Yesterday while Angel was in therapy, I visited with another grandma who was there with her granddaughter. She also has a grown daughter who is on the spectrum. While we were talking I said that one of the hardest things is when people say, “she looks so normal”. The other lady started tearing up and as we shared with each other she told me that that was one of the hardest things for her too.
Many people may not understand how this can be difficult to hear. Let me just share for a moment, my feelings on this. We knew that Angel had been affected by meth. But the autism diagnosis was a surprise. Angel looks “normal”. You can’t tell that her mind is affected, that her nervous system is altered, that her learning is delayed, that her speech is impaired and delayed-NOT by just looking at her.
And the problem is that in seeing this little Child of God as “normal”, it is hard then for you to see the constant struggles and challenges that we endure each and every minute of the day. It is why we are still tired after a ‘good night’s sleep’. It is why we cannot do the things we used to do. It is why our priorities have changed. It is why sometimes we don’t seem to be focused on things around us. It is why we seem pre-occupied. You see, we don’t mean to pull away from those around us. We don’t mean to make anyone feel ignored or unwanted. We still care about all of those people and things that we always have. But many people assume because she looks ‘normal’ that there is something else that is making us turn ‘inside ourselves’ and live this life of continuous challenges.
We had no idea when we brought Angel home with us almost 4 years ago, that we would be where we are right now. It was not our plan. I had no plans of raising another child at my age. We were content to be parents and grandparents. Enjoying our time with each and everyone. God, however, had a bigger and better plan! Now I know some of you don’t believe that. And there is nothing I can do to change your minds. But when you KNOW, I mean really know, that God is taking you down a road, well, you FOLLOW.
This has probably been the hardest thing we have ever done. We get up each day knowing just how important ritual and routine is. We have to take certain roads to go to school, to the store, to the doctors. Routine! That isn’t something that we were used to before. We were more spontaneous because of our time in life. It isn’t easy. There are times that I would just love to get in the car and go somewhere-just BECAUSE! But we don’t get to do that. And that is one thing that people don’t understand.
There has been a cost for what we are doing. I’m not speaking just about finances; although that has been true. I’m talking about the cost of not being able to share in family activities and just being together. That is one that has really cut through my heart; because we have hurt those that we love, unintentionally, but hurt just the same. If my heart could bleed, this would be the one thing that would empty my heart of it’s very life. That has been the hardest thing for me and for Jim. There has been the cost of isolation and feeling that no one truly understands how you feel and what you need. That is another hard one.
Please don’t get me wrong, I’m NOT complaining. God’s plan for us was bigger and better than what we anticipated. There is NO way that we could do anything but what we are doing. Adopting Angel is where we have been led. She doesn’t replace anyone, she isn’t any more important than anyone else. But she is NOT ‘normal’ or neurotypical. She has many special needs. AND if God had not placed us where we were, we have been told that she would be institutionalized. Now we know WHY she is with us.
God has blessed us with an unbelievable family! He has blessed with an unbelievable family at our Church! He has blessed us with unbelievable friends! It is a difficult road we are on; but life is like that. We are just glad that we listened to our hearts and to the Lord.
I pray that this will explain some things to people who just “don’t get it”. It is challenging but it is also very rewarding to know that you are doing just exactly what you are meant to do.