Quit Robbing Us

Autism is a thief. It has stolen many things from my chikdren, from our family, and from the two of us, the parents. I'm writing this as a mother and I don't know my husbands view on this part of autism.  However, I firmly believe that autism is a stone cold thief and no one is exempt from its possible scrutiny 

Autism has stolen our finances. We have paid for therapy in the form of behavior, occupational, speech, aquatic, and hippo (horses). We have paid for expensive diet choices. We have paid for therapeutic devices.  We have paid for babysitters when our children with autism can't handle a situation. We have paid thousands of dollars for school advocates. We pay for medication, essential oils, vitamins, and more.

Autism robs us of time. I've spent countless hours researching new therapies, scientific studies, media reports, schools, and blogs. I don't want to miss out on something that might help my sons.  I've spent hours upon hours talking to insurance costumer representatives to understand our benefits and to resubmit incorrect claims. I can't tell you how many specialists, doctors and therapists offices I've been to with my children. I have to call for medication, pick it up, and drop off prescriptions.

Autism robs us of a sleep. I can't remember what a full night of sleep is like any more. Children with autism tend to have sleep issues. One son can't fall asleep before 10:30 pm, no matter what we do with him. The other son does not sleep through the night. Ever. We are constantly woken up by his sweet voice or heavy foot steps.
Autism robs us of lost moments. Restaurants can have strong smells. Events can be too loud. Parks can be too crowded. Waiting periods are too long. All of these things cause meltdowns and we have to leave at a moments notice. We miss out on a lot because autism robs my sons of coping skills.

Autism has robbed us of spontaneity. Children with autism need routine and consistency. We have to plan and have three backup plans in our head at all times. If we don't stick to a routine, we pay a tough price. We have charts and "if/then" boards. We know what PECS is and we use it.

Autism robs us of peace. My normally gentle, sweet souled child has become aggressive and impulsive. He hits, bites, pulls hair, and pinches. He doesn't have the ability to stop himself yet.

Autism robs us of bits of sanity and connections. We constantly question our parenting and scrutinize every facet of our sons lives. As parents, we don't always agree with methods of parenting or therapy. We have to divide and conquer and miss out on family time together because one of the puzzle pieces can't handle a situation. We hear screaming every day because a child is overwhelmed by their environment. Birthday parties are a huge challenge due to the enormous energy of all the children. It is difficult to know if the person inviting us will understand if we have to leave. Will it cause an awkward moment or ruin a friendship? Are we not included because our sons have a disability? I am anxious about having parties and guests because I have to explain what could happen and make sure those guests are able to cope and understand that their behavior has everything to do with a struggling child and not anything else. We have care giver burnout.

Autism robs us of every day conversations. If someone doesn't know my sons in person, I am often asked, "are they verbal?" Somehow if they are verbal, that makes it better I suppose. It doesn't though. I don't know what happens during the boys typical day. I can't have a conversation unless it centers around their interests. We don't know who their friends are at school. We don't know what they are reading at school.

Please autism, give us a break. Quite robbing us of these little bits of normalcy that I am still craving.