One Year Ago Today, Autism Moved In. Thank God I am Not Where I was Then.

Today is our one year anniversary.

We were at his 3-year-old well check up.

It was already on my list of things to ask the doctor about.

Autism.

 

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On April 7, 2017, we went in for a regular well visit for my youngest son. We had finally completed all the post-operative follow ups from the brain surgery. For sure, the worst was behind us. That’s what I kept telling myself. Also, I am usually considered someone a little anxious, perhaps a little hypochondriac-ish. I didn’t believe wholeheartedly that my diagnosis was on point, but I needed validation. I wasn’t crazy. This was harder than regular parenting. His behaviors surely indicated the need to look further into the “why.” It wasn’t supposed to be this hard, and I needed someone, a professional, to validate me. I needed someone to justify to me why staying home with my child day in and day out was becoming something of a terror. Why couldn’t I make sense of his needs, his obsessions, his anger? What was going to make it change? Yet, the validation of autism only made it better briefly. Great! I wasn’t crazy. But, if I wasn’t by then, the next few months and years were surely going to test my limits. They were guaranteed to push me to my borders of sanity and ability to control my own anxiety.

As I left that visit, my head was spinning in more ways than one. Physically it was, from the chasing him through hallways, attempting the impossible task of staying one step ahead of his climbing, flipping light switches on and off during my discussion with the doctor, and yanking her laptop off her rolling desk. I was doing my best to prevent him from getting into everything he shouldn’t, every cabinet, drawer, and door that was unlocked at the doctor’s office. We finally got back to the car. He grasped at two broken pieces of chalk that the doctor had let him keep in his tightly closed little fists, since “pick your battles” was one of our main discussion points. How was I going to decide which battles were worth picking? The battles were fierce and wildly changing on a minute to minute basis.

How was I going to deal with this, nonstop, possibly forever? The toddler years come and go for most parents, but will mine? Maybe autism won’t let him mature beyond 5 or 6 years old mentally. Of course, my head went there immediately. I wasn’t able to think clearly. Could you blame me? When he was finally buckled in, I sat down to breathe and try to collect my thoughts.

 

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Thus began the journey, the change, the world upside down. I suddenly saw all the things we weren’t going to get to do together or have, and I couldn’t see anything that we still would. It began a whirlwind of sleepless nights, either because he was screaming and repeatedly kicking his walls and bedroom door, or because he was quiet, and I was up all night on the internet searching everything I could find autsim related.  I read hundreds of research articles. I joined every Facebook support group I could find. I contacted every mother of an autistic child I could think of. I needed more information. There had to be a way we could “make this better.” I was grasping for straws. I was desperate. I was not going to give up on figuring out how to make my child seem the “least autistic” possible. That sounds terrible, but it is honest. It’s where my head was at. I paid hundreds of dollars to take ABA and behavior modification and language building courses, continuing educations for speech therapists and ABA therapists. I was going to get control of the situation. I reduced my job hours and our income significantly to pursue everything possible for him. If only I could get back control.

 

Control.

If I could control everything, every, single, thing, then… this could all be better.

The truth is, there was very little I had control over.

I couldn’t shorten waitlists.

I couldn’t  make the diagnosis go away.

I couldn’t make him enjoy being around peers, or enjoy saying hello to people.

I couldn’t make him behave like other kids.

I don’t even know why I felt that I had to, but I felt it so strongly.

Control.

I had to learn to give it up.

 

 

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That was where I came from. Thank God, it is not where I am today.  I can look back at where I was, and see how far we have all come. Autism initiated a transformation in each family member living in our home. It was a painful, but necessary, process. Some wonderful therapists have guided each of us through this progression of accepting who we are, but also helped us to perform at our reasonable best.

I know that ahead of us lies a very long road of unknowns, but whose life doesn’t? 

To anyone newly going through this, I have some advice. Cry, as often as you need to. Get counseling for yourself. Talk to someone about your anxieties, worries, fears, anger, and grief. Get to know what worked and didn’t for others going through it. Dress yourself up nicely from time to time. Feel good about your physical appearance, even though you might feel worn and exhausted. Accept that your life is still great. Perhaps, the most important thing would be to enjoy your child. See them as the beautiful human that they are. See the good in them. See the gains they have made. See that their unique characteristics are to be valued. Then, when you’ve got your feet back on the ground, be the person for someone else that you wish you had when your child first got the diagnosis. Someone else, going through this, feels alone right now. I promise you, just letting someone know that you have been there and are able to relate, can make all the difference in the world in how somebody else’s journey begins.

 

 

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To the Glass Sibling of Autism. I See You. You Matter Just as Much as He Does.

To my beautiful first-born son.

From the moment I found out I was pregnant with you, we had a wonderful special connection.  A relationship like no other in my life before that. A love that surpassed anything I had ever known, because I was going to be responsible for everything about you, and making sure that you had the best tools to grow up healthy, and into an equipped man of character and honor. What I didn’t see ahead of time, was that the challenges you and I would face together would be bigger than I thought, and start at a much younger age than I thought. And I want you to know, my very special SuperOmar, I see you. You matter to me.

Tremendously.

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When autism is kicking in at full force, and we are dealing with your brother’s particular desire of the moment, with his particular need for the moment, and you have to surrender everything you were hoping for in that moment for us to deal with calming him down, you show marvelous grace.  When it gets to be unruly, uncomfortable, and when it takes everything you have in that moment, I see you.

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On easier days, I still see you.  I see you giggling in the rearview mirror, when he says or does something very odd, but we love him so we accept it for who he is with laughter in love.

I see you, when he is climbing over your head and he winds up kicking you or smashing your face into the ground while he laughs, thinking it is OK. I am so thankful that instead of throwing him off, you smile and accept him, for exactly who he is, without trying to change him.

I see you, when you have to put down something you were deeply engaged with and loved doing, to watch him for me, so I can get something done in the kitchen, like make a meal, or wash the dishes.

I see you, when you have to let him have things his way and make the hard choice not to ignite a battle that is unnecessary in that moment.

I see all the ways you have allowed sacrifice and selflessness to abound more than greed and anger.

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I have seen you give him the chance to hold one of your most special fragile toys in pure love and acceptance of him.

I have seen when you have offered him some of your favorite snack, without a second thought, because he is your family and you love him.

I have seen you defend him, love him, choose his well being, protect him, explain him, help him, and love him in a way that words cannot even do justice.

I see the way you go out of your way to investigate and know what matters to him, to speak to him in a way meaningful to him, and to share in his excitements, joys, interests, and hurts.

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When it seems embarrassing or scary or unfair. I see that you love him still.

I see you, when you walk to school by yourself and give me a second and third look back before heading off completely on your own to the bus stop. I see what you have given up for him. I see your independence growing earlier than most others your age, because life demanded that of you, perhaps a little, or a lot, too soon.

I have seen your unfailing love for him which is beautiful, admirable, and impressive for your age. But, I don’t want you to forget in all of that, that I see you too.  I see the intelligent, curious, problem solving, sensitive, loving, amazing young man that you are shaping into.  I am so proud of you. I am so inspired by you. I just want you to know, while Lucas seems to demand all of me so often, I still see you, even then. You matter to me just as much as he does. I am honored to be your mother.

It breaks my heart, yet grows my heart infinitely at the same time, to see your struggle and maturation.  You have stepped up to handle what life has given us in the most commendable, merciful, loving way possible. I am grateful for you always. From the bottom of my heart, thank you, and I am here for you as much as for him.

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I see you too.

 

Love,

Mom.

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Some weeks I feel Defeated, but I Refuse to Stay That Way. My Sun will Rise Again.

Last week was a hard week for me. I had several meetings and updates from Lucas’ service providers. I also had a meeting for my older son to discuss ADHD accommodations in his school. One thing I have learned so far in this journey fighting for disability rights and inclusion is that there are seldom times where things come easy.  Services have to be fought for. Diagnoses have to be fought for. Your child’s rights have to be fought for. Insurances have to be appealed. There are endless evaluations from developmental disability service providers, psychologists, doctors, special tests like EEGs and MRIs, and therapists. Assessment after assessment. Result visit after result visit. You go to test after test. Doctor after doctor. Switch doctors. Second opinions. Medications. Change medications or dosages. Continue to vaccinate or not? Another product is suggested that could help a lot, but it costs 500 dollars. Social security, disability, and Medicaid applications. Endless forms to prepare to apply. We make too much money anyway, but we are supposed to apply in hopes the government will help with the excess financial and medical ‘burden’ on us. I admit, just typing this list makes me feel nauseous, like the mountain of weight on my shoulders is too much to bear. It doesn’t even stop there…

 

 

The providers all seem to say indirectly:

Here is a list, that is not comprehensive, of all the things wrong.

“Here is another way ABA could help your child, if only you could perfectly follow through with the parent training” Or else, you can spend 100 percent of your time dealing with the tantrums, which not following through consistently, will result in.

More plans get created to address his needs, yet they never seem to coordinate well with every other provider’s simultaneous plan.

Here are all your battles that you have to keep fighting now, will begin to have to fight soon, and/or will keep having to fight for the rest of his life.

While spending an exhaustive amount of energy with these matters, I am expected to also manage a job, and be a great mother to two boys who need a LOT from me.  But… there is not enough energy to be all these things well.  I fail often. I regret it. I question my choices. I try to rearrange priorities. But it all starts again the next day, or the next week.  It isn’t fair. It isn’t going to get a whole lot better either. I need to learn to manage all of this.

And I know that I am the kind of person who figures this all out. I will figure it all out. I surrender it all to God on a daily basis. But there are times where I just feel defeated.

At one meeting, I spent two hours discussing the terribly long list of things Lucas needs help with at ABA… the eloping, the toileting, the using his words more, the sharing nicely with peers, the kicking, the biting, the tantrum intensities, the being mean to our cat, the climbing all things in our house constantly.  We analyze and reanalyze. The BCBA in charge of his plan shows me data graph after data graph of how he has progressed, but none of it makes that much sense to me in the whirlwind of simultaneously trying to hold onto what he has been doing well verses how much work he still has ahead of him.  I lose site of what she is saying to me, as I take notes vigorously to remember it later. I am really just staring at Lucas as he climbs up on the counter top again, wondering when is the ABA therapist going to get him down who is working with him in the other room, while I meet with the supervisor at the kitchen table.

The next day I pick Lucas up at preschool, where the special  needs teacher runs up to talk to me, who herself is overwhelmed with a class too big for her to address each child’s individual needs well. I hope she is going to say something refreshing, but I can tell by the look on her face that she isn’t.  She says “Lucas was acting a bit strange today. He was hiding under the class rug throughout the day when we were doing other things.  During circle time, he wanted to be with his head on the ground and bottom up in the air, and wouldn’t change his position.” And, she looked at me and said “Come on buddy you can do better than this… Since he started ABA… blah, blah, blah…” And in that moment, I was in a bit of shock.  Her words faded out, because I couldn’t believe what she was saying. Did I really need to know how she thought my son’s behaviors were weird? Ridiculous even? I mean do you know what autism is? It is partially defined by repetitive odd behaviors. I didn’t have the energy to say anything back.  I disagree with her. She feels that ABA has not been great for his ability to participate in preschool well and tells me often.

I just can’t imagine why she thought I needed to hear those comments. Those are things for her to manage while she is with him.  I came back with, well he is using a lot more words and talking in so much more detail, rather than having problem behaviors as fast, in relation to interacting with other kids. Yes that is true she smiled! How fast we are to point out all the things that “need work.”  I am really tired of hearing the ‘not good’ stuff. Sometimes there are too many to take. I still have another son and a husband and my own health to take care of. I cannot bear the weight of the world on my shoulders and fix every quirk that Lucas has because the teacher thought it was a bit ‘ridiculous.’

I try and I try. I plan, and plan and redesign my plans. I schedule and change my schedule. And repeat.

Don’t get me wrong. There are plenty of amazing people who are helping Lucas alongside me. Some amazing therapists and specialists. However, there is something seriously flawed in the way all of these people interacting with this very special little human being and his mother, rarely think of saying, “Your child is beautiful. Your child is amazing. Your child did some wonderful things today. Your child had some wonderful communication attempts today. Your child had a precious smile today. Your child did anything worth praising today.” It’s like as soon as anyone sees me, who had been with Lucas before me, feels the need to immediately tell me all the things that went wrong.

 

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I am really tired of it.

So I will say it now to remind you, to remind them, and to remind myself. My child is amazing. My child is a blessing. My child has a super sense of humor. My child has the best, tightest, warm hugs. My child gives the most delicious kisses. My child has made immense gains in self control and speech. He has the most contagious lovely laugh. My son has the sweetest eyes when he looks at me and smiles, excited and fulfilled to see me. My son has a tender heart, always caring when his brother is getting in trouble or is crying about something.  My son is very intelligent. My son cares about having friends. My son just wants to be loved and accepted. My son is worthy of that. I won’t let the world convince me of anything less. And, I have got your precious back, I promise you.

And who shall sustain me while I sustain you? I give all thanks to my Father in Heaven, for His love revives me. When I feel like the darkness presses in, he restores my sunlight.

 

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And a special thank you to Omar, my precious other child, who designed this Blog’s headlining beautiful little play dough sun and inspires me daily.

 

 

Cross Country Traveling, With my Spirited Four-Year-Old, Autism, and No Stroller! What was I Thinking?

Well, I’ll tell you what I was thinking. Make sure to pack my anti-depressant and anti-anxiety meds! I kid… but not really.  I was thinking that when my husband said, “I have something terrible to bring up. The stroller won’t fit in the car with all our luggage,” that we would somehow make this work. Just like we always make things work. But, I’ll tell you how it actually went down. I spent a lot of time chasing, yelling, bribing, pinning down my autistic son at numerous locations throughout the trip, crying, regretting, asking myself was this worth it? Do I ever want to travel again with this boy? The short answer is yes. I love him dearly. For the long answer… keep reading, as I provide some information on what did, and what did not, work well for us.

Looks Can Be Deceiving.

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Oh, don’t let these sweet innocent faces fool you from believing what they are capable of! Things can go from harmony to anarchy in less than 10 seconds…

I’ll admit, things started out simple enough. We entered the airport with two excited kids, and a husband carrying way more luggage and car seats than one might think humanly possible.  It wasn’t perfect, but we were determined. I quickly ran through my to-do list in my head.  Review the visual schedule with my son with autism. CHECK.  Snacks, IPADs, chargers, pullups, bribing candies all packed. CHECK!  Any liquids placed in easy to find zip-locks, meeting all TSA requirements. CHECK.

Uncontrollable autism behaviors going to happen regardless? YOU BET.

I had done everything I could to prepare him. I had presented Lucas with drawings and cartoons of children waiting on line, holding hands with their mom and dad, walking and not running, flying happily in an airplane after waiting in the terminal. But seriously, self control in a spacious airport while not restrained in a stroller? Think again. There was a point while trying to walk through the security gate, where I literally thought to myself, “I will never do this again.” Every. Single. Task… is much harder when traveling with said autistic child. Now of course, he is part of our family, and I will move mountains for him if I could. But truth is truth. When you are standing in line, wearing both a maximally filled book bag and diaper bag, pulling a large rolling luggage with a car seat attached, while pinning a screaming, curious, defiant, and kicking autistic preschooler under one arm at the same time, you ask yourself some questions. You rethink ever planning this trip in the first place.  You look around in that moment, and although you don’t want to, you wonder, is all of this worth it?  We convince ourselves, that “sure, it is!” And, we move on through the next challenge.

Check in your Luggage.

Why did we think we should not check in more luggage?!

We thought we could cut some financial corners. But, heaven knows, it would have been much easier if we had checked in additional luggage. My advice: pay the extra fee. Having eight carry-on bags, with only two adults able to carry these bags, and no stroller, while simultaneously trying to manage a vivacious sensory seeking, runner, escape artist youngster, or any toddler/preschooler for that matter, also on the trip, will test your sanity and ability to parent well under pressure. With what free hand were we supposed to catch this little guy, who is also an expert at dropping to his knees once grabbed, every time he tried to flee, explore, dip under waiting line belts and ropes, or follow random shape patterns he found interesting along the floor?  Bright side? We saved money not checking in luggage! Score!

A Family that Sticks Together Gets on the Same Train Together.

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This might sound a little obvious or strange. But a word of advice? Keep your entire family closely at your side when you board an airport shuttle service train! After a long delay and flight, we were finally on land and ready to board the train to our rental car. But, guess what? Those doors close amazingly fast! Thankfully, all the kids were safely with Mom on one side of those closing doors! We were able to meet my husband at the destination. It just meant a lot more fun for me to try to balance all the luggage (on wheels) and two exhausted, but still very energetic kids, on a moving, but frequently stopping, train. We survived! What is life without adventure? We laugh often to embrace the joy in most of our challenging situations.

Simple Things are not Simple for Us.

Church? I will spare you the media, but he crawled under the pews and reached between the seat and wall and pulled out a sticky mouse trap! Ahh! All the while I am keeping things quiet and discreet less anybody realize the horror!

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Restaurant? He will sit under his seat and watch his favorite movie. Bonus? He created his very own border, to prevent easy escaping, without even realizing!

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Visiting family? Get that vestibular system going to help keep him regulated!

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Why Persevere? Because, Good Friends and Family are Everything!

“Happy is the home that welcomes a friend.”

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So, was it all worth it? Absolutely! I wouldn’t have given up the chance to spend time with some fabulous people. Some of who did their absolute best to ease the emotional and physical challenges of the trip! And, there are very few things that a homemade slice of some amazing chocolate cake and a cappuccino with cinnamon on top can’t make, at least a little, better.

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To all who welcomed us, loved us, and helped us, we thank you from the very bottom of our exhausted, but filled, hearts!

We will see you all again… many years from now… just kidding… We hope to see you all again soon!

Was traveling and autism hard? Yes! Was it all worth it? Absolutely.

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In the meantime, we are home safe, and Lucas has got a few new buddies to keep him company, important treasures and memories that he gathered along the trip.

This Morning I Continue to Learn some Valuable Lessons from Dory.

I have learned a lot from Marlin and Dory (the Pixar fish) in the many times my son has watched these movies. I’ll be honest, I usually use this time to get a break! I know that him watching Finding Dory gives me at least an hour of time that he won’t demand something from me when I am occupied with my other son, or chores, or just need a few minutes of peace to myself. But there have been quite a few times where I was close enough to him to hear some pretty inspirational quotes.

Some of my Favorites

About being brave enough to let your child try something hard on their own, so they can learn the lesson and build character and strength:

“Well, you never really know, but when they know, you know, y’know?”

In regards to all the many therapies and parenting strategies I have considered, tried, failed, and tried again:

“Well then, how are we gonna do that unless we give it a shot and hope for the best?”

For the control freak parent with anxiety, your thoughts will tell you all the reasons why you shouldn’t let your child try the thing they really want to try that you think is a bad idea:

“Well, you can’t never let anything happen to him. Then nothing would ever happen to him.”

So this morning I am grateful, that there is inspiration all around us, if we take the time to consider it.

The Magic Powers in a Mother’s Kiss.

I left Lucas in bed last night to get his favorite book. Lately, he hasn’t been able to go to bed without it. The book is about a little mouse getting dressed. He’s been repeating this story over and over all day excitedly.

While I was looking for the book, which had been with us all day and could be anywhere at this point, I heard frantic painful sounding screams from his bedroom! I ran back to his room and he was crying on his side pleading “MAMA, can you kiss me right there!” His face was beet red and his eyes and mouth were contorted in pain, tears streaming down his cheeks. He couldn’t explain to me in words what had happened. He pointed again at the exact spot between his ear and neck and repeated through a desperate quivering whimper. He knew he didn’t have all the words to explain what happened. He also knew that he was scared and hurt from what had just happened. As his tears fell, he waited for my kiss to relieve him.

How sweet the tender moments…

My little guy is a dare devil, and I’m pretty sure he fell tying to leap from the bed post, over the diaper genie, to the changing table and back, before I got back to read the book.

Autism, communication deficits, hyperactivity, little impulse control, and poor safety awareness, are a scary combination. Just last week, he bumped his mouth on big brother’s head, and we wound up cancelling everything the next day and making his first (and hopefully last) emergency dentist visit.

I am always guessing for him. Doing what I can to understand him and keep him happy and safe. I can’t fix everything for him, but I am so thankful that my kiss was able to make it better this time.

To my Friends and Family. I Will Never be the Same. Autism has Changed Me Forever.

Let me start by saying thank you. To each and every person that has sincerely tried to hear out my fears, let me vent the worst of the worst of me and of our situations, and shared hopes and dreams and failures with me.  I appreciate you.  I really do, believe me.  But I have to confess something to you.  Something down to the very core has changed for me, and I will never be the same person you used to know again.  God willing, I will be a better person, but there is no going back to who I was before the diagnosis.

I know a joy like no other, parenting my two beautiful boys.  But, I also feel very alone, anxious, and defeated at times.  It is nobody’s fault. But, it is true.  The fears I face are unique. The battles I fight are exhausting.  The worry I will do is on a different level than I have ever worried before.

I see the looks people give. The smile that sort of fades into an awkward look and silence, while they try to relate to what I am going through, but they can’t.  They want to help, but don’t know how.  They try to reach Lucas, but don’t yet know or understand his language and triggers.

Then it happens.  I have to choose him over you. 

I have to.  Maybe as he gets older, he will learn more strategies to regulate his words and behaviors more easily and more independently. But for now, I have to focus all my attention on him in order to get us through each task.  I have tried not to do that.  It usually winds up in him hurting someone else or himself or coming very close to it.  Or, it results in him escaping.  He does that you see.  It’s something that must always be at the forefront of my mind, whenever I am in his presence, and explain to anyone who agrees to watch him.  He will escape, in a heartbeat. And, before you know it, he will have climbed the highest thing around, or run out of the door to the place we thought he was safe in.  He will do things you wouldn’t expect, and so I must expect them.  All the time.  So, please understand.  I really do want to maintain a relationship with you.  But he consumes me, and that is OK. It is my role as his mother.  I hope you can accept this change.

If I try to hold him in my arms or lap while we talk, I might not really get everything you are saying.  I will be dodging ear pulls, eye pokes, choke holds, knees to the throat and chest, and blocking him from hitting his head as he thrusts his body this way and that and upside down.  You might smile.  You might try to distract him.  But this is my life now.  A constant involvement in his safety and well-being.  It takes most of my brain to handle, at all times.

I spend a lot of time wondering.  Will people love him? Will peers want to be his genuine friend?  Will they try to understand him? And will they try again if he didn’t respond after the first attempt? After their second and third?  These questions are hard enough for regular parents, but adding a disability, a challenge to understanding him makes them specific to this situation. Will he feel lonely?  I wonder, If I were disabled, who would take care of him.

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And bless you, if you have brought another child around for him to play with.  I have to inform you though. My child might snatch, he might bite, he might kick, he might shove, he might yell, he might want things only one way over and over again, until your child wants nothing else to do with him.  Please help your child understand, Lucas is just trying to understand how to connect with them in a way that makes sense to him.  He probably won’t use the toys the way your child will.  It will take all of my attention to assure your child’s safety, while you try to have a conversation with me.  I will always be watching him, more than I am able to pay attention to the conversation I am having with you.  He will probably climb into or on top of something you would have never pictured possible.  He might use strange words that don’t makes sense to you or your child.  He might demand that no one else can touch a certain color or item.  This is his world, and he is trying to share it with you.

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You see, autism has changed me.  It has consumed me.  It is not going away.  I really do miss who I used to be.  I’ve had to mourn my old identity. But I am also honored to take on my new one.

So, for those friends and family who are in this with us for the long haul, please be willing to give up the way things were, so that we can move forward the way things are.  To those who don’t or won’t get it, I will cherish what we had before I changed.  My world is different now. And to my new friends, who I have met on this journey, who are going through the same battles and joys, welcome to my life.  I treasure you as well.