It's OK to Not be OK

It's unusual for me to share an inward look at the burden I carry in the deep, deep hidden compartments of my soul. I normally only share my surface level struggles and most of my triumphs.

I have been sitting with difficult feelings for the past few months. My natural inclination is to write when torment comes my way, but I hadn't found the resolution yet. I almost never blog unless I can paint the rainbow amongst the clouds. It's who I am. Stand in the rain, but remember His promise of sunshine afterwards. 

Beware the Crystal Ball

I've spoken about the crystal ball before in one of my previous blogs. It's that nasty fortune-telling apparatus that jerks you out of your comfortable daydream that things are going swimmingly and everything is in its place and as it should be. 

You may have guessed it by now. I am talking about my life with autism and the never-ending fear of the pending future that comes with it. 

Most of the time, I am fine and happily living in the present. I am constantly assessing where my son measures in accordance with his peers - "How far do we have to catch up academically? How many years do we need to make up for in his social development? What are the goals we should set over the next 6 months?" - and so on and so on. 

We make goals. We crush goals. That is our norm...most of the time. 

It wasn't until about two months ago that AJ started bringing home worksheets, specifically, math worksheets consisting of basic addition. 1 + 1...

He couldn't do them. I had found our wall. It didn't matter how many times I had drilled him, how many diagrams or building blocks I used, not even on a number line or using our fingers. He couldn't do it. Just when we had the slightest bit of success, we would start up the next evening and it was like I was introducing it all again for the first time. 1 + 1...

Let that sink in for a minute...my 8-year old couldn't add together 1 + 1. 

You can imagine what happened to me over the next two months. The crystal ball came out, slapped me in the face and told me "How dare you hope for a brighter future than the one you've got. Stop trying to wish for a different set of cards and instead accept the hand you've been dealt." 

How Low is Low?

My mind started running away with my emotions. Sadness and emptiness started to settle in as I gave space to thoughts of a dark and a less than promising future. 

The year 3 (2nd grade) curriculum requirements came out for the end of term and the teacher stressed to the parents that the children must learn all of their multiplication tables by the end of the year. MULTIPLICATION! What?!?!? 

I had this visual in my head that all these children were jumping out of their starting blocks racing towards their lives while AJ and I were left standing at the starting line watching everyone race off into their future. 

I put a lot of stress on education. I equate having a solid education with being able to go to college and get a good job. A good job means a good living and having your own home. It ultimately means being successful. Success equals happiness. In my mind, AJ's pending future wouldn't end in happiness, which inevitably meant that mine wouldn't either. 

I am constantly bombarded with teachers and advisors telling me it's ok that AJ isn't where he should be as long as he is progressing and moving forward. It would just be at a different rate than others. While all of that may be true, at some point there is a cut-off though. It's not the here and now that scares me, it's the cut-off.

Yes, he can have an aid all the way through into high school. He can have someone sit with him and break down his homework for him, ask him questions in a different way that makes sense to him, and keep him on task. Yes, he can have his homework specified to his ability level and yes, we can plug in holes as we move along in his curriculum. At some point though, no one is going to be allowed to hold his hand. He can't go off to college with a para, and last time I checked, he won't be offered an assistant to stand next to him at his job prompting him to stay on track and breaking down each of his tasks for him. 

AND please don't send me links of these happy, pleasant videos of all these kids with autism washing cars for a living at a business that only hires handicapped folks thinking you have just solved all my problems. I want you to think back to the time that you first held your beautiful baby in your arms or saw your first sonogram. I can bet you were thinking about soccer games, sleepovers, prom, college, and watching them get married. You didn't see that heartbeat for the first time and think, "Man, I hope my kid grows up to wash someone else's car for a living." 

I am not putting down anyone's occupation or way of living and providing for their family or themselves. I am just trying to make my feelings relatable to you. 

You might be thinking I am overreacting or being dramatic, and if you think that, that's because you don't have a child with special needs. You don't sit in the same space as I do day after day. Please do me a favour and stop analysing my thought process. Just "listen". 

Don't offer me advice. Sure as heck don't tell me "it's all going to be ok", because you don't know that. I don't know that. No one knows that. That's the point of the crystal ball and why I hate it. 

Just do me a favour and tell me "It's ok to not be ok." Allow me the space to feel sad, angry, worried, empty, lonely, terrified, frustrated... Allow me to not be ok over and over and over again. If I have learned anything from this experience, it's that grief can come back as many times and as often as it needs to. 

A Revelation

Woofta, that was not easy to write. Lots of tears were shed just putting those raw emotions down on paper as I tried to articulate my last two months. 

As He promised though, amidst the rain shines the rainbow in the grey sky, and yes, even in England, the sun does come back. 

Our family is Mormon. We baptise at the age of accountability which is 8-years old. It's the age we feel that children can understand the difference between right and wrong and can understand the commitment that they are making when choosing to be baptised into our church. 

This pending date had been hovering over me for a while. Would AJ be ready in time? Had I done enough; taught him enough to prepare him for his interview? Would he pass his interview? What if the questions confuse him? Will the Bishop know how to rephrase them?

There is a policy in our church that extends mercy to people with disabilities. Those that are unable to understand or comprehend right and wrong aren't held accountable, therefore, they are not required to be baptised. 

It wasn't until teaching AJ the doctrine of Christ that I was able to share with him the things that God asks us to do while in this probationary state. That's when it hit me. Nowhere in the Bible does it say that AJ must have a fancy job or a college degree in order to inherit the ultimate happiness that God extends to all of His children, a.k.a. eternal life with Him. He only asks that we "Come Follow Him", that we try our best to keep the commandments that He has given us, that we take upon ourselves the name of His son and think of Him often, and that we utilise the Atonement of Jesus Christ in our lives. 

When I had given AJ his last "lesson" during his therapy before his baptismal interview, I asked him if he understood. He looked me square in the eyes and said, "Mom, let's go to the church. AJ get baptised".  I was gobsmacked. AJ has been adamant that he was not getting baptised for over a year for his fear of having water enter his ears, nose, or eyes. For the longest time, we couldn't even say the word "baptism" without AJ wildly protesting with his hands, "No, not me. I not go deep." 

We didn't know it, but AJ had developed his own method for being immersed into the water preventing all water from entering his unwanted crevices. He had understood what was being asked of Him by the Lord and was determined to be baptised. 

God created a plan of happiness for all of His children, even AJ. Happiness in this life looks differently for everyone. AJ is different, very different, but the Saviour is perfect and He perfectly knows my son. He gave him this trial, and by golly, He also gave him the means to return to Him. 

I'm not saying my problems are gone and my anxiety is put to bed for good, but I am saying that my faith has restored my energy to keep going, to keep pursuing those math sums, those comprehension questions, and the never-ending spelling exams. 

This Earth life is messy, but it's supposed to be. We aren't supposed to be able to do it on our own. That's the whole point, and I have AJ to continually remind me of that fact. Our time here is short, but it's what we do with it that counts. 

Here is a stunning picture of my gorgeous boy on the day of his baptism:

Congratulations, AJ. We are so proud of you for all that you have accomplished, for your perseverance and your can-do attitude. You never give up, ever. You work harder than any person I've ever met and it has been my privilege to be your mom. 

My heart,

~K