I Can Say He’s Severely Autistic. But No One Else Can

Yesterday, we had a meeting with Cooper’s social worker. I am aggressively going for more services or as the state calls it…emergency services. It took me precisely three strongly worded emails and two phone calls (One where I sounded a bit crazy) to get a social worker in my home to evaluate Cooper. Not too bad.

There is help out there. I need it. And I am demanding it.

As I prepared for the in-home evaluation I typed up a list of Cooper behaviors. Let me note that the county doesn’t require Cooper to be at the evaluation to be evaluated for help. Apparently, they can go off of old conversations and evaluations. That seems so odd to me.

So, because I wanted our worker to see Cooper in true-form, I scheduled the home-visit during the challenging hours when he boards the bus. It was strategic .I wanted the social worker to meet the real Cooper.

The whole evaluation process is a very surreal experience. Cooper is six. This is probably his 30th evaluation. Or assessment. Typically, they ask questions about his birth, development, IQ, services, etc. And in the past, typically as a mom I would sugar coat my answers. My child was fine. We were fine. This was going to be fine.

That’s how I looked at it. That was the old me. No more.

The assessments are rather uncomfortable and it is hard to convey everything in a 60 minute appointment. So, I wrote up my own notes. I felt like a traitor. I felt gross. And sad. And dirty. And negative. And like a bad mom. It wasn’t a good feeling.

Then the doubt kicked in. Maybe I was overreacting. Maybe Cooper wasn’t that aggressive. I immediately doubted myself. There were other parents that had it harder. Maybe it was me. I need to be more patient. More loving. The list goes on. More therapy. More, more, more.

Then I estimated what his care will cost out of pocket for the next year. The  number kept getting larger. I started to panic a little bit. What if I don’t get more help. What if his dad and I have to do this on our own. I will speak for myself and say that I will probably lose it.  As I added up all of the PCA care, door alarms, tracking device, supplements, fence, stroller, high chair, out-of-pocket therapies, etc. the number totaled $65,000.

Let me be clear that I am not rich. This number would come out of our pocket. Or we would live without need services and we would all suffer through.

I slept terribly the night before. I was so nervous.

The evaluation went exactly how I expected it to go. Cooper ran, rolled, hit his head, cried, screamed, fought his dad and I, kicked me in the legs and stomach. And boarded the bus.

His social worker said something that will stick with me for the rest of my life. I will never forget it.

‘Cooper is one of the more severe cases of autism I have seen and I don’t know how you are caring for him so well.’

That crushed me.

I can say those words. His dad can say those words. We are his parents. We love him and know him.

But I don’t ever want anyone else to say those words. That makes it real.

I was pretty angry at first. It felt like such a harsh thing to say. ‘Most severe cases.’ Sigh. I wanted to say to him that I am doing everything I can.  But he already knew that I guess.

I should have felt relieved. Right? Everything I was saying was true. The life I am living is hard. Someone saw it. My hard life was acknowledged. I was given a pat on the back.

But I felt even worse.

There was no fixing his ‘severe autism.’ Now we were talking about managing his care. That is heavy. And depressing.

I thought about everything I’d done over the past six years to help my son. It all felt like a waste. I was a failure. I’d done it all and my son was one of the most severe cases this man had ever seen.

At the end of the day when Cooper got off the bus I almost felt nervous. I had said all of these horrible things about him. He hits me. He screams. He’s nonverbal. He is so challenging. I felt like a traitor to my baby. I felt like he was going to know all the horrible things I had said.

I felt so guilty.

And then he bounded off the bus and ran up to me and hugged me. And immediately ate snow of my boots. And giggled.

Same kid. My kid. We were fine.

I still felt terrible though. I am in a waiting period where I wait to hear about our case. If I get denied I have to appeal it. Month after month I can appeal.

This excruciating waiting period is all too real for special needs parents. We are always waiting for something I tell ya. We wait for milestones. A diagnosis. Help. Hope. Equal rights. We wait. Always waiting.

I am scared about Cooper’s future. Knowing that it is more than I can handle is a lot of weight on my shoulders.

Here are the notes that I typed up for his social worker:

Cooper has reached the point in his development where he needs constant supervision. In a sense he is like a 6 month old 6 year old. He can’t communicate and really struggles to follow directions or be present in any situation. He is nonverbal, not potty trained and is severely autistic. He can no longer go to stores due to safety concerns. He needs a constant regimented schedule. He has started hitting and kicking his mom, brother, pets and peers. He has no ‘off’ switch or sense of fear. As his mother I am extremely worried about him wandering off or getting injured in our home. His father and I also feel exhausted and completely worn down by Cooper’s care. It is constant and getting to be more and more every week as new behaviors develop. We also do not feel comfortable sending him away for respite care. He is a 6 year old boy and would be so frightened.

Here is a list of his current behaviors and care that he is receiving from us.

Health and Safety

• Violent-Kicking, hitting, pushing. This is towards me specially but also our pets and his brother. My legs are covered in bruises. Also black eyes from head thrashing. His brother is often bruised and hurt.
• Oral issues: Putting objects in his mouth. Batteries, Legos, toys, tinsel, string, glass, hair, paper. We have found many objects in his stool. I have to be constantly sweeping his mouth for objects. Also watching the floor for small objects.
• Completely nonverbal.
• Self-injurious behavior-Head hitting and banging.
• Knocking over lamps.
• Putting objects in the outlets. Forcing cords into the outlets.
• Putting cords into his mouth. He was electrocuted from putting the end of a cord in his mouth.
• Climbing-Tables, couches, cabinets, fridge.
• Knives and scissors. He knows there purpose and will grab them himself.
• He can’t be left alone in a room for fear of hurting himself or others.
• Wanders out the front door/back door.
• Tears apart bedding, mattress, box spring. Coopers bed has to be on the floor now.
• Removes every object from 1 room and puts it in another room on a regular basis. Meaning, everything but heavy furniture goes from one room to another.
• Has to have his Kindle at all times. If there is an interruption in WiFi he will completely melt down and get violent. He has broken 5 devices in the past year.
• Does not understand the command ‘stop.’ He will run when asked to stop.
• Attracted to danger. Goes for the road, water, etc. He will run towards dangerous situations.
  • He does not know that he needs to wear a coat, shoes, hat, mittens
  • He can’t call out if missing-Completely nonverbal
• Unbuckles car seat while the car is moving.
• Attempts to open car doors, windows.
• Throws electronics into water like sinks, lakes, bathtubs.
• He won’t walk any distance. Meaning he won’t walk into a store and no longer fits into a baby size stroller. He can’t fit into a cart anymore. If I do put him in a cart he stands and throws things. Bringing him out in public is very challenging.
• I can no longer lift him. He is 60 lbs.
• Sleeping-Wakes up between 4 am and 5 am every day. At times he wakes up at 3:30 am.
• I have extreme PTSD worrying about his care and putting him on the bus in the AM (5 days a week). He hits, kicks and runs.
• Can’t have a typical babysitter.

Self-Care

• Not potty trained. Has severe constipation issues.
• Will poop and take off his diaper and smear it on the floor or walls. Has no concept of poop on his legs or leaking out.
• Can’t dress himself or feed himself. Can’t use silverware or use a cup. Throws food. Has severe food aversions. Only eats 5-10 foods.
• Medication Administration including Enemas.

Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook and subscribe to our newsletter.