Childhood Apraxia of Speech: Living in Silence

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JamesPhoto: Jessika Savage

If you had asked me what I envisioned motherhood would be like when I was pregnant with James, I, like every parent in the world, definitely would have described a very different world than the one I live in today. I probably would have told you James would be an only child, but SURPRISE when I was exclusively breastfeeding my baby who was a product of fertility treatments, I got pregnant!  I probably would have described how my home was going to be full of books and questions. I would have told you about how I would patiently explain the answers to the world of questions my perfectly clean, and articulate two year old had to ask.

Fast forward two years later, and my world with my little boy – well… it’s silent.

For me, the most outspoken, overly analyzing, over explained girl I’ve ever met – the silence it’s deafening. In my world, my child was born without the ability to speak. My son has something called Childhood Apraxia of Speech and his case is considered severe. In the best description I can give you, my son has a hard time with motor planning – meaning he understands everything, he even knows exactly what the words he would like to say sound like, but somewhere in that little brain of his there’s a misfire and he can’t make the muscles in his mouth make the sounds. He is literally trapped in his own little brain, desperate to tell me what he wants, thinks, knows, and feels, but totally and completely incapable of even calling out my name. This leaves my little guy miming, and pointing and grunting.  It leaves him frustrated sometimes to the point of crying, and sometimes to the point where he just gives up trying to tell me what he wants me to know. It makes my heart break a little more every time I watch him give up trying to show me what he wants or needs or has to say.

The outlook is pretty unsure. I’ve brought James to numerous pediatric neurologists, developmental pediatricians, speech language pathologists, and a variety of other professionals. They all tell me his cognitive testing is way above average and they all tell me he is not autistic (this was my original fear, and apraxia is very often misdiagnosed as ASD). But the questions no one has answers to are the daunting ones…Will he talk? When? Will we be able to understand him? Should we teach him to sign? (We do sign) Should we use an iPad communication program? How will I actually know if he knows how to read? How do you potty train a nonverbal child? Can he go to a regular public school? Do we need a special ed school, or will Montessori work? Will he be able to make friends?  How much therapy does he need? Will insurance cover it? Can we afford it? What causes this? Could my other baby have this too?  They also can’t answer the big questions about my child I wish I knew the answers to…What kind of ice cream does he prefer? Does he want milk or water? What’s his favorite color? Does he feel okay? Is he scared? Why is he crying?

I hate to make this sound like it’s about me, because my world is all about James, so much so that I have to remind myself to make sure my younger baby goes to a music class or to a play group of her own because she is so often just dragged around to the millions of appointments I bring James to. Sadly, I know someday she will be one grade behind him, his baby sister, but she will likely have to speak for him, because he will not be able to tell someone what he wants or needs, or he will make a sign or a sound that maybe we know in our little home and family, but no one on the outside would have any idea what on Earth James is trying to say. And with those thoughts, I cry for both my kids, because they have each other, but also because James will have to find his own way or make one in this world, because it is a long and scary road ahead.

With all of this though, we have a happy home and family. I have also found myself to be more of a fighter than I ever really thought I could be. I admit that on most nights my husband rolls over to find me deep in research, looking for a new doctor, a new treatment, the right school, the best options, on those nights he finds me feverishly typing away, making a plan and figuring out how I can make that plan happen for my kids. After the really bad days my husband rolls over to find me not tucked in our bed but sobbing and hopeless in the dark on the bathroom floor, deeply wanting to keep the sobs and hopelessness as far removed from my kids and family as I can.  On those nights I feel like I understand James the most, that I truly get how sad and scary and lonely it is to be screaming out for help to have no one know what you are saying. On the mornings after those nights I pick myself up, I wash my face and I pick up my kids and I hug them as tight as I possibly can, I take their little faces and kiss them all over until they are giggling uncontrollably and pushing me away. I remind myself that I am hopeful, I’m a fighter – I will find a way.

There are a few things that give me hope. I am blessed with more amazing friends than any mom could really ask for, friends who love and support my family, and friends who know when and how to make me laugh, and when I need a stiff drink!  My husband is one of the most likable people on the planet (me, not so much!), and somehow James inherited that trait from his daddy. James has a goofy little grin, he loves babies, and he shares well. I can’t take credit for any of these things, as I still don’t share well. I was blessed with a neighbor two doors down from me who is my real friend, the kind of girl who really appreciates a sarcastic comment, and who is always a good drinking buddy. She also has a little boy who is six months older than James, and her little boy, Max, gives me true faith in human beings and the kindness of children. Max is quite possibly the exact opposite of James in many ways. He is the most verbal two year old boy I’ve ever met! He speaks in complete and totally understandable sentences, and he talks nonstop.  And maybe because of this, Max and James are best friends. Max is constantly asking to show James things, to play with James, to come to our house, for us to come to their house. Max plays nicely with James, they share their toys, they show each other things. Somehow in these interactions Max is the narrator, explaining every step and detail to James and the world, and James is laughing and understanding and not saying a word.  I hope Max will always be that friend to James, I hope they grow up to be lifelong friends. I am thankful every day for the kindness of that two year old down the road, he makes my little boy’s life better and we love him.

I also will say I’m lucky enough to be pretty good at a lot of mommy stuff. I can breastfeed like a champ. I cook all the meals in our house and I love doing it.  My friends never want their husbands to hear the huge menus I plan and execute upon my husband’s request or because something good was on sale.  I can trek two kids anywhere, and it never seems hard. I can handle a fussy baby, and live on very little sleep.  I love children. I love children’s books, and have taught hundreds of kids to read. Finger paint, and play dough and colored pasta – I make all that stuff.  I know a lot about schools and was a teacher in my younger days.  In college I tutored poor kids, and usually ended up with the downtrodden kid on my lap teaching him letters and sounds.  I spent my teenage years babysitting for every child in town, including a family with 5 children under the age of 6, I adored them all. I remember my dad saying to me just before James was born that he knew I was born to be a mom.  I believed that too, I never had a day in my life when I didn’t want to be a mom, and not just any mom, but the best mom.

Now that I am a mom, and not just any mom but James’ mom (Anna’s too), I know that everything I ever did in my whole life was preparing me to be James’ mom. Come hell, high water, or kindergarten, I will find the best way to fix this for my child.

Related post: What’s Normal?

I See You Over There

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boy-running-alone Image via Shutterstock

I see you there, shaking your head in silent judgment as my son argues with me in public.

I see you there, making a face and rolling your eyes when my son doesn’t behave the way society expects him to behave in public places.

I see you there, telling your son not to play with, or talk to, my son because you think he’s a bad kid, a disrespectful kid, a problem kid.

My son doesn’t notice you. He’s too busy to be concerned by what other people think of him, but I notice you. I see the judgment on your face.

Do you think that I can’t see you? Do you think that somehow I love my child less than you love yours because God made him special? Do you think that somehow you and your child are better than me and my child because you don’t have the same issues that we do?

Do you know how hard it is for me to remain silent when I see you judging my child? Do you know how badly I want to call you out in front of everyone here and say “I see you! I see you judging us!”, but unlike my son, I am hesitant to make a scene. More importantly, he hasn’t noticed you yet and I’d prefer he never does. I’d prefer he never realize that some people judge him and find him lacking in some way. He is perfectly happy with who he is, he’s perfectly content in his own skin, he doesn’t think he has any issues at all. I’d prefer to keep it that way for as long as possible.

Every person on this planet has some kind of issue. Perfection is an illusion. It just may be that your flaw is judging other people.

There are a lot of things about my child that you don’t see. You don’t know that he loves me with his whole heart, without reservation and without hesitation. You don’t see that he is fiercely protective of the people he loves and he would be deeply upset to know that you had upset me with your actions. You don’t see that he is an amazing student, and gets fantastic grades at school.  You don’t see that sometimes he frustrates me beyond belief, but he is my child and I love him just as fiercely as he loves me.  You don’t see that he is funny. That his unique perspective, and view of life, combined with the fact that he has no hesitation to point out anything he notices often makes me laugh until I have tears rolling down my face.  You don’t see that he feels things deeper than most people, that includes both joy and hurt.

No, you don’t see any of that because you don’t care. All you care about is that he is talking a little too loudly for your taste. That he is distracted by a piece of fuzz on his shirt when he should be listening. That he is emotional at times, and gets upset easily.

Because of these things you’ve decided he’s a bad kid, that he’s unintelligent, and that he’s not worthy of your time or attention.

Guess what? You are not worthy of mine, either.

He is honest, he is authentic, and he doesn’t judge other people. He has empathy, he has compassion, and he cares about others. He is always working to be the best that he can be, and he doesn’t waste his time looking down at other people. He’s enjoying his life and he is enjoying everything that crosses his path.

Don’t you wish you could say the same?

Related post: Looking for a Land of Empathy and Wonder 

I Thought We Had More Time

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I sad because my legs no work so good.  I no run fast like Parker. My legs no work.

It’s the heavy silence that follows the bomb dropping, where all you can hear is the sound of your own heartbeat pounding out its instantly accelerated rhythm in your ears, followed by the air slowly leaving your body – the breath you’ve been holding since he said it.

Someone should say something.  Someone should tell him it’s okay, that he’s perfect, that we knew things would be tough and that they likely always will be but that we will get by. Together.

Isn’t someone going to say something?  Because I am doing all that I can just to hold back from letting out this sob that is building up in the back of my throat in the seconds since those words came out of his beautiful rosebud mouth just dripping with sadness.

But it is only me in the car with him.  And Parker.  And I am supposed to be the one to soothe him, to tell him…what on Earth am I supposed to tell him?  That it will be fine? That it sucks? That I’m sorry?

I thought we had more time.

I thought that we would’t be here yet, that at four years old, this boy – my beautiful boy that finally definitively learned last week that he is a boy, that can remember that my name is “Jamie” but still can’t consistently recall his father’s name, that thinks that the thing he poops out of is called his “tushie” and the thing he pees out of is also called his “tushie” – well, I thought we had more time.

I thought he had more time.

More time to walk through this world oblivious to having Cerebral Palsy, more time before he was aware of the cruelty that the cocktail of fate or genetics or bad luck or me not taking my prenatal vitamins regularly enough served up to him.

That was another of our “silver linings” – of the platitudes we told ourselves about his cognitive deficits, about how, At least he doesn’t realize it.  At least he’s not aware of all of this – that he’s different – that most kids don’t have to work so hard just to get through each day and that it is not normal to have eight hours of therapy every week.  At least he doesn’t realize that he’s different, we told ourselves and each other. Thank God for that.

But he knows now.  Something that revealed itself on our drive to school this morning when Parker told me that Owen doesn’t look so good.  I peered at him through the rearview mirror half-expecting him to be some horrendous shade of green, but his coloring was fine.  I assumed it was likely because he was still upset that Scott told him he couldn’t wear his Oscar the Grouch watch to school today.  Seeing this as an opportunity for good communication between them and a chance to have Owen talk about his feelings, I suggested to Parker that she ask him what was wrong.

Owey, What’s wrong? She asked sweetly.

I sad. He replied.

Why are you sad? She pursued.

I sad because my legs no work so good. I no run fast like Parker. My legs no work.  He responded.

I think I gasped. Quietly, but it happened.

And then Parker saved me.  This five year old who knows – my God does she know more than she ever should have to, than any of us should – she saved me. She just jumped right in and she gave him the best pep talk I’ve ever heard.

“No Owey, you’re going to be really fast one day.  You can grow into my sneakers soon and I’ll give them to you – even though they’re pink – because they light up and that makes people really fast.  And you should ask Daddy to help you with your running skills.  Daddy’s really good at stuff like that.  I bet you’ll even beat me one day!”  She told him.

Telling her little brother that one day he would beat her in a race was the very height of generosity for my girl.  For this little thing that has problems of her own – arthritis and sensory issues plaguing both her strength and her self confidence – her speed is the one physical trait she treasures and takes pride in.

And she gave it to him.  With absolutely no hesitation, no reservations.  She gave him that.

I thought she had more time.

Before she needed to start giving him pep talks and worrying about standing up for him and explaining things to him and for him.  She’s only five.  She’s not even in Kindergarten and somehow she just knew that he needed this.

And then we pulled up to his school, and I dropped him off, letting his therapist know that he was feeling a little sad today.  He kissed me goodbye and looked at me with those clear blue-green eyes of his, the ones that always make people comment simply Those eyes!, and they were cast down a bit – no smile crinkles at the corners, no usual sparkle.  Something in him had made the connection and he was feeling it.

It’s when you know that thing that you can’t un-know.

It’s when you see that look in your child’s eyes that you can’t un-see, or you hear that profound sadness in his voice that you can’t un-hear.

It’s unbearable.  I ache for him – for his little heart that knows now.

And I dropped Parker off a few minutes later at her school, having turned to her at the first red light to tell her how incredibly proud I was of her.  How she showed such generosity, and grace, and love towards her brother in those moments.

And then I called Scott as I pulled out of the driveway of her school, and told him what had just happened and finally set free all of those tears that had been impatiently waiting to be shed.  And I wondered aloud what we were going to do, what we were going to tell our boy, how we were going to explain all of this to him.

I have cried on and off all morning – thinking about that conversation this morning and the conversations that are inevitably going to follow it.

And I still have absolutely no idea what to tell him.  There are things that a hug and a kiss can’t fix.  That I don’t know is the only response to, and yet still grossly insufficient.  There are I’m sorrys that I want to utter quietly to him, that I want to scream and cry in frustration for him – wanting him to know that I’m sorry this happened to him, that he didn’t deserve it, that I wish it had happened to me instead – all the while making clear to him all the reasons I’m not sorry – not for a single second that he is mine, that I wouldn’t want anyone but him to call my son, that there have been four long years now that he has made me proud each day without ever knowing why.

But he knows now.

I thought we had more time.

5 Things to Keep in Mind While Raising a Wild Child

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The crib used to contain them, provide some sort of barrier between them and the ground. And then one day, they get brave enough to climb over the “great wall,” open the door, and look at you in a whole new way. It’s the beginning of their belief that limits CAN in fact be stretched, altered, and broken. The world becomes exciting in a whole new way.

My son has not stopped moving since he penetrated the wall. I have been told, “Oh, it’s a boy thing,” but I have seen many a little girl with the same crazed look in her eyes. The madness that only comes from being born a Wild Child. Over the years, we have tried to adapt to some of his ways because it has become very clear he is way too resistant to many of the ways of the less wild. He is house trained, but that’s where it ends. When he gets out in the world, he is an explorer wanting to find out everything there is to know about everything by running, jumping, or clawing his way towards his discovery. He is complex and emotional and on a mission to completely exhaust his parents, bringing them just to the brink of insanity before gently easing them off the ledge with a sweet kiss and perfectly timed fart in the face.

He is the love of my life, and I truly wouldn’t change my son for anything, but come on, some days are just relentless. Here are some things to keep in mind if you find yourself in the same place:

1.  Surround yourself with compassionate people.  Let’s face a fact that is hard, but true. Some people suck. I’m sorry, but some of them just do. A few weeks ago, I took my 4-year-old son to the bouncy place. With all that energy, it’s the perfect outlet for him. I have been in some uncomfortable situations with my son. I am constantly apologizing for his behavior, even when I sometimes shouldn’t. But there I am, apologizing my way through play dates and get-togethers. But on this particular day, there were two other moms in one of the bouncers with much younger kids. My son was bouncing up and down with a perm-a-smile on his face. I apologized because I could tell they were clearly annoyed. Ignoring me, they actually got out and gave my 4-year-old the stink eye. Never before had I spoken up, but I couldn’t help myself. He actually had done nothing wrong, and it hurt. I said something about how horrible it was that they allowed children to bounce in the place. One of the moms just rolled her eyes and moved on. People suck. Aren’t all mothers on the same journey? Shouldn’t we be united or something? I don’t get it. Why is it so difficult to give a nod or smile? And the looks when my son is actually having a difficult time controlling himself, they can sting. I don’t have time for it anymore. Surrounding yourself with people who get you makes all the difference. My days are much more enlightening the more I fill them with empathetic ears and a heart big enough to care about all kinds of children, not just the “easy” ones.

2.  Erase jealousy and embrace gratitude.  I will admit that, on more than one occasion, I have walked by a story time session at the mall and become taken over by envy seeing all the children lined up, sitting on the carpet, listening to words being read to them. My son does not sit well. He never has. I used to check his butt for some kind of hideous rash that perhaps hurt really badly when he sat on it. Nope. It’s just not something he is programmed for. Maybe his species has adapted over time and the only way for survival is constant motion. I feel it when I go to his classroom early for a holiday party, and I feel it at a restaurant. The green-eyed monster emerges. I secretly wished my son were like that— following all the rules easily and sitting like all the other kids. But that’s not my reality. So how do I make the jealousy go away?

I embrace gratitude. I have a healthy, energetic, 4-year-old boy, and I am grateful. I check on him several times at night before I go to bed. It’s my opportunity to stare at what I created and to just take a few minutes to breathe and reflect and just feel gratitude that this boy is mine for a short time. I try to remember that one day that untamed energy will be harnessed into something more controlled, into a passion for what he loves. And my energy will be spent cheering him on.

3.  When in doubt, fire a heat-seeking missile.  Or a torpedo. Take your pick. My son can be more than just difficult sometimes. Some days begin with him climbing into our bed and kicking me in the face as he carelessly steps over me. And then the fun begins. He’ll cry all the way to school because we forgot his special blanket, and then he’ll cry the entire way home after I pick him up because I brought him the blanket, which he says “lives” at home and therefore does not belong in the car. Sometimes it seems like a reality show. Perhaps Survivor. We spend the day manipulating each other to get the desired outcome we each want. Pretty much every time we go to leave anywhere, I have to tell him goodbye – as if I’m leaving without him – just to get him to come with me. Then he runs toward me all upset because his horrible mother is leaving him. When he wants something, he asks me while shaking his head yes. I must say, his method is very powerful. Then when he hears “no,” the anger takes hold. The back and forth can be exhausting. I get so irritated when things that should be very easy suddenly become very difficult. What I have to remember though is my little man’s weakness. The kid can’t resist a full-on tickle attack by heat seeking missile fingers. When the missiles have been launched, that smile I love quickly fills his face. He is putty in my hands and finally ready to put his shoes on, or get in the car. Making him laugh when he is frustrated or angry has helped us both. It’s not a guarantee, but it’s a start.

4.  A good ugly cry can actually be quite beautiful. I used to think that after a bad day, a cry meant some sort of failure, like it was the final screw up because I couldn’t hold it together. Maybe it’s because, when I was young, I used to cry all the time, and for whatever reason, I would then add on a secondary session of crying because I was so upset about the first cry. Now,  I look at a good cry like a shower of sorts. I feel a little more refreshed afterwards and ready to move on and deal with whatever I need to. A good, devastatingly ugly cry is sometimes just the thing to make for a beautiful rest of the day. Don’t get me wrong, life is good. In fact, in the past I have cried because I felt terrible about myself that I was upset enough to cry when my life isn’t really that bad. I used to think, “There are people living on the streets. Why do I have the right to complain?” Well, unfortunately, I am human and flawed by design, so I do have to cry sometimes because I do get overwhelmed. For example, the other day my son spent a majority of the day in time-out for hitting. I began to realize that the vibe in the house was way off – too negative. It was a long day. He was really pushing me, and as much as I told myself to stay calm and ignore the behaviors, it got to me. The real problem is that the world still revolves and a multitude of things happen in our lives at the same time. My son is not listening, a family member is sick, there are bills to be paid, friends to help, dinner to make, and the list goes on. And these are everyday problems, and they can be handled, maybe sometimes just after a good, hearty cry.

5. Prepare for that which you can not prepare for. George Washington said, “To be prepared for war is one of the most effective means of preserving peace.” I think this stands true when raising wild children as well. I will never forget being at a restaurant with my son when he was younger. As usual, he would not sit still and was becoming louder and louder. A woman sitting at a table next to us handed my son a book. She was prepared. It seems so simple, yet a giant light bulb went off. The normal toys I brought with me were just that. They were typical, boring. So now I travel with enough ammunition to completely blindside the enemy. Whether it is a coloring book or a homemade laminated placemat with a dry-erase marker, I am ready with a bag full of distractions. I never realized the impact of distraction until I got creative. I have had people tell me a child needs to learn how to just sit at a restaurant without any distractions so they can get used to it and learn. Ha! I have been tempted to have them take my son out to eat. They would probably end up letting him dump out all the salt and pepper shakers and use the mustard and ketchup to make a Pollock painting on the table just to keep him busy and their sanity in tact. I don’t want to keep my son out of situations because it’s easier. I want to keep throwing him in the water until he learns how to swim. Sometimes you just have to start by using floaties.

Related post: What You Don’t Know About that Unruly Child

A Letter to the New Autism Parent

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mom-hugging-little-boy

Welcome to Club Spectrum!

You didn’t want to be here, but don’t feel bad about that — nobody signs up for this gig. But think of it this way: At least you now know what the hell is going on now. And here are some tips to help you navigate the way:

1. Pace yourself. You are about to start a never ending marathon. Know when to take a break. Embrace the couch and some bad TV. Or if you are one of those gym goers, do that. Avid reader? Go fire up that kindle or go old school and buy a few books. You’re going to have a lot of time in therapy waiting rooms. Might as well enjoy reading some check your brain at the door novels. Know it’s okay to get absolutely nothing done on some days. Or weeks.

2. Get off the Internet. It can scare the crap out of you. Seriously, stop playing Dr. Autism Google. You’re looking for the autism cure needle in a Internet haystack. Step away from the search engine.

3. Get on the Internet. I know, opposite advice. Here’s the twist. Get on social networking sites. Talk to other parents. Get to know them. Not just what they did to treat X Y and Z. You’ll get a better understanding if those choices are right for you. Autism can make parents feel very isolated. Sometimes it is hard to get out and network. Facebook, Twitter, and online groups are awesome. Mainly because when you are in the dark on your kid’s iPad hoping like heck the melatonin will kick in soon, you can chat away. (Don’t you go Googling melatonin yet. You read this all first buddy!) Autism parents/caregivers are always awake somewhere on the planet.

4. Be prepared to hear a lot of advice you did not ask for. Warning, it never ends. I find sarcasm and raising my eyebrows over my glasses helps a lot.

5. Respect your elders in the ASD world. Now don’t go taking their world as gospel, but recognize what they do works for them. You’ll see why as you earn your stripes. The kiddo is 8 and we’ve been dealing with all things autism since he was before 2. Trust me newb, what you are telling me to try, we’ve done. Seriously, do you really want to be the type of person I just described in item number 4? Don’t be that know it all parent out the gate. Remember they have been sleep deprived much longer than you. They will be quick to shut you down.

6. Accept the fact that you are going to try stuff that is totally not going to work. That miracle thingie you just read about in a chat group won’t do jack all for your kid. Meanwhile every other kid who has, is thriving. It’s the luck of the draw with this folks. You meet one kid with autism, you have only met one kid with autism. Some cures/therapy/meds will be duds.

7. Autism is effing expensive. So when Grandma or Uncle Frank wants to know what your lovey wants for their birthday, CASH IS KING! Don’t be afraid to ask for therapy and or lessons for something as gifts. These folks care about you and your kid. They’ll be happy to know what they bought is actually getting used. Not sitting around collecting dust.

8. Accept that some folks who buy gifts for your kid won’t do the above. You’re going to get a lot of gifts that your kid won’t even be remotely interested in. They meant well. They knew it was a hot toy. Save it. You never know. Maybe in a year or two, they might like it. Or donate it. Regift it. Return it for therapy cash.

9. Be open to doing stuff you think is ridiculous. You really just don’t know what your kid is going to respond too. Give it an honest college try before you realize if it’s a hit or a miss. This means diet, meds, therapy, supplements etc. Just try.

10. Take your kid out everywhere. I’m serious. It may be small trips at first, but it is the best thing you can do. You’re teaching them coping skills. Life happens. People have to food shop, go to the bank, post office etc. You would be doing it anyway, if they didn’t have autism. Know their limits of course. Baby steps first. Today, it’s a trip to buy milk. Another time, maybe it’s a trip to the pet store and the library. Life from now on will take military like planning. Warn them what’s coming, but go about your business. They smell fear. Seriously, the more panicked you are, they will turn that dial to “11″.

11. Allow yourself a pity party. Moan, cry, rant and rave and do it when you need too. More than once. Just remember you still have a kid that needs you. So, don’t dwell in it too long. If you find yourself doing it to far to frequently, know when to ask for help. Be it from a partner, family member, friend, or doctor. Yes, this isn’t what you planned but it’s here. So, now what? Exactly.

This isn’t about getting through it to an end point, this is your life now. This is your new normal. I can’t promise it will get easier. You will just get better at dealing with it. Be it through humor, prayer, yoga, crafting, blogging, or a thousand other escapism activities. You will do this. You can do this. Remember for as hard as you are working, so is your child. So now and then, relax and just order another side of fries.

Related post: 6 Perks to Having an Autistic Child