with about 50% of people showing significant improvement in neurologic function after surgical decompression.

As with the Chiari - surgery does not take away MJ’s Syringomyelia – It simply alleviates some of the brain compression and slows the progression of permanent neurological damage.

We will need to continue monitoring MJ’s condition to ensure his syrinx does not continue to grow.

MJ will have increase risks of brain and spinal cord injuries and possible symptoms that may make daily life more difficult.

**Information used from the following sources:

Chiari Institute, Scripps Health San Diego

What is Chiari?

Before MJ’s MRI discovery in January Dan and I had never heard of Chiari Malformation – let alone have any idea what it was. So to understand our journey I thought it best to share some information with you that we had a crash course in when our son’s condition was discovered and surgery was scheduled within 4 weeks.

MJ has been diagnosed with 2 new neurological conditions (Autism being his first neurological diagnosis in September 2012). The first one he was diagnosed with Chiari Malformation after an MRI on January 11, 2013. His brain surgery was performed to alleviate some of the symptoms and possible complications due to this diagnosis.

What is Chiari Malformation exactly?

Chiari Malformation (kee-AR-ee) (CM) - is a serious neurological disorder where the bottom of the brain (cerebellum) is crowded in the skull cavity, and forces the lower tips of the cerebellar hemi-spheres (tonsils) into the hole in the bottom of the skull (foramen magnum). This causes blockage of cerebrospinal fluid (CSF) flow from the cranial cavity into the spinal canal.

• MJ has CM1 (Chiari Malformation Type 1) which is congenital (he was born with it)
• MJ has a Small Posterior Fossa - Back of the skull is too small for the normal sized brain.



Photo from Chiari Institute

What are the symptoms?

• Severe headache in the back of the head brought on by straining, coughing, etc.
• Sleep apnea
• Trouble Swallowing (MJ has this)
• Balance and Coordination issues (MJ has/had this)

Symptoms are due to compression of brain and spinal tissue, disruption of the natural flow cerebrospinal fluid, and increased pressure in the brain. It is not known why, but symptoms can develop at any age and some people with malformations are asymptomatic, meaning they have no symptoms.

 Treatment

• Pain/Symptom Relief - Depending on the severity of symptoms sometimes treatment can be symptom relief such as therapies or pain medications while watching to ensure the condition does not worsen.
• Surgery - In MJ’s case his condition required surgery due to the complete blockage of flow of spinal fluid causing an additional neurological condition called Syringomyelia.

 MJ’s brain surgery performed on February 28, 2013 consisted of the following:

• Craniectomy- A piece of the skull is removed
• Laminectomy- Part of one or more vertebrae are removed (Mj had this on the C1 vertebrae
• Duraplasty- The covering of the brain is opened and a patch is sewn in to make it bigger
• Tissue removal- Cerebellar tonsils are cauterized (part of the brain tissue that is “dead” due to compression)

 


Diagrams from Mayfield Chiari Center

 Possible complications

• Growth spurts can cause new crowding of his brain depending on the rate of his skull growth vs. brain growth.
• It is not uncommon for the skull bone that was surgically removed to grow back (often during a growth spurt).
• Scar tissue can build up around the surgical areas and cause new/additional blockage of CSF (cerebral spinal fluid).

Prognosis

Surgery does not take away MJ’s Chiari – It simply alleviates some of the brain compression and slows the progression of permanent neurological damage.

Chiari presents itself and can be a risk throughout childhood growth spurts. MJ’s surgeon advises we will need to be aware of MJ’s condition and any changes at growth spurts from 5-8 yrs, 10-12 yrs, and 15-18 yrs.

MJ will have increase risks of brain and spinal cord injuries and possible symptoms that may make daily life more difficult.

 

 

**Information used from the following sources:

Chiari Institute, Mayfield Chiari Center, www.conquerchiari.org, and www.csfinfo.org

 

90 days

Today MJ went for his 90 day post-op MRI. The first two scans he had in January there were so many unknowns. Part of me feels those were easier because we didn’t know what (if anything) would be found and we had a sense of hope that there would be nothing. Now it is worse knowing there is something damaging your child’s body and praying it has somehow improved. This is his third scan and it was a tough one for all of us - he is getting weary of it. He hates the tape they put on him for I.V.’s and bandages; he can’t stand the smells. He no longer gets “excited” about going to his “hospital with the hand on it”. How can I blame him? Like his father and me, I am sure it brought back a flood of emotions walking those halls in that hospital again today.

The scan today was tough for so many reasons. We no longer were the family in the waiting room with the hope that nothing would be found. We know what’s in there. We know what it has done and what it could keep doing to him. We know this is a chronic condition that he will live with, and will need to be monitored. The reality of that really settled in today. MJ’s brain surgery in February was just the beginning of his Chiari and Syringomyelia journey.

As we were discussing tomorrow’s schedule with MJ (our nightly routine) and we told him we are going back to the surgeon tomorrow for a checkup and to see his pictures – he got tears in his eyes and his little lip quivered. “Mommy – can I stop getting the pictures and going there? I don’t like that.” Seeing that lip quiver and tears well up just killed me inside.

Tomorrow will be the next steps of our journey. Results that will tell us how successful MJ’s surgery was and how closely we will need to monitor his condition going forward.

Thanks for sticking with us through this continued journey.

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.

Scars

“Zipper Neck” – that is the name people affectionately call themselves in the Chiari world that have been through similar brain surgeries as MJ. I am not too particularly fond of it nor do I plan to ever introduce MJ to that term/description. I don’t ever want to make light of what MJ has been through. Now I suppose at some point in his life someone along the way may use the term, or someone possibly insensitive could use it with the intention of being hurtful. That is okay, because we plan to help MJ understand the story God has given him through this circumstance.

You see, scars show there is a story to tell. And what Dan and I pray to do as MJ grows up is never let him forget that. God knew when MJ was created just what challenges he would face in life, and what he would need to overcome them. This brain surgery is part of who he is now and it is the story God has given him. Scars are a symbol of pain and brokenness, but God can give us peace and purpose through the pain of our past.

The last two months have been a roller coaster for our family. As a dear friend described “the rug has been pulled out from under them”. MJ has had plenty of medical issues to deal with but never in my biggest fears did we ever think he would face brain surgery. God has provided for our family in amazing ways and gotten us through a hurdle in a very scary and difficult time. MJ is still here and doing amazingly well considering all he has gone through in the last month. And although we don’t know the conclusion of this chapter in his (our) life yet – we know God’s hands are all over this.

What our job is now as parents is to help MJ grow up to know that no matter what continued challenges he faces in life - that it was, is, and always will be in HIS hands. We should always give everything over to the Lord, and pray with open hearts to release the power of our own personal stories to glorify Him. That is one of the reasons I write this blog…to share my stories. I pray with each post that somehow God is using it in someone’s life. If we don’t use our stories we are given to share with others, to love others, and to help others understand God’s amazing love then what are our stories and our scars for?

Yes, our scars are a story of pain and brokenness. But God’s scars are a story of forgiveness and healing and the story of God’s unending love. Just as the disciples recognized the resurrected Jesus when they saw His scars, others will recognize the Healer Jesus when we show them ours.