Holiday Montage

The Holidays have been fast approaching and our lives have been direct reflections of that.

First we started off the holiday by visiting Santa and taking a horse-drawn carriage ride through Rockland.

Then we took an entire evening trying to get just the right photo for our Christmas card.
















Corbin put on a personal holiday concert for his grandparents.

















We enjoyed the boys' Holiday Fair at their school.


A day was spent at "Grammie & Grandpa On The Hill" making cookies with our cousins.















And another day exchanging presents, eating yummy food, and decorating snowmen cakes with even more family.

[I’m not sorry.]

 

 

I was told recently that I can be selfish because I act as if I don't realize there is anyone but Brian and I. That I act as if we are in our own little world.

 

My. Child. Has. Autism.

I don't think this is something I'm going to apologize for.

 

Let's look at my life.

Every interaction I have with my child takes ten times longer than a normal interaction because I need to wait for him to actually look at me. I need to repeat the question up to fifteen times before I get a correct answer and not just a repetition of whatever I have asked.

Having a child like Brian adds tons of extra housework. Every day I'm cleaning up some kind of mess I probably wouldn't have if my five-year-old didn't have autism. I have to clean up poop smeared on the bathroom wall, a flooded bathroom floor, or chewed-up, spit-out crayons in the corner of the playroom. Brian generally gets a bath at least twice a day, depending on what kind of mischief he has decided to get into.

My dishes are usually doubled, because I work hard to follow a special diet for my child. Most meals are made from scratch and I sometimes have to make double dishes because not everyone in my family is a gluten-free/casein-free/phenol-limited fan. I also have to make homemade bread at least once a week. If Brian's teacher is planning a "cooking" activity, I need to make sure I have a similar substitution so Brian can participate.

I can't go and do the things I'd like to do because Brian doesn't have the attention span to attend. Things like basketball games, plays, going to the museum, or a movie theater. Not that we don't attempt those things but I generally have to leave early and walk around in the lobby or outside surroundings to let Brian get movement and have no noise restrictions. It's not fun for me and it's not a wonder that I sometimes just opt out of those things and stay home with Brian.

Any new situation requires planning. We can't just jump into things, even things as simple as adding snow pants to our outside apparel. That requires me making social stories or picture schedules, using those implementations, waiting out tantrums, and practice, practice, practice.

My day requires dealing with at least one tantrum every day. It requires doing oral-motor exercises every day. Sitting through the same movie day after day. Learning how to block out that high-pitched happy squeal that accompanies Brian wherever he goes. Searching the entire playroom for the correct caboose that goes with that certain engine. Sitting at a table with a very unwilling child to work on letters, numbers, colors, shapes, and whatever else we need to work on, because school and the normal learning through play method doesn't work for him. It requires learning different joint-compression, musgatova methods, and brain gym so I can help him calm his body when needed. I have to learn about adaptive equipment and choose what is the best for him. I've had to learn a whole new way of thinking and a whole new vocabulary just to keep up with the specialists in the field. On a regular basis, I have to find new ways to trick my child into taking vitamins and supplements that I am giving a try to see if they help my baby. I have binders I keep that are four-six inches thick of not only every single evaluation and progress note Brian has ever had but every research paper that I have found that I find some truth in.

Almost every day Brian breaks out in some new kind of rash or his bowel movements change color or consistency. Fun, right? That leads to me needing to figure out what he ate new or was in contact with that caused a reaction. It leads to me having to do a little bit more research and maybe tweaking his diet one more time.

Brian doesn't sleep through the night. I am sometimes up with him three-five different times a night. I often feel like I haven't slept in the seven years I've been a Mom. I'm exhausted.

My schedule has so many added things to it that "typical" parents don't have. Speech appointments, occupational therapy appointments, naturopaths, chiropractors, therapeutic horseback riding, evaluations, case management meetings and pediatricians appointments, sedated dentistry appointments, allergy testing, eye check-ups, hearing evaluations, and lab visits. I have to stay at the school for an extra hour or two at least once a week to answer any questions they have about Brian and to show them the appropriate way to approach some issues, because I am the only one that knows him that well.

I have twenty-four hours a day, just like every other person. I go to school full-time. I have another child that I certainly do not ignore! Is there any wonder that I don't have any extra time? I wonder if ANY Mom, let alone a Mom with a child with special-needs, ever thinks they have enough time to give to everyone.

None of that even includes the emotional part of being a mother to a child with autism.

You don't understand the feelings involved of having a child developing typically, saying words, interacting, so happy all the time suddenly regress to a child who didn't even notice when you came home from work. Unless you've lived it you can't understand the importance of waiting for your child to call you "Mama" and having to wait until he was four years old to do so. You don't have to ignore the stares or have to educate complete strangers why your child, who looks like a big boy, just threw a toddler-sized tantrum in the middle of the grocery store. Or how just the simple touch of his hand to your cheek to show his affection can make your heart jump in your chest.

I do all these things with determination and hope that I am somehow shaping a better life for my child. I have spent so much time these past three years of diagnosis with tears in my eyes. Do you understand that these things are not an option for me? Do you understand that there is no choice in my mind? If there is ANYTHING I can do to help him grow and to perhaps secure the fact that he'll be able to hold down a job, even if it is bagging groceries, I will do it. Everything I do revolves around helping my child reach the quality of life that every individual has a right to. There are plenty of days that I question everything I do, especially when I haven't seen the progress that I want to see, but hope and love keeps me going.

Would I consider what I do, selfish? Never. I have given everything I have to my two boys and I don't regret a second of it. The only thing I'm going to say sorry to is that you don't understand why I do this.

 

{P.S. I have written over 1200 words in this blog and I know other Moms in my position would agree that I really only touched on the tip of the iceberg in all that we do!}

Emotional Intelligence

Today my five-year-old son with autism caught me crying. If Corbin had caught me I knew I would get a hug and a meaningful talk as that kid is so tuned in to my emotions it's scary.

Wasn't expecting much from Brian catching me.

I quickly dried my tears and said, "Hi Brian."

He was looking at me so intently and then appropriately used his new phrase that he's been repeating for a month or so now.

He put one hand on my shoulder and said, "You okay?"

Preventing Harmful Restraint and Seclusion in Schools Act

On December 9th, the Preventing Harmful Restraint and Seclusion in Schools Act, HR 4247 was introduced to legislation. A companion bill was also introduced in the Senate (S 2860).

It's sad to know that such an act doesn't already exist and that one is needed. But it is. Disabled children are being mistreated every day in schools.

This act is the product of a Government Accountability Office report on restraints and seclusions released last spring. The report found hundreds of cases of alleged abuse and death related to the use of three methods on school children during the past two decades. The majority of these cases involved students with disabilities. Still, this report surely doesn't cover the full extent of the problem. Many cases often go unreported and some states don't even keep track of such incidents.

The proposed legislation includes:

• Establish important minimum federal safety standards in schools, similar to the protections already in place in hospitals and other non-medical community based facilities;
• Limit physical restraint and locked seclusion, allowing these interventions only when there is imminent danger of injury, and only when imposed by trained staff;
• Outlaw mechanical restraints, such as strapping kids to chairs, and prohibit restraints that restrict breathing;
• Require schools to notify parents after incidents when restraint or seclusion was used;
• Call on states, within two years of enactment, to establish their own policies, procedures, monitoring and enforcement systems to meet these minimum standards;
• Encourage states to provide support and training to better protect students and prevent the need for emergency behavioral interventions; and
• Increase transparency, oversight and enforcement tools to prevent future abuse.

Please take just a few minutes of your day to ask your elected officials to cosponsor this bill! So many families and children will thank you!

Dreaded Dinner Time

I don't know if it's just my imagination but I feel as if Brian's self-limiting himself more and more when it comes to food lately. This has always been an issue, as it is with most individuals on the spectrum, but it's actually been a few days now that he hasn't eaten anything at dinner.
Sure he's eating breakfast- though the only things he eats at that meal is a banana, waffles, scrambled eggs (in a perfect circle only), or Erewhon's rice cereal.
He eats lunch and snacks everyday- again has to be a PB&J sandwich, mac n cheese, a banana, raisins, carrots, and/or a fruit leather.
So there isn't much variation in either meal.
Dinner time I try to only make one meal. You always hear to do that as a parent- I'm not a short-order cook and I don't really want to be treated like one. It's a good exposure to your child to eat/try different foods. I'm not sure though if I'm correct in following this rule with Brian, a child with autism.
Though I only make one meal I do sometimes make two variations of it. For instance last night we grilled up kielbasa, carrots, and potatoes. Josh & I eat it all mixed up together- but I separate it for the boys. Brian would only eat his kielbasa, even though he loves carrots! After I took some raw carrots out, he ate those, just wouldn't eat the ones that had been grilled a little.
Tonight we had pasta. I'm not a huge fan of GF pasta so I made two pastas, but the same topping- broccoli, cheese, chicken brothe, and a little lemon juice. I had a feeling Brian wouldn't touch the broccoli but he likes pasta, sometimes. He wouldnt' touch a thing.
I tried the old trick of "You eat one noodle you get one cracker" which has worked on occasion. Not tonight.
I tried making the pasta be a train, rarely works, but not tonight.
We took the noodles out and counted them and said their colors (they were tri-color noodles). I did this for close to half an hour. Then we started licking pieces. "Just put it on your tongue, like this". He did that. "Now let's bite it like a bear". Not at first, but after a few attempts, he ate one noodle!
We took the broccoli out and, as weird as this sounds, I got him to eat one little nibble by holding the stalk of the broccoli in between my teeth and he bit the other end. The things you will do for your children.
So for dinner my five-year-old son ate one noodle and one bite of broccoli. I don't know how he maintains his high energy level sometimes. Yet at the same time I am extremely proud and ecstatic over those two little morsels.

I Believe!

Today I told the boys we were going to visit Santa at his workshop and then go see some horses to go for a carriage ride. For all those in the area, every Saturday in December they are giving free horse-drawn carriage rides in the afternoon at Key Bank. Anyways, I stressed the horse part to Brian as in years past Santa hasn't been a very big motivator.
When it was time to get dressed to brave the outdoors I reminded Brian we were going to see horses. The boys got their gear on and I look down at Brian's feet to see he had dug out his horse-riding boots from the back of the closet. I laughed at how observant he can be when he wants to be but also was a bit worried about how he might react when we didn't go to Freedom Riders- the only place he ever wears his boots to.

When we arrived at the Workshop Corbin went right up to Santa and was delighted to hear Santa say, "I bet you want Legos!" and Corbin had just, minutes before, delivered his letter to the north pole that asked for that very thing! Brian wasn't really paying any attention and Santa and Mrs. Claus kept calling his name. I told them that Brian has autism and doesn't always respond to his name. Santa nodded his head as if he understood and stopped calling Brian's name and instead said, "Hey can I get a high five?"- another thing I can't believe Santa knew. High fives are never denied by Brian. He's practically OCD about "high fives".
Brian stopped his circle-walking and went over and gave Santa a high-five. While doing so Brian noticed Santa's black boots that very much reminded him of his horse boots. He stuck his own foot and placed it next to Santa's and said, "Boots!" He kept his foot there for a little while looking at his boot next to Santa, then ran off laughing and walking in circles again.

A few minutes later Santa asked him if he wanted to have his picture taken and Brian walked over and posed for a picture.


That is why I still believe in Santa!

(Oh and the carriage ride was a success after- either Freedom Riders didn't cross his mind or he decided our plans were just as fun)

Just Put It Into Gear...

As it was quite chilly this morning I decided to drive our van down to the bus stop instead of walking down. Once I was parked I allowed Brian to unbuckle himself and climb into the front to sit on my lap. He was excited as he doesn't usually get that view and started immediately yanking the wheel back and forth. I laughed, and looked back at Corbin and said, "Brian is going to drive us to school." No sooner that the words escaped my lips, my van lurched forward.
I quickly turn back to Brian to see his hand on the shifter and his little foot stretching down so the tip of his shoe is just barely pushing the gas pedal. My reflexes luckily were on and I quickly braked and put the van back into park.
This is not the first time my little man has surprised me with his knowledge of how things work. Like the time he took apart a whole shelf in a short period of time that really required a screwdriver to remove the screws (still wondering how he did that one). Or how he figures out how to use all electronics before I even do.
Even though I've been living in this "autistic world" for a few years now I still find it interesting how so many of our kiddos with autism seem to not soak anything in yet can figure out the parts to a whole and how things work without ever being formally taught it.
As we all like to say, I have a little engineer on my hands.