What now?

I know when someone gives me news about their life that isn’t the best news, sometimes it is hard to know how to react. You want to encourage, you want to know if they need anything – but then you think should I give them space? Am I meddling if I ask how everything is going? Will I get them upset if I ask questions or should I just not make them talk about it? Those are difficult things to know and many times you can come to the conclusion it may be best to just leave things alone rather than take the risk of doing something wrong or upsetting them.

Can I tell you something from the other side? From our personal perspective – We would rather be overwhelmed with good intentioned people wanting to love on us – then feel alone when no one reaches out for fear of not knowing what to do to help. Does that make sense?

Relationships can be difficult – and supporting a person through a struggle in their life that you have no experience or knowledge about can be discomforting. I totally get that.

So I wanted to list some things that would be helpful to our family and MJ as we travel this new journey with his diagnosis of HFA (HighFunctioning Autism).

All we ask is a few things from you...

1.       Please give us permission and time to grieve through this. We know you all want to be encouraging. We know there is a lot of help and programs and “God can do anything”. But we deal with and see daily struggles in our son that no one knows and sometimes more than anything we just need permission to be emotional and sad about our son and our family having to struggle through this.

2.       Please forgive us if our emotions sometimes get in the way of our communication. We want to be careful how we speak – how we write – and how we deal with our relationships. But there may be times where our emotions get the best of us and our communication may not come out as good as we wanted it to.

3.       Please ask questions. We want to share with you. We want to help people understand and we want to let you into our lives and know our story. We are more than willing to answer questions about MJ himself or how our family is dealing with things.

4.       I know this goes without saying – but if you are in a position in his life where you have a relationship with MJ, please don’t feel the need to treat him differently. If you are in a position of leadership or teaching in his life we will be communicating and working directly with you on his special needs as we continue to discover them.  

5.       Please read our blog and feel free to share it with others. Writing and sharing our story through the blog helps give MJ’s situation purpose. Reading the blog and sharing with others will help us touch other’s lives and hopefully inform, encourage, and inspire.

6.       Please follow your heart. So many times all of us dismiss the urge to say something or give a hug when we felt led. Please don’t ignore that. Please follow what God places in your heart if you feel led to encourage us (or anyone) in any way.

7.       Please pray for us. Many of you have been praying already when I have asked and you didn’t even know why. From the bottom of our hearts we thank you. We absolutely felt your prayers and would love it if you are willing to continue.

This is a huge step that we feel we are taking opening up our lives and MJ’s life and sharing so much with everyone. It is a step in vulnerability that is uncomfortable, and foreign to us. However we know without a doubt that God has put this in our lives for a reason, and is leading us to be completely open and share this story for His greater purpose.

Psalm 59:17 (NIV)
You are my strength, I sing praise to you; you, God, are my fortress, my God on whom I can rely.

MJ's Story

When you dream of being a parent and that day finally comes you are overflowing with excitement, anticipation, and dreams for the little miracle you created. That perfect little child with ten fingers and ten toes is full of amazing potential to live an incredible life. As a parent you have dreams of watching the milestones, nurturing their growth and helping them experience the joys of this world.

It doesn’t always turn out the way you think it will. Sometimes it is better…sometimes it’s not. We all go through the adjustments of sleepless nights and periodic fevers; the realization that your life is no longer about you – but truly all about them. In the moment those things may seem overwhelming, and maybe not the greatest part of being a parent. Then we all look back and realize how special those moments really are. Those are not the “not so great” moments I am talking about. I am talking about moments that (thank God) not every parent has to go through... moments when you realize the road you thought you were headed has suddenly taken a left turn, and it looks like it is even more of a jagged road ahead.

This is our story. This is our oldest son MJ’s story.

It was a little over a year ago in the summer of 2011 when my mother’s instinct came bubbling to the surface like a volcano that had been churning for months. I will never forget that day. Prayer after prayer for our 3 ½ year old child and we felt lost – we felt helpless. Then the day came that God whispered in my ear “you are right, something is wrong”. There was no doubt in my mind it was God. That is the day I came to the realization that no amount of excuses, explanations, or dismissal from others could change what was going on. As a mother I couldn’t be in denial any longer – I HAD to do something. Something wasn’t right. Our child needed help – we needed help to figure out how to help him.

From that moment I had a fire in me like you wouldn’t believe. But we had no idea where to begin or what it even was – so we prayed – and He answered. God led the way. He led me to a person that understood and had been through what we were going through. It gave us a direction – a place to start. When I researched and read (from reliable sources) it hit me like a brick wall. So many of the things that we never would have linked together suddenly all fit together like a perfect puzzle. The picture in that puzzle was scary. The picture in that puzzle was devastating. The picture in that puzzle… was our son.

It was a little over a year ago we started the journey of finding answers. It was a little over a month ago we started getting (official) answers. Since the day we had an appointment set with a specialist Dan and I asked ourselves how would we handle the results? What would we do? What would be best for MJ? It didn’t take us long to know that God had a bigger plan to use MJ’s story for others. How that looks we don’t know yet but one thing is for sure – God made MJ very special – and we will honor Him for that!

Dan and I both knew immediately we needed to share our story, and continue to openly share our journey from this point on. Trouble is the past month since our appointment I just haven’t been able to get myself to do that. I have struggled with opening up, and struggled with “outing” MJ. I have just prayed and prayed on what to do...how to do it.

My hesitation has been that what MJ has is something that is often misunderstood – to some even controversial. The few people we have shared it with have sometimes been skeptical, confused, and even turned away. All I can tell you is that we have probably at some point been in all of their shoes so we don’t blame them. Now we are on the other side and we realize until you have been there – until you have had first-hand experience or a close personal relationship with an individual who suffers from this - it is impossible to understand or to know what a family goes through. We have suffered through struggles in silence this past year and it is time for us to start sharing.

MJ is being diagnosed with High-functioning Autism – “HFA” for short. Most people who don’t know anyone with Autism think of individuals who have severe symptoms when they hear that diagnosis. My explanation to you in one sentence is this: 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.

Those of you who have met MJ may be even more confused by this diagnosis. Trust me - we have been in your shoes – we know – and we don’t expect you to understand, we don’t blame you if you don’t know what to do either. I feel part of our mission as a family is to use MJ’s story to help people understand – to educate. God put this in our lives for a reason and we will honor that – we will honor Him. So we will share MJ’s story – we will share our journey. You will walk with us step by step – and we will learn and grow together.

Please look at our next post about what you can do for MJ, our family, and other’s affected by Autism.