Tag: special needs

The Change.

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I think it would be interesting to be a doctor that diagnoses autism. A family comes to you in a very vulnerable place. You give them the dreaded diagnosis and they go home and learn how to deal with it. The next check-up, the parents that you met last time are just a little stronger. Then the next time, and the next time. You see these changes happen. Until 1-2 years later, and they are no longer the person that they were at the initial appointment. It is a metamorphosis process of sorts that you are forced into as parents of children with special needs. No one asks for this life, but you take it and you adjust, and you become the person you need to be. Out of necessity. It would be hard to give the person the diagnosis, and know that you are drastically changing this person’s life. Obviously, the doctor is not actually the one changing their life, but it is the onset of their new reality. The actual diagnosis.

I would never want to go back and live that 6 months following diagnosis again. It was a dark, confusing, hard time. When I see parents about to get the diagnosis/ ones who just did, my heart goes out to them. I hurt for them knowing what is to come. I give advice, but nothing I can do can change what they are going through. You just have to step aside and watch them change into the person that they need to be. As they learn to do autism their way. Don’t get me wrong, I love the community in the autism world, and I don’t know what I would have done without people’s help along the way. Those who answered my questions about therapy, behaviors, self-care. But nothing can take away that stage that you must go through to be the Autism Parent you need to be.

I distinctly remember a meltdown that E was having one night. He was out of control. Literally. I don’t think he had actual control over what he was doing anymore. Nothing would get him to calm down. I was holding him in his room in the dark trying to get him to go back to sleep. He was flailing and trying to move everywhere. I was holding him as best as I could to keep him safe from himself. I could not comfort him. I just sat. I held it together at first, but then he wriggled a bit from the position I was holding him in and head butted me in the lip. Hard. My lip was split, swollen, and bleeding. That instant of sheer pain destroyed the barrier that was keeping me together. I sat there crying, holding my son, pleading with a higher power to help me know what to do. I thought in that moment, I cannot do this. I am not strong enough to handle this situation. I wondered why I was given a child like this. I felt claustrophobic, wondering if there was a light at the end of the tunnel. My husband came up to check on the situation. He took E from me and had a turn trying to calm him down. I went into my room and cried and cried and cried. I felt like a failure, unable to calm my own child. I thought it impossible that I could stretch any further without breaking. But I did. The wounds heal into a sort of armor, and you get up and you do it again and again and again. You get used to people staring in public when your child melts down. You get to used to the comments of others, strangers and sometimes those close to you even, about your parenting. You get used to having to dodge your child’s aggressive behaviors as if you are in a boxing match. You get used to functioning on 3 hours of sleep in a 24-hour period. You get used to filling out paper work and going to countless appointments. Strong people are not born strong. They are made.

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Hoping For What?

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As humans, I think we are designed to look for the light at the end of the tunnel. We gear up all the energy that we have, get a running start, and do everything we can to get to that light. But what happens when that light is not as visible? What happens when there doesn’t seem to be an end in sight?

I’ve been having meeting after meeting lately while we prepare to transition E out of Early Intervention and into the next phase of services. Part of this is a Future Planning Meeting, where we talk about what my hopes and goals are for E. I remember the meeting last year. I was optimistic. I had heard so many success stories about kids who after a year of therapy, their progress really took off. The speech kicked into place and things just got easier. When E’s third birthday rolled around, I remembered that meeting and I felt a loss all over again. A loss for all the hopes that I had for him in the past year. My original hopes were adjusted when he was diagnosed, and I had acquired new hopes. E actually has progressed. He has made a lot of changes. But as any parent of a special needs child knows, with progress, comes new difficulties. E becomes more aware of his environment. E becomes more anxious and sensitive to those things around him. E becomes more fearful. E becomes destructive as he learns to explore his environment.

As he has learned to say certain words and babble I find myself so excited for him. So excited that he is learning how to form sounds, and say words that are functional. E hears a door open somewhere in the world; on the tv, upstairs, in the neighbors house (That E Boy has supersonic hearing when he wants to). He says “door opennnn”…. I get so excited that he is aware enough to notice that the door is open and to say that phrase. I start to think, “Wow he is going to talk. I am so happy for him! Things are going to get easier.” But then that excitement fades as it stays the same. The same standstill. Last June, he imitated his first word, I was elated. A year later he does not imitate that word anymore. He does not imitate more words. He imitates a different word. I am ready for the progress, but it seems to just be parallel progress.

Preparing for my next Future Planning Meeting, I thought, “What are my hopes”? The meeting came around, and they asked the questions. “What is E doing differently this year? What has he overcome? What are his strengths”, and lastly, “What are your hopes for him?” Adjusting what I want, I told them I don’t have specific goals. My hope? For him to be happy.

Having a child with autism, it often seems suffocating. I get to a breaking point where it seems I can not stretch anymore, but then against all odds, I do.

Today, I heard a crash from the basement. I went down to find E shattering an heirloom. Picking it up again and again. Smashing it into thousands of pieces. The one thing I had that had been passed onto me from that grandparent. My heart broke. I was devastated. I can tolerate him pouring fruit loops all over the floor. I can tolerate him ripping a key off of my keyboard. I can fix those things. What I can’t handle? Him destroying something so irreplaceable and special to me.

Hope can be dangerous when you are dealing with autism. Every child is so different and I have no idea what to hope for. I hope that I can handle the next year. I hope that I can be a good parent. I don’t hope for things to get easier, and I don’t hope for progress. I want it. But if I hope for it, I don’t think I can handle the pain from that being crushed. Again and again.