Isolation

One thing that I hear from moms whose kids have disabilities is how isolated we feel. For many reasons, being social and all the things that comes with it – phone calls from friends, play dates, nights out – becomes something of a luxury.

I’ll admit that over the past year, I’ve been pretty bad about socializing. I simply haven’t had the desire or the energy for small talk or hanging out. Now that things are starting to calm down though, the urgency of beginning treatments and of digesting every miniscule piece of information relating to Anthony’s condition is past, we’re beginning to emerge and take stock of the social landscape. And what I’ve found isn’t pretty.

One of the problems is a lack of time. Motherhood is a 24/7 occupation. It might be born out of love, but it is still a hard, physically and emotionally demanding job. So when you add in the special needs of a non-typically developing child, motherhood becomes all that much harder.

By the time my husband gets home in the evenings, I am done. I am ready to completely zone out and not think about anything. After the kids are in bed, I just don’t have the energy to do anything other than exchange a few words and a kiss with my husband and walk to the bed to crash. So your jewelry party? Or makeup or plastic container or cooking implement party or girls’ night out? As much as I might want to go, it’s just not happening. Unless you’re looking for someone who will fall asleep in her margarita, then I’m your gal.

It’s hard for friends to understand that. It’s hard for them to understand that I can’t leave Anthony unattended, not even for a five-minute phone call. It’s not safe, for him or his siblings, and while he doesn’t do things maliciously, he also doesn’t realize why it’s not okay and dangerous to do certain things. When I talk on the phone, I get distracted and that isn’t something that mixes well with keeping my kids safe.

Another issue is that, with the exception of a few close friends, I’m finding it very difficult to relate to other moms whose kids are Anthony’s age. It’s hard to be an active participant in a conversation when your child isn’t hitting the same milestones as other kids. Or maybe it’s the pitying looks that other moms give you when you share a triumph or what happened in a recent therapy session, especially when it marks your child as “different” or “slow.”

There’s also a lot of head shaking accompanied by the seemingly requisite phrase, “I don’t know how you do it all.” And though I’m sure those head shakers are trying to give a compliment, I always get the feeling that what they’re really saying is, “I’m so glad it’s not me.”

The answer, of course, is that I don’t see that I have a choice. I do it because I will do anything to give my child any advantage possible. I do it because the option of not doing it and allowing my child to drift and not have the most fulfilling life possible is simply not an option. I do it because it is what any mother who has her child’s best interests at heart would do. I do it because I love him.

I guess I feel like a fish out of water. I have more on my mind than what to serve for snack at next week’s play date and the latest celebrity gossip. While other moms are trying to decide whether to hit the park or the library, I’m hoping that I will be able to get Anthony to eat that day.

The logical solution is to find other moms to whom I can relate. Moms whose children are not typically developing. But the very idea is almost laughable – because they’re dealing with their own set of unique circumstances and probably have as little time to socialize as I do.

So what do we, as moms of special needs kids, do? Let’s hear your thoughts.

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The Hardest Days

The hardest days for me, as a mother to an autistic child, are the holidays, the special days. The days when my son should act like any other 3-year old and be excited, anticipating the fun and surprises that are in store.

Yesterday was Valentine’s Day. Matthew and Emily, at 1 1/2 and 4 months, respectively, didn’t understand that yesterday was a special day. And neither did Anthony, who at 3, probably should. And he definitely didn’t understand (or like) that he and his siblings were taken to a noisy, crowded store to pick out a card and a balloon for their daddy.

It was poor planning on my part, for sure. I certainly didn’t expect the store to be so crowded with last minute shoppers. Had I realized, I would have tried a different store, done my shopping earlier, something, anything to avoid the chaos that I knew was certain to push Anthony to the edge of his limits.

But remembering what his OT told me – that Anthony needs to learn to deal with situations where he is not in control, where he is not comfortable, I forged ahead into certain disaster with a cheerful attitude. And things did seem to be going well – at first.

Eventually, though, it became as Anthony says, “too” – too much noise, too many people, too crowded, too hot, too much excitement. And that’s when the meltdown occurred.

When people are staring at my precious son, muttering about bad behavior (yes, I heard what you said, you wonderfully put together woman with the perfect child) and why I’m sitting in the middle of the store, holding him and rocking him instead of disciplining, it is so easy to get frustrated. So easy to focus on the things he can’t do.

That’s always the way, isn’t it? To focus on the things we can’t do instead of the things we can? But as any mom to a child with any disability will tell you, there is nothing to be found down the road of the can’t’s. Nothing will sap your spirit more quickly than focusing on all the things your child can’t (or won’t) do and all the things your child does do that he shouldn’t.

It isn’t easy to change your thinking. It’s like buying your dream home only to discover that it has orange shag carpeting that can’t be removed or replaced. But you learn to live with the ugly carpet because you love that house so much, and the carpet is a part of that house. You would give your life, your soul for that house with its carpet.

So as I was sitting there, rocking and soothing, I focused instead on what a precious gift he is. My sweet boy who has just learned to say “mommy” and “thank you.” Who greets me with hugs and smiles. Who doesn’t care if I’m not perfect, because I’m his and he loves me.

I may be his mother. I may be his caregiver. But the truth is, he cares for me and makes me complete in a way that I never was and could never be without him. And that is something more precious than any developmental chart and its measurements.

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One Year

It has been one year since we received Anthony’s diagnosis. What began as a very simple request for a speech evaluation to diagnose a possible speech delay just before his 2nd birthday, turned into a roller coaster ride of evaluations, acronyms (PPD-NOS, SPD, ASD, anyone?) and sometimes overwhelming emotions.

I feel like I have coasted through this year on auto-pilot. That I’ve been in a boat which has been drifting in a foggy sea. I honestly don’t think that I would have kept my somewhat dubious sanity otherwise. When you’re told that your toddler has autism and you find out you are pregnant with your third child in the same week, there’s not much else to do.

Don’t misunderstand – I have been very aggressive about Anthony’s care. Starting therapy, finding new wonderful therapists when our first attempt didn’t pan out, getting services begun through our state’s Early Intervention program…but in the rest of my life, I have been content to coast, to avoid stress and most of all, still manage to live in a little bubble of denial.

If you want the absolute truth, I still am a little unsure what this monster is and what it means for us in the future. I haven’t done much research, because research will make it real. (Not the healthiest of coping strategies, is it?) I am slowly coming to terms with the fact that this isn’t something that will ever be going away. And it scares the shit out of me.

If, God forbid, the therapies don’t work, if he never gains the emotional and developmental levels he will need to function independently in society, who will care for him when I am gone? His brother? His sister? To place that upon them, simply because of the circumstances of their birth, seems wholly unfair.

And what if they are unable or unwilling to accept the care of their older brother? Will he spend his days in an institution? What kind of life will he be forced to live when I am gone? These are the thoughts that haunt me. That wake me in the dead of the night, sweaty and with tears streaking down my face.

But, after a year in our drifting little boat, the fog is starting to clear. Here and there, we are beginning to see thin watery patches of sunlight fighting to break through the clouds. It is going to take time but we are only at the beginning of our journey. We have the rest of our lives.

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Miracles Happen Daily

In our home, miracles happen everyday. Not big, earth-shattering things, like the parting of the Red Sea, but smaller things. Things that would be completely routine and normal for a family whose everyday conversations weren’t filled with words like therapy or autism.

Things like my just-turned 3 year old son finally called me “mommy.” Not mawmaw, not mimi, not memaw, MOMMY. And the sweet tears that spring to my eyes everytime I hear it. Good Lord, if I live to be one hundred, I don’t think I will ever hear a more beautiful sound than that word springing from his lips.

But where there are miracles, there are also struggles. This is our journey through both.

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