Doesn’t all of this feel oddly familiar to you? So terrified of the future. Haven’t you felt that before? The fear of the unknown? Continual anxiety caused by the ultimate invisible boogey man we call… time. When will this change? How long will this last? When will this get better? Almost too familiar. So many questions but no one has concrete answers. Actually, let me rephrase. No one has answers that make sense to my non-expert brain. Information is flooding in fast but it is all so confusing and contradictory…
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Some days, it feels like we are climbing onto the exact same merry-go-round that we were on yesterday, and the day before that and the one before that. The same music, same speed, same smells, and my son would undoubtedly choose the same horse to ride every single time. We continue, round and round, stuck on a loop. Sounds peaceful, right? Until the song changes, an undesirable sound or image comes into the loop. Or the lights are too bright or too dim. Something familiar is missing, out of place…
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I absolutely loved my oldest daughter’s kindergarten teacher – I really felt like we were partners in helping my daughter. But, not a day went by that I didn’t get a note, an email, or in the worst case scenario, a phone call. I will never forget the day she told me she was worried my daughter would endanger her class. When Olivia was in pre-K, her teachers seemed to be setting the stage for an ADD diagnosis. But she was only three, and then only four, and…
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There are 24 hours in a day. Every hour is 60 minutes. But I am quite sure the hours between 1:00 and 6:00 AM are at LEAST 6000 minutes each. Lonely hours spent alone with my thoughts. I have been awake during these hours because I am feeding an infant. I have been up because I have insomnia and can’t sleep. I have been awake because I suffer from chronic pain or a cold and so I just can’t get comfortable. A sick and hospitalized child or other loved one…
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Times are hard right now. For everyone. And if you’re a parent of a child with a disability, being off school isn’t as “cute” and “pretty” as it may seem across social media. I’m not saying every minute of every day is hard, but it’s not all fun crafts and cookie baking either. As I sit and reflect after a very difficult day, I want to express my feelings and the reality so many families are facing right now. You see, cancelling school doesn’t just mean no school for a few…
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When your last born loses her first tooth, it is supposed to be a little sad because one realizes that their baby is growing up. And will soon spend long summer days riding bikes and playing neighborhood games. They are learning math facts and reading classic stories like, “If you give a Mouse A Cookie”. With her bouncy little smile she ran to me and grabbed my hand and brought it to her tiny bottom tooth on the left. It was so close to being free. She had been using…
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I have been married for twenty-one years. My husband Joe and I have five kids. Our second son has autism. He is fifteen. Now, I may not know much, but I do know children exert an extraordinary amount of pressure upon a marriage. They like teeny-tiny constriction workers, yielding jackhammers If you add one in who never sleeps, smears soap on the walls, and screams all day, well, that’s when things get really interesting. You is righteous. You are never home on time. You have to take care of the…
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They don’t see how much you are struggling just to enter a room full of people. They don’t see your mom cringing and scanning the room immediately for triggers or danger. They don’t see how bright the lights are or how loud the conversations can be to your beautiful brain. They don’t understand why you cover your ears, bite your shirt, or self injure because the anxiety is too much to handle and your meltdown is not a typical toddler meltdown and you don’t know how to self soothe. They…
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I can’t catch my breath. Not because I’m sick. But because I’m scared. I know that this is a difficult time for all of us. I’m especially scared though for my daughter Liz and for other kids with special needs. And for their families. Liz’s therapy center is now closed indefinitely. No ABA, no speech therapy, no occupational therapy. I am scared that she will regress and lose much of the progress that she has made without access to these therapies. She has worked too hard and come too far…
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Social distancing. For a lot of people this is a new concept. Being alone, nowhere to go, no play dates, no birthday parties, no big family gatherings…staying home alone seems to be make people very uneasy. It’s hard and people are reassuring each other that “it’s just temporary“ and that life will go back to “normal” soon enough. But for some of us, this has been a way of life for a long time. What if this is your new normal? I get it. I used to be the mom…
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