The Uphill Battle of Being a Caregiver

img_6835I cried on my way to work this morning. Not because I was sad.  I cried because being Cooper’s mom turns me into someone I don’t like. I feel trapped. And alone. And so utterly overwhelmed. And like I need to make threats to make his life easier.

I don’t ever feel like I’m doing enough. Or the right thing.

The special education system is a constant uphill fight with a 200 lb pack on your back and no food or water. Nothing comes easy. Not one part of it. And I feel like an animal that has been caged into a corner to protect its kid and I need to fight my way out.

Dramatic? Maybe. But it’s the truth. Not one change or decision in Cooper’s special education life has come easy. Every part is 23 phone calls, 17 emails, 5 people, a dozen dead ends, and then picking yourself up and starting over.

This is the part of being a caregiver that is the hardest. Fighting for services. Fighting for equal and fair rights. Fighting for a sense of normalcy.

And it’s not always the people. We have dozens of people in Cooper’s life that are amazing. They are working to help him and give him the best options around. I think it’s more the system. The system is broken.

So what happened.

Cooper’s bus driver pulled up this morning and greeted us with a smile. He is the nicest man ever. He told me that Cooper still doesn’t have a ride home. He’s like, ‘I can take him. I’ve asked the officer every day if I should bring Cooper home and I get no response.’ He’s like, ‘I obviously won’t leave him but you should call in and see what’s going on.’

This came after Cooper woke me up at 4:45 am. And after I had a standoff with Sawyer over his breakfast that involved a time out, a thrown remote and a brotherly brawl.  And after I got Cooper dressed for his school pictures knowing that he probably won’t take one. And won’t be in the year book. And after I wrestled Cooper’s kindle out of his strong, sticky hands and after he gave me a kick to the stomach so on point it took my breath away. And after we waited in the front yard for the bus for 12 minutes because it was late. And no one on this earth will ever understand what a bus being late does to an autistic kid.

So, when the bus driver told me that Cooper STILL didn’t have a ride home after I’ve made 7 phone calls and sent 3 emails, and filled out a form, all starting two weeks ago, I knew I was going to lose my shit.

I piled Sawyer in the car, put a movie on, and made the call. And was promptly transferred 3 times after explaining the situation 3 times. And I was friendly all three time. I know that being nice and sweet will get me farther than being a bitch. I’m not an idiot.

It just doesn’t make sense to me.

My kid, a student in the school district, needs a bus ride home. He’s not a gremlin. He doesn’t need to be levitated. Or have a limo bring him home. He needs the damn bus to bring him home on Tuesday’s and Thursdays.

Yes, I called 2 weeks ago. Yes, I called a week ago. Yes, I filled out the form. Mind you this form is only needed for special education students. Yes, the form was signed by his case worker. I didn’t even know we had a case worker at school. Yes, the form was given to his teacher. Yes, I called three times last week and yesterday. Yes, the bus driver confirmed to me that he can bring Cooper home.

Her answer, ‘we still do not have transportation home for your son ma’am.

And then I lost it. I demanded to know why this is so difficult.  I’ve been calling for 2 weeks. I’ve spoke to a dozen people. I told her I’d go to the damn school board if my kid didn’t have a bus ride home today. I can’t make one more phone call about this or ask one more time. He is a kid that needs a bus. Put him on a bus.

In my head I was thinking I will go so far up the school board ladder I will be camping in the damn president’s front yard. Try me lady. I cannot leave work early again to pick up Cooper from school. I have a job. That I’m going to lose.  I just can’t. I also need to him to be on some sort of set schedule. This needs to happen. Please, please, please get my kid on a bus home. Please, help me. Wah, Wah, Wah.

And my voice broke.

As I hung up she reassured me she’d take care of it immediately.

And then I dropped Sawyer off at daycare. He clung to me and screamed and cried and said he missed me and wanted 7 more hugs and 2 kisses. His words, not mine. I felt terrible.

And I got in my truck and completely lost it.

Why? I want to know why it’s so hard for these kids. I want to know why I have to become absolutely batshit crazy to get any sort of response. It just doesn’t make sense to me.

I am a calm person. I am a problem solver. I am patient. I love my son. I love his people. So why?

I had a phone call within 30 minutes saying that Cooper’s transportation was all set up and good to go.

And that’s great. So happy. So relieved.

But why does it need to get to this level?

Why does being his mom bring me to this level of crazy that I didn’t even know was possible. With Sawyer I feel like it’s all so easy. Good things happen for him. He’s an easy going kid and he’s popular. He’s happy. He loves his daycare. He will go to kindergarten. He will play sports. He will make friends.

With Cooper it’s just different. And that’s so not fair. His life is hard. He is hard. Being his mom is hard. And the system is hard.

The system is broken for caregivers. I’m not saying I know how to fix it…but I know there needs to be a change.

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I Do It For Me

14249202_1443892728954516_912775185_nWell, he’s off to his first day of school. The bus driver and aide were amazing. They pulled up, opened the door, and shouted out….’is there a Cooper here that needs a ride to school?‘ Cooper of course turned and ran the other way laughing and giggling. So, in true Swenson fashion, I brought him flailing and kicking to the bus. He was in good spirits though.

I gave the aide a handful of starburst for the ride. Also, true Swenson fashion. We believe in bribery here.

I’m super worried about his first day. He doesn’t do well with new situations or new people. He also did not have a bond with his teacher. Not in any way. That scares me. Lots of firsts for him as well. All day school, multiple classrooms, school lunch, trying to eat ‘typical’ food and drink from a straw, a bus ride home. So much change. Fingers crossed.

I can’t imagine being nonverbal in a new setting. Not being able to speak or ask for help. His only form of true communication is screaming and sometimes hitting his head or kicking. How, as a mom, do I know that the teachers are going to love him and be patient with him. I don’t. I have to trust that an autism, special ed teacher is doing this profession because they love children. And love helping them succeed. I have to pray. Because that kid can’t tell me how his day went. He can’t tell me if he was ignored. Or bullied. Or yelled at. I am at the mercy of the school.

And that my friends is damn scary.

I hugged Cooper goodbye this morning and whispered in his ear….’Be brave sweet boy. You got this.’ And he laughed and laughed and gave me a good squeeze.

I know he will be fine. In 2 weeks this will be good. He will make it.We will make it. But until then we are on a roller coaster ride. I know his sleeping will suffer. He will regress in potty training. He will lash out. His aggression will soar.

It should level out though.

2 weeks. Fingers crossed.

I took pictures this morning of his first day. I wasn’t going too. This is his 3 year of school.

I laid in bed last night and scrolled through Facebook and looked at all of the adorable kids starting school. Huge smiles or tears or whatever. New clothes. Proud parents. So much excitement. Cooper doesn’t care. I’m not entirely sure he even understands.

So, last night,  I told myself I wasn’t going to make a sign. I wasn’t going to put it on Facebook. I wasn’t going to make a big deal about it. Because, I was just doing it for myself. And I knew it would be a fight.Getting the pictures would be impossible. I’d get stressed. He’d get stressed.

I kept thinking, ‘why do normal things for my autistic kid?’ No one cares. He doesn’t care.

I woke up this morning and I felt terrible.

I felt like a terrible mother.

And I made the sign. And I took the dang pictures. And they turned out perfect. 66 tries and a package of Starburst can get you anything in this home.🙂

He’s adorable. God he’s cute.

So why? Why do it?

I do it for me. I take these pictures for me. I throw the birthday parties for me. I pretend for me. I selfishly pretend that he is going to be ok….even just for a few pictures.

My baby started kindergarten today. We did it. No need to pretend about that.

I am the mom of a kindergartner. And that is why I made the damn sign.

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The Kindergarten Assessment From Hell

img_6780This is going to be a bad post. It’s going to be honest and ugly. So judge away judgy mcjudgers.If you are a friend or care about Cooper and I please be kind. It’s a dark day over here.

I just came from Cooper’s Kindergarten Assessment. It was terrible. It was actually beyond terrible. I try and look at the bright side and figure out how it could have been worse. No one died I guess. He didn’t pull the fire alarm.

Other than that…it couldn’t have been worse. And we even prepared just like we are supposed too. We talked the whole way to the school. 15 minutes of talking about his new teachers and his new school and all of the fun things that were going to happen.

And 45 minutes later here I am…spiraling. Wondering why. Wondering why me. What did I do wrong.

I truly, really, deep down thought I was past this. I thought I was past driving home and truly hating my child. Thinking about how I did everything right when I was pregnant. I didn’t drink alcohol. I didn’t smoke or do drugs. I exercised. I did it all right. I decorated the nursery. I prepared like every other mother. And I got robbed.

I thought I was past those feelings.

I thought I was past looking in the backseat at him playing on his IPad and wondering what the fuck I did wrong. Wondering how I got the most messed up kid in the world.

I thought I was past watching the little girls and boys walking into the school carrying their backpacks and laughing and watching the parents snap pictures. Hating them for their excitement. Hating Facebook. Hating schools. Hating the world.

This is my third damn year. We did 3K and then 4K and I felt all of those feelings. Feelings of hatred towards Cooper for being so different and making my life so hard. (I DO NOT HATE MY SON. I LOVE HIM MORE THAN LIFE.) Feelings of hating the teachers because they make us do those damn fucking assessments when I told them it wouldn’t work. I told them it would be terrible. And most of all the feelings of being so utterly alone with this kid and having no one to talk to you. Because no one understands. They will never understand.

So what happened…he screamed from the second we pulled in the parking lot. He walked in screaming. Everyone stared. We walked into the cutest classroom that I could tell had been meticulously decorated by an uber excited teacher. And I watched Cooper tear it apart. He knocked over bins, chairs, cleared off whole tables. He ran, darted, rolled, kicked and screamed. He turned into an absolute maniac.

Within seconds I was drenched in sweat. Partly from chasing, partly from feeling the eyes on me and partly out of full blown stress because I don’t know what to do.

If you are a teacher…or a medical professional…and you are watching a parent struggle….tell them what to do. They want to know what to do. Do they intervene? Do they watch? Do they help? Just tell them.

At one point Cooper knocked over a bin with thousands of crayons. No lie. I have never seen so many crayons go flying.  And then ripped decorations off a wall. I couldn’t stop him. I know these teachers hate him. I know they are giving knowing glances to each other behind my back. I know he is terrible.

He kicked both the teachers in the stomach. He hit one in the face with a basket of glue.

And then I started silently crying. The kind where the tears leak a little bit and you can’t actually talk.

Once he began hitting himself repeatedly in the head we all knew it was done. We weren’t accomplishing anything.

And we just sorta left and I sweat to God I felt a breath of relief from around us.

We walked out past the normal kids and their parents. We got into the truck. Cooper requested his kindle and settled in for his ride home. And just like that he was happy. My kid was back. It’s like a case or split personalities. Except very few people see the joyous happy side.

And I cried.

And here I am again. The mom with the most messed up kid. Hating myself for thinking that. Knowing I need to pull it together and work. Knowing I need to print off his visual schedule for tomorrow and figure out if the bus is set up home and wondering how I can be such a horrible person. And always wondering what I did wrong to deserve this.

And wondering if I should pull him from school. I could home-school him. We could avoid the stress. I could try something different.

And I know this is hard for him. He’s a happy kid. He wouldn’t act so wild and out of control if he felt comfortable. I know that. That’s not lost on me. It’s hard on him.

But God it’s hard on me. It’s hard on the parents. I’ve yet to figure out how to describe it. A broken heart I guess.

When we pulled in the driveway I sat there and watched the rain and thought all my depressing thoughts. Cooper unbuckled and hugged me. On his own. Un-requested. He just did it. And that’s pretty much a first. He even touched my tears. How’s that for empathy.

And I wonder…is this it. 5 million terrible moments followed up by 1 hug and 1 kiss. Is that what I get? Should I be thankful for that?

I don’t know the answer.

What I do know is that he starts school tomorrow. And picture day is Monday. And it’s all going to be terrible. And I am going to wallow in my own self pity for a few days and grieve the first day of school I wish we could have had. I’m going to be sad and push people away and be alone on pity party island.

And I am going to bitch about filling out questionnaires about Cooper because no, I can’t describe my severely autistic child in 5 sentences. And yes I STRUGGLE TO DESCRIBE MY KID IN 3 WORDS when they aren’t ‘autistic, nonverbal, and frustrated.’  And yes, I don’t know what his likes are beside trains. And I don’t care what you work on this year. Just help us.

And I am going to cry as I pull out baby pictures of Cooper to create his ‘about me’ board for school.

I’m going to allow myself to be sad for a few days.

And then I’m going to pull it together and fix my shit. In the meantime though you can find me in my bed with a glass of wine binge watching Gilmore Girls.

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I Am So Proud Of Cooper…

img_6738As someone affiliated with Autism I have noticed if I browse through Pinterest or Facebook or any of the dozen support groups I am part of there is often a common theme….having a special needs child changes your life. Or defines you as a parent. Or teaches you lessons and makes you a better person.

I’ll be honest. I don’t feel that way yet. I haven’t ever actually. Every day is more like an episode of Ground Hogs day. He typically wakes up before 5 am. My anxiety about him waking up kicks in around 4 am. He will crawl into my bed and immediately snuggle me. It’s nice. I love it. Until he starts rubbing his feet on me. He can’t stop moving. I typically last 15 minutes and we are up. He immediately wants milk…that needs a laxative it, a snack…which has to be in a bowl. He needs the Kindle immediately. He wants the TV on..hopefully there are no WiFi issues for Netflix. If there are he watches the DVR. Either choice takes 5 minutes of choosing a program non verbally. I shush him 47 times because his brother his sleeping. I then lay back down. He will come in my room every 20 minutes like clockwork to change his show or because the Kindle locked up. He needs more snack. He pooped. Peed through.

And so the day begins. The same way it did the day before.

Every day is the same.

Kindle, trains, videos, DVD’s, VCR’s, so much poop, fighting over food, being chased by diapers, repeat. I typically ask him to turn down the sound on the Kindle over 100 times. No lie. By 5 pm I am screaming it. I’m not saint. I am human. I have a breaking point.

And to make it worse…I will beat myself up emotionally because I don’t feel like I’m doing enough. Or making a big enough difference. Why don’t I feel special. Or like I am changing the world by raising this kid. Why hasn’t he changed my life yet.

My point is that the special moments are hard to come by. I often forget that Cooper is a real kid. Yes, you read that right. I am honest. With no communication and very little interaction I just forget. So when I received a note last week from one of Cooper’s therapists I literally dropped to a chair to read it. And then I read it again. And again. And sent it to Cooper’s dad. And then I ugly cried.

The kid she described was so different than the kid I knew. Maybe I forget that he is out in the world for 8 hours a day….interacting. He isn’t a robot. He is a kid.  How did I not know that my kid is growing up? He is developing. Slowly. Ultra slowly. But still developing.

I give up every single day people. I start off strong. But by the end I am worn down and sad and exhausted. And with kindergarten starting I am sinking a little lower.

I think this note means more to me than anything so far in my sweet boys life. Cooper made a difference in someones life. He touched them. I am so proud of him.

Here is her note.

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“Kate! Thank YOU! I was so humbled to receive the card and gift card from you. Hearing from you this morning made me realize, a few days in, that I have somehow MORE to say that didn’t make your card. Babbling is a real skill of mine.

There is so much I will miss about working with your Cooper. It’s hard to communicate my daily joys with him via take home note (I often do not have time to write them until we are out at big gym) but there is so much that I looked forward to when he walked into the room. So much of Cooper cannot be reduced to a form note, so I hope you don’t mind if I tell you a little bit about our days together that never made those notes.

We started nearly every day with him running across the room and literally jumping into my arms or lap for a hug. No matter what my morning was like or my mood, I was so changed by those hugs and his head curled up on my shoulder.

Every day for the last few weeks he asked me for a laminated Thomas picture by saying “choo choo!” and imitating someone pulling a train whistle. It was the absolute cutest. His ingenuity and problem solving when it comes to nonverbal communication always amazes me. He loves when I whisper the Elmo song in his ears so he can be tickled by my breath and when I blow on his hair. I taught him to use his iPad to request “I want to see” if he wants to look out the window with me at the light rail and trucks. He loves to identify everything driving by with the words on his iPad and loves when we count or talk about the colors of cars.

Cooper put his arm around another child during music group the other day. It is someone he frequently has a mutually aggressive relationship with so it was really amazing to see them sitting so kindly together.

Cooper loves to sing a number song and then indicates it is his turn when he wants me to switch from “1 little 2 little 3 little numbers” to “1 little 2 little 3 little Coopers.”
He loves to look at himself in the mirror and dance and he loves alphabet puzzles. I taught him that his name and my name start with C, and now whenever we come to that piece, he looks at me expectantly. He loves animals and labeling them with his iPad on hallway walks. He loves hearing what letters various things start with, like “w is for window” and “d is for door.” He knows the intonations that accompany facial expressions and thinks the gravelly angry “GRRRRR” voice is the funniest. If we could sing “baby bumblebee” forever, I think he’d be happy, but is very partial to Pete the Cat as well. Sometimes when it seems like he’s been in the bathroom for an awfully long time, I peek in and he’s standing at the door listening to music playing in the other room. He particularly loves “Make a Man Out of You” from Mulan.

When Cooper and I take hallway breaks, he loves to be rolled around in a barrel. He also likes to peek back through the window into the classroom before we go back, and finds my staff photo on the sheet outside the door and points at both it and me. I am continuously amazed by the extent of his understanding.

We used to build tents out of giant mats and he and I could sit in there peacefully for 20 mins. Same with sitting under a giant blanket. He was never content to be in there without me, always pointing at me with the clearest message that I was supposed to sit in the 800°, airless fort too.

I am so proud of Cooper. I am so proud of the few things my inexperienced self taught him. I am so proud of the battles we fought that felt sometimes like they would never end and of his inability to hold a grudge. It amazed me every day that he saw you walking down the hallway and ran to you. His level of love and compassion amaze me and move me.

It has been a strange few days realizing that my life at Fraser will consist of a lot of kids cycling through my life. It has been hard realizing that someone with a sentimental heart like mine will have a difficult time working in a career where I grow to love kids and then they move on. I ache to help them all, but mostly so, I ache to soothe parents like you that worry you are not doing enough. I know finding babysitters and helpers and nannies must be difficult, and that you have to feel isolated and limited. I hope if there is anything ever that I can do for you, you remember how much I love Cooper, and that the privilege has been mine this entire time.

I chose years ago to work with kids with autism, but for me it is a job, and one I can leave at the end of the day. I don’t know if I’m articulating well, but I know your day to day is so so hard and you are thanked so infrequently and that you can’t clock out at 4:30 every evening and take a nap. I know how much your life has changed because of Cooper and I just want you to know that you are inspiring.

I found your blog via FB and it’s made me equally laugh and come close to tears. I have never heard anyone talk as honestly as you do and I know you are a beacon of hope and faith for so many parents. So often, as a society, we don’t like to talk about the true emotion and challenge that comes with autism. It is so much easier to just post inspirational quotes.

Over the years I know so many more people will fall in love with your son. He is SO. DAMN. CUTE. And he is so sweet and inquisitive. He has so changed my life and I can never thank you all enough for that.

Sorry for throwing so many words at you twice in a row now! I’ve never been the best at getting to the point. My mom kindly calls it “diarrhea of the mouth.” Nothing like a mothers love!

Part of me wanted to write all of this down so I never forget the little joys he and I shared every day. All of my coworkers in room 8 referred to us as “best buds” and it is sad to see my little friend go. Thank you for being gracious and allowing me to stay in touch with you all! Your family is so special to me. Happy Labor Day! Hope Coop lets you have a drink or two and watches some Little Einsteins. ❤️❤️

 

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A Thankless Job

14088725_1417495344927588_794622903_nYesterday we had another weekly visit from Cooper’s crisis social worker. It was great as usual. We laughed and told stories and talked about ways to help Cooper. More specifically ways to make life easier. I mentioned how the week before the electricity was out at the house and I lasted 15 minutes before I threw him the truck to watch a movie. That kid cannot survive without technology. In a 15 minute period he melted completely down over no WI-FI, useless remotes, VCR’s, DVD players, TV’s, kindles, etc. It wasn’t a pretty picture.

So, as we were driving him around, I was quickly reminded that Cooper won’t eat out of a drive thru. Not only does he only eat a few foods, he can’t always manage to feed himself finder foods. Like biting a chicken nugget can be challenging for him. He needs it cut up. That’s the apraxia side. Biting with the front of your mouth can be tough. Also, he only drinks milk and apple juice…out of his cup…or a Capri Sun…once in a while.

So. New goal. Drinking juice out of a cup with a straw. Or a to-go cup. Or anything different than his preferred sippy cup. I am so sick of those damn sippy cups. Half of my paycheck goes to buying new ones. He chews right through them. It’s a sensory thing. The crisis worker said bribe the hell out of him to get hm to touch the straw to his lips. Start once a day. Don’t force it. Start small.

As our conversation evolved we moved onto talking about the crisis workers job and how he is a realist. His job can be hard. He sees things he can’t always talk about. He isn’t about providing hope….he’s here to provide support. And make life easier. Lord I love this guy.

He told us a story about an autistic teen who watched his dad get murdered. And how the teen boy could not process it. He couldn’t get the words out to talk about it. Can you imagine? I told this guy that I often wonder if Cooper would notice if I died. I think about it a lot. I know that sounds weird but it’s a really valid question. And a sad part of nonverbal autism.

Cooper has very basic needs. He needs food, milk in his cup, someone to wipe his butt, change his diaper, press play on the remote, enter in the 4 digit code on the IPad, drive him to and from school….that’s about it. Anyone can do these things. These aren’t necessarily mom things. Or dad things.

Yes, Cooper wants love when he’s sad. Hugs when he gets hurt. Clapping when he does something well. But, I truly don’t know if he needs them from me. I will spend hours at night wondering if he would notice if I never came back. Could he express it? Would he take my picture to people and point to my face wondering where I am?

I think the answer is no. And that really hurts my heart.

Being a special needs mom is a very thankless job. It’s different than parenting a typical child.

It’s really sad.

Anyhoo, I wanted to share a blog post that was on The Mighty today. It’s called, ‘To The Rock Star Mom of a Child on the Autism Spectrum‘ written by Teresa Cooper. Here is a link to her blog too. 

This blog really touched me. We question everything. We live off of caffeine. I once had a lady comment about my coffee drinking at 4 in the afternoon. Ha ha. We live in a world of exhaustion and failure with very few successes.

Dear mom of a child with autism,

I know you might be tired — tired from lack of sleep, worry and frequent meltdowns. You drink so much coffee, your blood is 80 percent caffeine. No one seems to understand your child or what you go through every day together. Almost daily it seems someone looks expectantly at you to gauge your reaction, as if to say “Surely you can do a better job,” because they think your child is throwing a tantrum over a toy.

You question yourself and your mothering abilities. If you work outside the home still, you may question working. Daycare systems sometimes lack the training to properly care for a child with autism. You deal with a lack of consistency in your child’s services at school. Some of your coworkers totally understand your situation, and others judge it, so you never know where you stand. You think that if you talk about all these feelings, people will think poorly of you, so tuck away the feelings and try to hide them from the outside world.

I know how you feel, because I feel it too.

Here’s the thing, though. You may feel exhausted, rattled and even useless sometimes, but you are a rock star. No one else knows how to calm your child down like you do. You are the master of the paperwork, the queen of IEPs and the expert negotiator. When it comes to advocating for your child, you work tirelessly to campaign for fair treatment and understanding. You take care of all the big stuff, but you also kiss the boo-boos, play with dinosaurs and dolls, and learn about your child’s favorite television shows and books.

You make a mean macaroni and cheese. You can get pre-tied shoes on your kids’ feet in record time. You find treasures in the dollar bin and can turn almost anything into a reward. You can spout out “first, then” statements like no one’s business and know the difference between a tantrum and a meltdown. If anyone asks, you can tell them where to find what exists in the community for children with autism.

Your children love you, and they know you love them. They know because, in all the ways that count, you show them.

Finally, remember your successes. Today you may not have found victory, but don’t feel defeated yet. Rejoice in all the victories, big and small, you have achieved with your child already. Remember that somewhere in the future, you will find more triumphs.

You’re a beautiful mother with a gorgeous, magnificent, dazzling child who simply sees the world differently than anyone else. From one mom of a child with autism to another, I encourage you to keep at it. You’ve got this.

 

 

 

 

I Stopped Talking To Cooper A Long Time Ago

1913706_1195315080479549_3993140810917113887_nYesterday Cooper’s Crisis Intervention Social Worker came over for our weekly visit. I have so much to write about that and will at some point. He has given me more valuable advice than any single person, blog, doctor, etc., throughout this journey. He has helped me and my family.

And in turn I want to share that with you peeps. But, per the usual, I am days behind at work and working from home in a disgusting house with dirty dishes, dog hair and a pile of laundry that would scare my mother. So, I am going to share one tidbit that I have been thinking about all night.

This man, David, who is probably in his 50’s, has helped thousands of autistic children and adults over his career. He comes into your home and observes and talks and collaborates and gives ideas. WHAT A NOVEL IDEA!!! He gets to know the child. And the family.

Yesterday we were commenting on how vocal Cooper is becoming. He has even developed a strong, loud ‘yeah’ and makes the ‘H’ sound when beverages are hot. So huge.

From the beginning, he has told me to stop worrying about Cooper talking. He said whatever I do…whatever therapy we do…isn’t going to change this outcome. He’s either going to talk or he isn’t so stop worrying.

He told me a story about a completely nonverbal autistic 8 year old girl that he had previously worked with. He said she was having a particularly hard meltdown so he brought her outside to the porch to calm down. He was sitting with her and talking with her. He told me he talks to nonverbal children in a completely normal and natural manner. He was talking about his day….how hard it had been…how he was tired…and how he was having pizza for dinner. And then he asked her….’do you like pizza?’

Without looking up she said, clear as day, ‘Yes, I like pizza.’

This girl was completely nonverbal.

He asked her what she liked on her pizza?

And she said ‘pepperoni.’

David told me he never lost his cool. He never acted surprised. He just talked with her. And at one point he looked back into the house from the porch and the little girls mother was sobbing.

What a story. Was she cured? No. Did she start talking regularly? No. But she spoke.

His advice to me was NEVER stop talking to Cooper. Talk to him normally. Ask him questions. Pretend that he talking back. Do it so much that it starts to become a habit.

After he left I tried to talk to Cooper and it felt weird. It did not seem natural. Then my mommy guilt kicked in. Do I ignore him? Do I acknowledge him at all? I couldn’t remember.

So my goal is to start talking to my son again because in my heart I know I stopped a long time ago. Part of me blames the technology device that he is always using. But that is no excuse.

Happy Friday ya’ll.

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I Begged God To Fix Him Too

I work for a website called Next Avenue. Today, they shared a story titled, “What Will Happen to Adult Children with Autism?”

Check out the article. It highlights a new film called Life, Animated that sheds light on the realities that families like ours face.

I sobbed at my desk like a little baby. When the doctor says…Let me tell you about autism. And some of the kids never talk again.

I feel that in my heart. I feel it in my stomach. When the mom says:

“I’m just going to hold you so tight and love you so much that whatever is going on will go away.”

I’ve felt that desperation. I begged God to fix him. I begged my mom to fix him. I begged Cooper to fix himself.

It’s hard for me to even watch the video. But do it. Watch it. It’s really quite wonderful.