I don’t think many people really understand the cycles of grief that come with raising a special needs child unless they themselves have lived it. It is a strange thing. It comes and goes in spurts and often rears its head in very unexpected moments. These past couple weeks it has hit me hard again. Our family is extremely blessed to have Matt-man in it, and I wouldn’t trade him for the world. He is a source of much joy and laughter in our home, but right now I just need a place to vent a little about some of the struggles we are going through.
I hate what autism and 15q24 have taken from Matt. He has to work so much harder than any of his peers or siblings to learn the simplest tasks of life, and there are some things that he may never master. I don’t want to sound like I’ve given up or lost hope, because I haven’t, but the reality of how severely delayed Matt-man really is has finally started to sink in. Yes, he is continually making small steps in his development, but the disparity between him and other kids his age continues to get greater and greater as he grows older. This is really difficult to swallow.
My 7 year old, Nathan, and 2 year old, Audrey, play and talk together all day. They sometimes try to involve Matt, but he just doesn’t understand how to participate without a lot of prompting and assistance from me or Danny. The way his siblings play just doesn’t seem to make sense to him. They engage in quite a bit of play that requires a very active imagination. For example, tonight they were making a special stew for worms using grass, sticks, leaves, acorns, garden herbs, etc. I don’t think Matt had a clue what they were doing. He was happy to roll a truck back and forth for an hour. That is the kind of play that makes sense to him. There are other times where I think he would participate if he could, but his fine motor skills prevent him from doing so. Nathan and Audrey spend a lot of time building legos. Trying to manipulate legos is very difficult and frustrating for Matt-man. He would prefer to be off by himself doing something that makes sense to him – like rolling cars back and forth or hanging upside down off of the couch.
He can carry on very basic conversations about his immediate needs and wants, but there is very little meaningful conversation beyond that. He couldn’t tell you his favorite color or favorite food. He has a difficult time answering the question “what did you do today?” because he still doesn’t understand the abstract concept of time. Words like today, tomorrow, yesterday, this week, next week, etc., are just that…. words. They don’t seem to hold any real meaning to him. He is smart enough to know that a question was asked so he responds with one of his memorized sentences, which may or may not make sense in the current context.
One of the biggest things we are struggling with right now is that he has started having crying spells. Now by crying spells I don’t mean a little tantrum; I mean he cries hard for at least an hour until he is physically worn out and cannot be comforted. Throughout the crying spell he will periodically start laughing his head off for no apparent reason and then go back to crying. All we can guess is that some point in the tantrum he must decide that the sound or sensation of crying is funny in some way. Sometimes there is an obvious trigger to the crying spell, but many times he starts crying for apparently no reason and we can’t figure out for the life of us why.
The other big struggle we are having with Matt-man is the constant fear of elopement. When he is not at school, we have to watch him pretty much every second of the day for fear that he will take off on his own. I do not think this is an intentional desire to “run away” per se. I think it is a matter of wanting to explore the world and being completely oblivious to the things around him as he does. He has learned how to unlock our front door handle and deadbolt, but that door is pretty loud so we have learned to very quickly check the door if we hear it open. The back door opens into a fenced in yard with a padlock on the gate, so I am less worried about him sneaking out the back. Honestly, it is much more difficult when we are at a friend or family member’s home. Instead of just relaxing with friends/family, we spend the entire time stressing out about our child getting away unnoticed. Church dinners are just awful for this same reason. They are usually held in the gymnasium, which has multiple emergency exits. If I take my eyes off of him for a minute, he often has disappeared. He has gotten out of the building unnoticed more than once, which is very scary considering the church is on the corner of 2 fairly busy streets. I worry less about my 2 year old because she has a healthy fear of the unknown and always returns to mom or dad or cries for assistance.
Matt-man is only 5, so I honestly have no idea what life still has in store for us. He could make some unimaginable gains with continued therapy and blow all of us away. I really hope this is the case, but I am preparing myself for the very real possibility that Matt-man will always need to be in the care of his family. Nathan recognized this a long time ago and has said for a while now that his brother will live with him when they are grownups.
Please keep us in your continued prayers. We really do covet them. We are doing the best we can with God’s help, to raise all of our children right, but this is done with a lot of stress, exhaustion, and the guilt that we aren’t doing enough. I am thankful for the little bits of encouragement that come along just when we need them. Just this week my oldest son, Nathan, prayed and thanked God that we have such a happy life. We must be doing something right.
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