Update Letter to the School

Rather than write a new post, I am sharing the update letter I sent to the school staff.

As most of you know, Gabriel had an MRI and 24 hour EEG on Tuesday and Wednesday. He had a couple minor complications, making the procedures more challenging for him. We spent two full days in the PICU.
On Tuesday afternoon I received part of Gabriel's diagnosis from the MRI. While I was speaking to the PICU dr, the neurosurgeon happened to walk into the consultation room. It was good timing.
Gabriel has a brain malformation called Chiari type 1. Chiari is when the cerebellum (cerebellum tonsils) descends into the space where the spinal cord enters the spine. This causes pressure on the brainstem, cerebellum, or spinal cord.
Many people with Chiari type 1 don't show symptoms. However, Gabriel is showing active symptoms. These symptoms include: headaches, leg pain, arm weakness, hypotonia, poor sleeping, choking/gagging, balance issues, fine motor problems, aggression, and ear pain. The neurosurgeon told me that he thinks Gabriel is a candidate for surgery.
We have an appointment with the neurologist on the 24th to discuss all the results. We were also referred to the neurosurgeon on the 28th to discuss decompression surgery. The surgery involves removing a portion of the skull to relieve the pressure and might also include removal of the top vertebrae. The neurosurgeon also discussed shrinking the cerebellum with me.
Please feel free to ask any questions or contact us with any comments. This might be an issue that would be appropriate to share with staff so everyone can understand Gabriel. (I can't locate his OT's email to include her.) We would appreciate any school work sent home for him as we continue to work on his medical and education needs. We are grateful for your willingness to help Gabriel succeed.

Lines, Lines, Everywhere Lines

When the boys were younger, they would line up toys. Everywhere they went there lines of shoes, cars, trains, pens, and more. If the cars and trains were lined up, it didn't seem so bad as a parent.  

Trains are meant to line up.  You piece them together and push them on tracks. It seems logical and follows typical play. Then cars would line up and it wasn't a huge alert because cars line up in traffic jams all the time. 

Until my child continued to line up the little cars. Then it starts to click in this autism parents head.  You realize that the child is only lining the cars up, they aren't parking the cars in a parking lot or racing the cars. The cars are forming long kind all over the house.  At a certain point, you get it.  That's not a typical way to play with a bunch of cars. 

As a parent of two puzzle pieces, when my NT princess lined up all of the kids shoes in the front hallway, I was filled with a moment of fear.  I hear about regressive autism often. The child appeared to develop on track and then stopped abruptly.   Poor Lane had to sit down and have a conversation with me in an effort to calm my fears. It's fascinating how such a small thing like lining items can now elicit fear.  

(The shoes were in perfect lines prior to taking the photo)

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.

Sweet Seven Year Old

Alex is developing empathy and generosity. It hasn't been an automatic, innate quality for him or at least he hasn't shown it over the years. It's just who he is, whether it was due to his disability that makes empathy more difficult to present itself or simply his personality, I don't know. Or maybe he is maturing, part of his uneven development, is shining through in a positive way.
Yesterday Alex was honored for his good grades at school at Shorthorn Roundup. Afterward he asked Andrew to take him to a store to get flowers and a gift complete with a gift bag to surprise me. WOW! It isn't my birthday or a holiday. He wanted to get something because he loves me and he's grateful for everything I do. He wanted to make me happy.
I was truly surprised and loved that he showered me with affection. I was told that the store employees were impressed that he wanted to buy things for his mom.
I am staring at my flowers today, using lotion, and excited to use sugar body scrub later. I look forward to watching this part of Alex develop as he continues to grow.

Seizing the Day

After a Sunday evening full of anxiety, Gabriel did well getting ready for school. Surprisingly well.
When we got to scho, There are several different types of seizures. Both boys have had febrile seizures and watching them seize was heart wrenching.