Why I Gave Up Hope As An Autism Mom

I just changed my six year old’s diaper. It was messy. There was poop dripping down his leg. It was on his jeans. His socks. The poop got on my hand and the carpet.

And I almost started to cry.

I thought, ‘why me?’

And I let myself go down the rabbit hole of feelings that accompany raising a baby with special needs.

I let myself sink right into that shit.

The self pity. The ‘why me’s’. The ‘this isn’t fairs.’ The ‘I can’t do this for the rest of my life.’

I wondered what I did to deserve this.

And for one brief tiny second I let myself picture what this will be like when he is 12.  I pictured Cooper as a teenager. Then a man. Only for a second though.

I let the feelings last as long as it took to wrap the diaper in a Target bag and throw it on the front porch.

As I shut the door I caught a glimpse of the neighbor kids building a fort. Two boys. Both Cooper’s age. They waved and shouted hello.

And I breathed a sigh of exhaustion as Cooper non-verbally screamed at me to put another diaper on him.

And then, just like that, the feelings were gone. All of the sadness and depression and jealousy just left.

How you ask?

Well. Truth?

I gave up hoping for life to be different a long time ago. I gave up hoping that his autism would go away.

I just, gave up.

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God that sounds terrible. But, well, it’s the honest truth.

I had to give up. I couldn’t take the pressure of hoping.

The pressure of hoping he would talk. Of hoping he would be potty trained. Of hoping he would turn out normal. Of hoping that he would grow up and get married and have babies.

I had turned into this person that was always waiting for my kid to get better. I was waiting for words. For a conversation. For it to get easier. I was waiting for something that wasn’t going to happen.

And I was slowly going insane.

Hope. It’s a funny thing.

Never give up they say. Keep trying. Stay positive.

But, what if the hope is killing you.

I found out that Cooper’s autism was severe when he started Kindergarten.

Age 5 was a tough year for my ‘hope.’ My baby was so different. He was in special education. School wasn’t fun for us. It was IEP’s and stressful conversations. It was different than of a typical child.

I would spend days hoping that Cooper could go on a field trip. Or participate in a school play. I would see his classmates. I would see what it ‘should have been like.’

And then I stopped hoping. Just like that.

I realized to keep my sanity I had to give up hoping for things like play dates and friends and field trips. I had to let go of the hopes for school dances and sleepovers. And sports.

Giving up hope damn near killed me people. I won’t lie to you. I felt like a terrible mother.

But I couldn’t take the alternative any longer.

Do you know what it does to a mom when she is continuously asked by friends and family if her son is going to talk? Or use the toilet? Or learn to read? Or move away after High School?

Daily people were asking me what the future looked like. And they’d always say something like, ‘well, HOPEFULLY, he improves.’ ‘Hopefully he starts talking.’ ‘Hopefully he starts pooping in the toilet.’

I would stare at these people. And my I would be dying on the inside. I would always smile and say, ‘hopefully someday!’

And then one day I just stopped. I started saying ‘probably not.’ And now, I say, ‘no.’ Cooper will probably never talk. And he may never use the toilet.

And the relief I felt from those sentences. It was so freeing.

I realized I was keeping this false hope up to make everyone else feel better. I wanted to give them an answer that made them happy and comfortable. And it was at the price of my heart.

So, I stopped.

I gave up the hopes of my perfect, normal child.

And as soon as I did that I was able to accept life for what it was.

Giving up hope saved  me.

Cooper and I have beautiful moments. We laugh. We hug. I tickle Cooper. He blows raspberries on my back.  We go swimming. I lay with him before he falls asleep.I laugh at his trains. I sing him song after song. I jump with him on our trampoline.

And slowly, those things started to make me feel OK. Not quite so sad.

But I had to give up on the hope that we would have someday have a conversation. I had too. I just had too friends.

The hopeful waiting is gone now. I don’t spend nights thinking ‘what if’ anymore.

And that’s OK.

Now, if it happens, I can experience the joy in a brand new way.

Until then, I am loving the kid that I have. No more hoping for a different one.

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Photo Cred: Kacie K Photography

A Day In Cooper’s Life: Autism in Pictures

I am very vocal about the stress that goes hand and hand with being an autism parent. It’s a topic that isn’t always talked about. I want to change that.

Autism is hard. Unbelievably hard. I have post-traumatic stress from it.

For one it’s often extremely loud. For me it’s Cooper’s screeches mixed in with the constant sounds coming from his devices. And my little guy loves it LOUD. Really LOUD. I’ve tried covering the speakers with tape. He rips it off. I’ve tried headphones. He refuses to wear them.

So, I say, ‘turn that down buddy’ 547 times a day. It’s a lot. I remember saying at Cooper’s 3 year old check-up that technology is ruling my life. If I had only known the future. 

And for all you parent’s of typical kiddos…trust me when I say I am not happy about his technology obsession. It’s his life though.

Autism is often repetitive. Their actions. Their sounds. People with autism love routine.

Autism can be very messy. It can be destructive. It can even be dangerous.

Autism makes me feel so out of control that I want to scream.

His need for everything to be exactly the same in a changing, crazy world is almost impossible.

And I am the mom. The caregiver. I am here to keep him safe. Loved. And at times I don’t know how to do it all. And I often wonder at what cost.

Many times throughout the day I feel like I am walking on eggshells. I will do anything to avoid a meltdown.

Why?

Because the meltdowns are extreme. They are loud and can even be scary. Cooper will beat his head on a wall. Or even the floor. This is called self-injurious behavior and is common for nonverbal people. They can’t orally communicate what they are feeling on the inside so they hurt themselves on the outside.

It’s very, very hard to see. It makes me feel sick when I see him hurting himself. So, as you can imagine, I do anything to avoid it.

But what if I don’t always know the triggers? Or if the triggers change daily. It’s like I am playing a game with the highest stakes and I don’t know the rules. And my partner isn’t playing fair.

It’s trying to make every day the same as the day before. IF I do this the day will be fine. IF there are no hiccups. No late buses. IF we aren’t out of his favorite foods. Or favorite drinks. Or IF the WiFi isn’t out.

This is why I have 4 Kindles charging at all times. This is why technology rules our lives.

And this is why Cooper gets first dibs on what is playing on every television in the house. And why I give into his demands that every food MUST be in a bowl. And if we use a plate with sections then every section MUST have food in it.

This is why I always have milk and Capri Suns. And his snacks.

This all sounds crazy. Right? Like legit crazy. I know it does. It sounds unhealthy for me. It sounds like I am controlled by Autism.

Ding, Ding, Ding.

Autism controls every aspect of my life.

It controlled my marriage. It dictates how I parent. And my day. And my attitude. It controls my sleep.  It controls my job. And my plans. And every single thing I do in a day.

This is so much more then parenting. This is being an autism parent.

It makes me feel completely out of control.

Then add in raising a typical 3 year old along side this chaos.

Cooper’s life is on repeat every single day. We need it to be that way. He needs it to be that way.

I wanted to share with ya’ll what Cooper’s home days ‘look’ like. He has a routine. A routine that is so long and drawn out that one might not even notice that it is happening. I notice.

I am pretty sure my sweet boy has worn a path in my carpet.

He goes from his destroyed room where The Good Dinosaur is playing on his tv, to my room where he tears apart my bed, to his brother’s room where he tears apart the bed, to the couch, to the kitchen table with all of his ‘things’, to the basement stairs where he has a snack, to the toy room. And repeat. He has a Kindle with him at all times.

This will go on for a whole entire day. From 4:30 am to 8:30 at night. The only changes would be meal time, bath time or if we go outside or leave the house.

Here is Cooper’s life in pictures.

Imagine this on constant repeat. We try not to get in his way. But at times doors will have locks placed on them. Mostly for my sanity. I can’t clean every single room. I can’t make every single bed.

But, when I remove one of his stops I will notice that he gets extremely anxious.

This is Cooper’s room. He first tears his bed apart. He will spend 15 or so minutes doing this.

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Then he goes to my room and tears my bed apart. All the bedding, and any other ‘free’ to grab object gets placed into a pile in the corner of my room.

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Onto his brother’s room where he will actually dismantle the bed.

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Then to the living room where he will demand a show be put on the tv.  He sits on the couch. It doesn’t matter who is sitting there. He is Sheldon Cooper. This is his spot.

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Next stop is the kitchen table. He brings all of his items with him. Blankets, DVD’s, pictures. He always has a drink and snack and will go absolutely bonkers if we deny him food.  He arranges every item with care and precision. 

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He then stops by our technology station. 4 kindles. Always charging. He will typically switch out his Kindle for a different one on each pass through.

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In the basement he likes to destroy the toy room. I can always hear it happening. And I let it happen. This is an activity for him. He is playing. My wall is wrecked though. Sigh.

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Then up the stairs he comes and goes back to his room. This is our life. Every. Single. Day.

 

 

9 Big Mistakes Parents of Autistic Kids Can Avoid

I often think of my son’s autism as a journey. A journey with many, many steep mountains. And holes and cliffs. And of course it’s slippery.  The hills have jagged rocks and most of the time I feel like I am hanging on for dear life. There is no safety harness or map. I typically don’t know if I am even going in the right direction. And perhaps at times I am going backwards.

It’s just me against this damn mountain.  And it feels like there is more bad weather than good. I spend days doubting myself. The nights are worse.  I doubt my progress. I doubt if I will make it to the finish line. And even worse, most days I wonder if there even is a finish line.

Then something amazing will happen. A moment so magical it’s hard to even put it into words. The sun will come out. And I will get the strength to keep going. To keep fighting the fight. That is autism to me.

It’s a life of ups and downs.

The journey is long my friends and oh, so unique. My journey is different than yours.

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I would say that right now I am in the middle of my autism journey. I am through most of the hard stuff. I am past the diagnosis. I am involved in the school district. We have our IEP. I am getting county and state services. Fingers crossed when I say this but I think that maybe, just maybe, I am past the survival part. The fight or flight part.

I am three years into a diagnosis. I am settling in. My house is Cooper proof. Everyone in my life knows I have an autistic son. I am headed towards acceptance.

There are times when I can almost breathe. I joined a gym. I feel like I am becoming human again. I am no longer invisible. I blog about my journey. I am helping other parents. And I love that part.

These are all great things.

In saying all that I often think about my journey. And the mistakes I made.

Maybe ‘mistakes’ is too harsh. But I surely stumbled a lot. And Cooper’s dad and I did it mostly by ourselves for the first 5 years. And in doing that I feel like I have learned so much about myself.

Here are the 9 things that tripped me up on my Autism journey:

I waited.

I waited for Cooper to get older. I waited for him to be 1. And then 2. And then 3.  I waited because no one believed me at his young age. But I knew. So, I waited for resources. I waited for someone to tell me what to do. I waited to get a diagnosis. I waited to get help from the county. I waited to get services. I kept thinking if I waited he would eventually snap out of it. Or improve. I truly believed that in my heart. And I felt so much guilt. I felt that by acknowledging Autism as a possibility I was failing my son. And that I had failed as a mom. Now I know that is ridiculous. Get help. The sooner you get intervention the better.

I listened to other people.

All of the people in your life have opinions. And most of them come from a good, loving place. They will tell you stories. They will observe your child and tell you what they think. Some good and some bad. I want to say that your neighbor is not a doctor. And your aunt is not a psychologist. They cannot diagnosis autism. Or say a child is NOT autistic. I’ve heard it all though.  There is a saying that goes, ‘We all eat lies when our heart is hungry.” I think about that a lot. I was so desperate for my son NOT to have autism that I believed everything that people told me. I was told that boys are late bloomers. I was told that boys are late talkers. I was told that everybody eventually talks. I listened to every story that was told to me, emailed to me, or shared on social media. Trust your gut. I learned to do that and it changed my life. When it comes to Cooper my instinct is always right.

I tried and put way too much time and money into ‘gimmicks.’

Child cured from autism when parents removed gluten, casein and dairy! Or, nonverbal child starts speaking weeks after starting Fish Oil Supplements.  You will hear about these miracle cures. I tried ALL OF IT my friends. At different times I believed my son was autistic because his tummy was messed up. I thought if I fixed that I could fix him. I had a crisis social worker tell me that if going gluten free cures your child’s autism then they weren’t autistic to start out with. I’ve held onto that. But oh my good lord the money I spent. The time I spent researching. Buying books. And the time I spent trying to get my child with severe food aversions to eat new, creative, gluten free foods. I think I hid the fish oil in every type of juice. These miracle cures are really, really frustrating because they most likely won’t work for your kiddo. And you will feel like a failure all over again. They bring false hope. To this day I shut down when someone tells me about a friends sisters son that was cured. False hope is brutal.  I even tried bringing Cooper to a healer to have his Chakras realigned. Not bashing healers here (Or parents that go gluten free)…I am laughing at myself because my son refuses to sit or be touched by strangers. I spent $150 on a healer that’s sole purpose is to touch the child. I failed.

I felt guilty for using Autism resources.

In the state of Minnesota every child with the diagnosis of Autism qualifies for Medical Assistance. If the parent’s make too much money then they qualify for Medical Assistance-TEFRA where they pay a parental fee. Full-blown Autism therapies can cost upwards of $200,000 a year. Yes, you read that right. And, furthermore, most autism programs will only accept a child if they are on Medical Assistance. Like Fraser or the Minnesota Autism Center. I can’t even tell you the guilt I felt for having Cooper on medical Assistance. I felt like I was a user of the system. I felt dirty. I felt poor. I felt embarrassed. Cooper’s dad and I wanted to keep it a secret. This is absolutely ridiculous. Our kiddos need help. The help is insanely expensive. TAKE THE HELP. We waited to get it. That was silly. We are still paying for therapies from 3 years ago. And don’t feel guilty. The money is out there to help parents like us. Use it my friends. Keep your sanity.

I was afraid of the village.

When your child is diagnosed with Autism things start to happen. It feels like something huge is being set into motion and your are slowly losing control. The school district gets notified. The county gets notified. Your child starts having more therapies. More doctors. You add in more and more people to your inner circle. Many of the appointments are in your own home. It feels weird. You have to repeat the story of your vaginal birth to complete strangers.  It feels uncomfortable. I fought getting a social worker until a year ago because I didn’t want to let the county into my life. It made me really uncomfortable. That was so silly. Once I did that a world of resources opened up to us. Grants, waivers, respite, communication devices, free diapers to name a few. I would have never known about these things if I didn’t open myself up to the village. I counted today in my head that Cooper has 25 different people that have a direct impact on him and his care. That’s ridiculous. But it’s also saved his life. Let the village in my friends. It will feel weird at first. Almost like you are losing control. But do it. Build the village that will surround, protect and advocate for your child.

I didn’t speak up.

This one is tough and I think it comes with time. At some point in your journey your skin will get incredibly thick. You will feel or see something that doesn’t seem right. You learn to ask lots of questions. You learn to force communication. You will learn to speak up. For example, not every teacher or therapist or doctor will be the right fit for your child. This was a hard one for me to accept.  I remember a time when Cooper was receiving private speech therapy. I loved Cooper’s therapist.  I started a friendship with her. But in saying that, she was not the right fit for my autistic child. Not every person will bond with you or your child. Be loud about this. Ask for different teachers if needed. Make noise. Find the right people.  I also remember another time when I had to demand an x-ray for my son’s stomach. The doctor said he was fine during the appointment. I walked out. Then I walked back in and said no. I want an x-ray. And I got one. And I was right. His stomach was terribly messed up. Speaking up is really hard and uncomfortable. Become a mama or a daddy bear. Fight for what is right for your kid.

I didn’t ask for help.

‘I never knew motherhood was going to be so hard for you.’ I read that somewhere. Or maybe I heard it from a friend, I can’t remember, it’s been too long. Anyhow, it’s mean and it makes me laugh. Raising Cooper as a newborn and toddler was so unbelievably hard. I still have PTSD from it. I felt the pressure to do it all by myself. I was his mother. His dad and I didn’t need any help. I should’ve asked for more help. It’s out there friends. Reach for it.

I isolated myself.

I pulled away from friends and family who had kids around cooper’s age. I severed friendships. I skipped family events. I couldn’t bring myself to be around them. It physically hurt me to see babies the same age. Hearing about their milestones made me feel sick. And for others to ask question about Cooper. I often felt like I should lie. If I didn’t it would just prompt weird looks or the ‘lies.’ I couldn’t figure out why my baby crying all the time. The other parents seemed so relaxed. Why was I covered in sweat and chasing my child?  At times I still avoid his school. Seeing his peers is more than I can handle. This is silly and I am working through it. Friends and family should be the people we turn too when we are in crisis. But I did not. And I have some pretty big regrets around this one. Isolation makes everything worse.

I beat myself up.

I put way too much pressure on myself friends. I should’ve grieved but I thought by grieving I was giving up on my son. Or being a bad mom. All false. I also would blame myself. I must have done something wrong. I failed. Or at times I felt and still feel like I am not doing enough. There is no instruction manual that comes with being an autism parent. You will figure this out on your own just like I did. And you will do amazing. And eventually, like me, you will help others. It takes time though. Get through the first part of the journey. The big, steep mountains that feel almost impossible to climb. And don’t ever beat yourself up for feeling a certain way. You are doing the best that you can for your child all while being a parent with very real human emotions. Give yourself time. You’ll get through this. And I can tell you that the bottom of the mountain feels pretty good so far.

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Acceptance: A Video Blog

Sharing on a tough topic this morning. I’ve been scared to share this video blog because it’s very real and raw but I know that other parents need to hear these words. It’s OK to be sad. It’s OK to admit that it’s hard. And it’s OK to grieve all the things you won’t do as a special needs parent. You are human.

Sensory Balloons

Sawyer and I spent the morning making sensory balloons for Cooper. HE LOVES THEM SO MUCH.

I totally recommend making these if you have a kiddo that likes to hold objects. They are super squishy. Cooper will carry these around until I eventually have to throw them in the garbage and make new ones.

And making them really entertained Sawyer too. Of course I let him make a huge mess because it bought me 20 minutes to write this blog. Winning.

First, cut off a bottle. I used an old vinegar bottle but any kind will do. Attach the balloon to the end and fill with floor.

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I recommend putting a little water into the balloon before you tie it shut. It makes the flour more squishy.

 

And then I let Sawyer play.

 

 

 

 

Autism and Isolation

So many parents of special needs kids talk about the isolation they feel. I know I talk about it often.

It started early…around 9 months old for Cooper.

It’s gotten worse.

I have a NT super active three-year old, almost four-year old. Sawyer is by far my more challenging child. He is extremely busy. Even that is an understatement. He likes to be active and building and running and jumping. I am very much a boy mom so this works. I prefer messy outdoor and physical activities. We work well together.

I also have a severely autistic 6-year-old who refuses to play with toys, do any activity or even walk any sort of distance.

This is a challenge.

He is also a runner. He doesn’t understand safety or danger. So, as a result, he needs eyes on him constantly. Meaning he needs 1 person dedicated to him at all times. And, if we are at a pool or lake I prefer two people watching him. Sounds dramatic. It’s not. Cooper is extremely allusive. He wanders silently as well. There have been many times where I have looked away for a second and lost him.

I thought that maybe these challenges would get easier as Cooper got older. I was wrong. I can no longer carry him any distance. He wants to be pushed in a stroller and handicap strollers are well over $1000 and not covered under insurance. If we reach the point where he won’t walk anymore he drops to the ground like a dead fish. He turns to jello. A kicking, screaming pile of jello. It’s impressive. And gets us SO MANY stares from fellow people.

He is also so loud. And he can’t sit still. We haven’t been to a restaurant with Cooper since he was 12 months old.

There are other smaller challenges too. Places we visit must have WiFi. MUST is an understatement. There must be enclosed areas. I need to always have snacks for him. His certain sippy cup. Milk. I need to be able to change his diaper. He is 6 and 60 lbs. Doing this on the bathroom floor is disgusting.

It’s like bringing a 60 pound newborn out in the world. A newborn that can run and doesn’t understand safety.

Preparations to leave the house are extensive. Typically I am exhausted by the time we leave and the anxiety of what is to come makes me sick to my stomach.

So.

We are home-bound most of the time. I feel isolated and claustrophobic in my own house. I dread the weekends most of the time.

I know that on both weekend mornings Cooper will wake up at 4:30 am. I know we will have a whole day before my friends and family wake up.

I know the days are on repeat. They never change.

Except now I have a super busy social toddler that doesn’t understand why we can’t leave the house. And saying, ‘because your brother is autistic’ only gets me so far.

I can see the resentment building already between this brotherhood. And deep down I get it.

We are trapped. And I see the future. I will set Sawyer up with activities and play dates. He will continue to socialize and grow. And I fear that I am going to miss it all. I will be here. In my home. With Cooper. Alone.

The summers are better.

In the summer we are able to go to parks. Some parks that is. Small, local ones. Not big, fancy parks. I can’t keep my eyes on both boys if there are too many play structures. I have to chase Cooper and hope Sawyer will follow behind.

The winters are terrible. Absolutely terrible.

Today in Minnesota it is -2. So freaking gross. We are on a 7 days streak of below zero weather. It’s been tough and I am really feeling it.

Cooper hates to be cold like most of us do. He also doesn’t understand snow or what to do with it.

So, we are home-bound for 4 months every single year.

If Cooper wasn’t autistic we would go to the Children’s Museum and malls. We would go on play dates. But we can’t. I’ve accepted that we can’t. But holy mother raising a NT toddler with a special needs brother is giving me a run for my money.

Cooper doesn’t get bored. He likes his house and his Kindle. He needs something to drink and eat and to have his diaper changed. That is it. He is content.

And the rest of us are going absolutely stir crazy.

Yesterday Sawyer and I dyed Easter Eggs. We made a homemade hat. We played with Play-dough. He gave his toys a bath. It was long. We survived though.

It started over today at 5:05 am. Sawyer and I made a homemade car and sensory balloons for Cooper.

I’ve noticed that this isolation is causing Sawyer to be extremely clingy with me. He has to always be touching me. It’s a lot.

I am taking today off from the boys. I need it. I need some respite as they call it. I just need a break.

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The Lens of Special Education

Does public education for your special needs kiddo make anyone else feel extremely anxious and nervous? Like it’s a game where you don’t entirely know the rules. And you think it’s going okay. And then someone will ask you what your nonverbal son is learning and you get a blank look on your face?

Or maybe you ask a question to the teacher and you get a really odd response. Or no response.

Or maybe you just feel like something is off but you can’t put your finger on it.

If you are me you ‘think’ you are doing the right things. You communicate daily with his teacher. You ask questions. You investigate. But yet, despite all that, deep down, it feels like this isn’t the best situation for your child.

What do you do?

This is the worst feeling in the world. It’s so awful. I feel really trapped.

And then there is the emotional side. Seeing all of the fun activities the ‘typical’ kids do. Field trips. Movies. Activities. These are all things my child can’t do.

It hurts so much that often I have to completely block it out.

I also feel like I have to be constantly choosing my battles. I am unhappy about so much and which ‘parts’ do I choose to make a stink about.

And, oh sweet lord, the energy exerted just maintaining your child’s basic rights. No one prepared me for that.

I feel like I am forced to be a watchdog. To seek out issues. To constantly be monitoring for problems. It’s gross. And not me. And I hate it.

I feel like as Cooper’s mom I have to ask a dozen more questions than other parents. I have to ask about super basic things like recess, lunch, using the toilet, etc. Things that other parents wouldn’t even think to ask.

And then there is the fact that I know my baby can’t be in a typical classroom. I know that in my heart. Trust me. I am not blind. But I feel like he is secluded. Or excluded.

Or maybe your IEP meetings have always went fantastic. Like ours. Then you find out that your kids IEP isn’t actually that great. It’s light. It’s fluffy.

Or you feel tricked. A year or so ago I asked for more resources around toilet training and was given 5 or so reasons why it wasn’t the best time. When I pushed back I was simply told, ‘it’s not in his IEP.’

I felt like I’d been punched in the stomach. I didn’t know it had to be in the IEP. No one mentioned it.

Every human uses the damn toilet. I wasn’t asking for anything crazy. It’s a damn basic right.

Cooper is 6. He is a little boy. He is not a piece of paper. He is an actual human just like every other kid at that damn school.

I feel like we are at a crossroads with public education. And in Minnesota there are very few options. I CANNOT home school. Nope. Nope. Nope. I would not be best for Cooper. That is a fact. I also work full-time. And if my little pumpkin continues to need a new iPad every 3 months then mama has to work.

Work, work, work.

I am looking into some full-time ABA programs. They are all full. I’ve also been told that Cooper is not a good candidate for ABA because he does not like 1:1 teaching. He looks to be in a group of peers.

So, is that it? Do I just make the best out of what we are receiving?

As a parent you never know. Am I doing the right thing? Do I fight harder? When do I say, ENOUGH.

Yesterday I picked Coop’s up from school and I was given a glum, honest report. He isn’t doing well transitioning back after break. He is hitting, kicking. He is struggling.

I spent the whole entire night thinking about it.

And after the beating of the kiddo in Chicago I actually considered running away and starting a new life with my family in some remote place.

Public education is great. Special education is great. Those teachers are saints. But….what if Cooper needs more.

I want to get to the point in his life or education where I can say…’we made it.’ And I want to take a deep breath and relax and know that Cooper is receiving the best care and that I finally made all the right decisions.

I want to find our normal. And not feel like I am trying to find the ‘bad’ all the time.

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