Of course, ANOTHER snow day. I am sure everyone is tired of my complaining about the cold, snow and snow days, but in all honesty they are very draining. Yesterday was a snow day and I knew by yesterday afternoon that I was in deep trouble for today. I really didn’t want a recap of the previous days occurrences. First, I knew when I got up and walked down the hall to Hayley’s room it was going to be bad. As Hayley watched me approach her room, that sly little smile appeared on her face and i KNEW……as I tried to run the final few feet to her room (mind you I am definitely not a runner, so maybe it was more like a fast shuffle) it happened. Hayley jumped up on her bed, squatted and peed, and of course it had to be that first satisfying pee of the morning. Now, I cannot say anything to her or give her any type of facial expression because she is looking for attention. I will tell you that in my head I had a volcano exploding, but outside I was calm as could be. As Hayley laughed and kept trying to look in my eyes, I took off the sheets and blankets, got towels to soak up the mess, resolve to clean, more towels to soak and then brought Hayley to the bedroom her clothes were in. I had her get dressed and then help me bring all the wet bedding and towels down to the laundry room. Breakfast went ok until I told Hayley eating was all done, this is NEVER pretty. After screaming, throwing her spoon and yogurt cup across the room, rolling all over the floor kicking everything in sight and ultimately smashing my coffee cup on the tile floor, she calmly walked into the Sunroom, sat on the floor and dressed her Barbies. Hayley is a whirlwind, all this lasted for about 20 minutes and as I was picking up the first thing, she went to the next. Now mind you, as all of this was transpiring, Hunter is in the Great Room playing a Pokemon game on WII, he is saying “mommy look at this, oh isn’t he cute, would you like to play this game, why is the Open Season 3 only 78 minutes long”? I am pretty much going hmm, umm, uhha etc., hearing but not hearing. There were more tantrums to come, a lot of hysterical laughter which cumulates into some sort of destruction – breaking dvds & videos, taking off barbie heads, breaking crayons, spraying water, smashing fruit, the possibilities are endless. Then there is the moaning, moaning, moaning……….this can and did go on and off for hours. With every moan you can feel your stomach tightening more and more into a knot. Again, this behavior must be ignored (or so they tell me for now) because Hayley thrives on attention and control. Every once in a while I will ask her to use her words so I know how I can help her, but mostly she continues to moan. It probably sounds like I just let her run amuck, but that is not true. In the mean time I am trying to engage Hayley in different things, it is difficult because I must be with her every minute, I cannot let her out of my sight for a second or all hell breaks loose. I have many, many other things to engage her in. I have different types of arts and crafts, games, puzzles, new movies, toys etc. I spend sooo much time with Hayley trying to keep her occupied which is a feat in itself, not including the behaviors. I DO have other obligations in the house to my husband, other kids and chores. I try to squeeze Hunter in every here and there, do laundry, clean up, make beds, dishes, cook………………………… Plus, I must address Hunter’s needs because of his Aspergers. I will tell you that he has done a wonderful job the last several days teaching Hayley how to use the mouse on the computer. He has shown her different websites she would be interested in, although she can’t type in the web address, Hayley tells Hunter what she wants and he puts it up for her. He is very patient (which really isn’t one of his virtues) with Hayley. Don’t get me wrong, he will come and tell me his head is pounding (my line) from too much Elmo coloring pages or he really is getting sick and tired of the Donald Duck cartoon, but all in all he has been great with her. All of this is exasperating, stressful, upsetting, tiring, I could go on and on, yet I love them with my whole heart and try to do my best for them and advocate for them.
Today I would say is somewhat better. I woke at 5:00 to the Honeywell Instant Alert System telling me there was not school. Dave got up at 5:20 to go to work. I heard him wake up Craig to help him dig and salt to get his truck out of the garage. We have an alarm and we have the door chime set…….Beep, beep, beep, beep. Then I hear Craig coming back up the stairs…BOOM, BOOM, BOOM, of course he left the hall and kitchen light on which I could see illuminating into the foyer and my room. Ok, I dozed on and off when finally at 7:00 I knew I needed to get up. I threw a prayer to God “please keep my family safe today and PLEASE get me through this snow day”. I took a deep breath, got ready and faced the next challenge. Hayley did not wake up until 8:30 which is a miracle, I enjoyed two cups of coffee while Hunter STILL was asking me WHY IS OPEN SEASON 3 ONLY 78 MINUTES LONG WHEN THE FIRST AND SECOND WERE 95 MINUTES LONG!!!! Honestly, I had no answer that satisfied him, I just wanted my coffee, I had to tell him that My Head Is Beginning to Pound………………
Hayley gets up, quietly comes down stairs, no accidents, I bring her to the bathroom. Except for eating some toilet paper, all went well. She had breakfast and a drink but when she asked for more to eat and I said not now………………………WOW. I was dreading the day. Hayley had a few tantrums, then started laughing and when I looked over at her while I was loading the dishwasher, my eyes popped open wide! She had managed to sneak an avocado and totally smashed it and mashed it ALL over her baby doll (with a hundred crevices) and herself. She is hysterical, I walked over, took the doll, wrapped it in the towel and brought Hayley to the shower. Not pretty because she wanted a bath, but I stuck to my guns. I am really hoping some day I can say “Hayley go take a bath/shower” , that is not in the cards right now. Let me tell you it isn’t easy trying to get a very wet, non compliant, extremely slippery, tall, sturdy child out of the shower. Once I did we went through the drying, getting dressed, hair drying ritual. I won’t even go into details, it is exhausting. When we got downstairs, Hunter did offer to help her on the computer which allowed me to go back up to the bathroom to clean up the mess.
While Hunter was helping Hayley on the computer, I got a call from a florist saying they had a delivery for me. A half hour later I was given the most beautiful yellow flower arrangement. It was from my Kevin and Devon. i The card said that there was only 4 more weeks until Spring and they hoped today was my last snow day. This really cheered me up. I was so touched, it was such a nice surprise. I have the best children in the world.
I won’t bore you by going into the rest of the day because it really was much of the same thing. Even out of the difficult situations that occurred yesterday and today, I was given such a nice surprise that really uplifted me. A very good thing that has come out of this Autism journey is that it has made the older children more aware and compassionate. There have been many times over the last several years that each of my older children have done something to uplift me, even if it was just a hug. They understand the journey and are there to support Dave and I as well as each other. The thing is, when you have children with disabiities, you tend to lose friends and family. They don’t understand and I guess don’t know what to do or say. It is easier not to mention your difficulty or make believe it is not there. We do not get invited to anyones house and I don’t know if I really would want to because a new place is very challenging for the disabled children so it makes it harder on the parent, yet the offer would be welcomed But, and I have heard cancer patients say this before, maybe just a phone call to say “hey how is it going”, maybe let you spill out your frustrations and fears, or just talk, about the weather, current events or even the “Jersey Shore”. Don’t be afraid, we will not burden you, we aren’t going to ask you to babysit our children, we just want to know there is someone out there that is just willing to talk even if it is about the weather. So, if you do know a family out there that is in a position like ours, support them, let them know they are not alone.
After the flowers, and another tantrum, Hunter and I got to have a Skype visit with Bill Shaffer, Katie’s boyfriend, who is studying at Le Cordon Blue in Paris. He has been there for a month and it was the first time we got to see and speak to him. He filled us in on life in Paris (hopefully I get to go in July when Katie is there), the good and I difficult…..it’s the French, does it surprise us Americans? It sounds wonderful and it is an opportunity of a lifetime. He looks happy, he is very busy and has been practicing his French. We had a nice visit (although for all of Hunter’s busting to talk to Bill, he said like 3 words…..typical Hunter).
Lastly, cherish your children, don’t take them for granted. Enjoy the everyday normal things they can do. Like I have said before, we took these things and milestones for granted with our older children. But now, we would give up everything if Hayley could have girlfriends, go to birthday parties, know who Hannah Montana is. Or Hunter to be able to play baseball, go to socker, have friends come over without being overwhelmed. In this life, none of us should tak anything for granted.
NYC Marathon for Autism Speaks