H.U.G-Hold up and get permission-Post by Aimee

A hug is defined as a near international form of physical intimacy in which two people put their arms around the neck, back, or waist of one another and hold each other closely. 
Let's just take one moment to look at the words physical intimacy... Physical, in this case meaning, body and intimacy meaning belonging together.  This is all fine. I am a fan of hugging; I hug my husband, my kids, my family and close friends. What I am not a huge fan of is hugging someone upon the initial meeting. When did this become the norm? I understand handshaking carries a certain amount of germ passing on the other hand it also creates a certain amount of space between to human bodies.  Some people, Sophie for one, are not comfortable with physical touch.
When Emily was a little girl she would sit on my lap and we would read books, she loved to lay down next to me on the sofa during quiet time or snuggle between her dad and I. Sophie was a totally different story. Sometimes, with much reluctance, she would sit beside me-never on my lap. She never wanted to lay on the sofa preferring to enjoy quiet time in her own bed and forget about her squeezing in with Bill and I. My first thought was thank goodness, she is not one of those clingy kids! Then I became sad and longed for the days of cuddling with my little girl.  I stopped taking it personally when I noticed she didn't want anyone to touch her. She rarely even wanted anyone to hold her hand. In the world of ASD this isn't strange at all and our family adjusted. Her Auntie switched to high fives, I learned to ask before kissing her goodnight or holding her hand and her grandma and her began bumping elbows as a sign of affection. We were good. The family got the message and we saw clear sailing ahead.
As often happens a storm began to brew. Somewhere out in the world the hug became end all be all of greeting anyone and everyone. Soon people we just met were swooping in for the hug instead of saying, nice to meet you. I found a NY Times article dating back to 2009 exploring this same question and another as recently as 2014 explaining why the Asian culture is hesitant to embrace this salutation.
Overall we are a friendly family and know many people from all sorts of areas of life.  I am very active in a women's organization and see several of these ladies a few times a week. Some of us are very friendly with each other and grown to be close friends. They are nice women and there are a lot of them I hug. When they meet my family their natural instinct is to feel close to them too and want to hug them. As they approach Sophie with wide open arms I see her face change from indifferent to worry. Most times I can step in between and intercept the hug but once in a while I just cant make it.  My very good and very perceptive friend 'MB" sensed Sophie's discomfort really quickly and she began the fist bump with Sophie. Not only did she start fist bumping she asks first every single time. This is huge in Sophie's eyes and she and "MB" have become fast friends.
This morning as we were waiting for the school bus and chatting I asked Sophie how she felt about people who want to hug her. She promptly gave me two thumbs down so I decided to ask her what she could do when a encompassing clasp was heading her way. She immediately held up her hand in a stop sign and said, no thank you! Then I helped her with some other words to use such as, How about a fist bump and I don't like hugs!
I have to say that sometimes I agree with her. There are first encounters where I would like to hold up a hand and say, no, thank you. We just met. How about a fist bump?

Two Business Days- My struggle with IHSS Post by Aimee

The state of California has a program called In Home Support Services (IHSS). This is a program to help people with disabilities remain in their own home or to help pay for out of home care. We are eligible for this due to Sophie's diagnosis.
Like so many state funded programs the paperwork is very overwhelming, at times it is exhausting. The maze to complete the initial paperwork required me to think positive, read, read, read, give myself daily pep talks and ask several friends for help. Eighteen months ago I completed everything including the half day training required for me to be Sophie's care provider.  Things have been going along swimmingly, well that is until the last week of December.
Bill is a fantastic husband. He enjoys sweeping, vacuuming and "tidying up". It's that last one that gets us all in trouble. I am the type of worker who enjoys lists and small to do piles. As I work here at home I lay things out that I need to take care of or that require some kind attention. This system has worked fine for us for over twenty years, I mean it did work except for this calamitous day in December.
On Sunday December 28, 2014 I was getting all my paperwork in order for the coming week when I noticed my new time sheet from IHSS was missing. I began to move things around looking for it, Sophie's homework, a note pad, a party invitation......nothing. My search became more frenzied and I moved to my desk to look...nothing. Please understand I am in no way now or was I then accusing Bill of tossing this most important piece of paper but he does have a reputation for "cleaning up". The discussion that followed is a whole different blog suffice it to say no one has claimed responsibility for touching the time sheet.
All right I'll just call in the morning and request a new one, this must have happened to other people.
Monday December 29 I begin calling at 9:00am. I placed 65 calls all with no answer or a machine telling me how important my call is and to please hold the line. I am patient I can make phone calls I will just try again in the morning.
Tuesday December 30 I call at 9am to hear the same message as the day before. 9:10am I call again and a live person answers the phone! I explain to the woman that my time card has been misplaced and request a new one. She informs me that I must call a Ms Jones* and proceeds to give me her number. I am feeling a bit smug now as I think, Piece of cake one more call and I am done. I dial Ms Jones number only to be greeted by her voice mail. Let me explain this voice mail message of hers; It begins with a sound as if the phone is being thrown onto the floor then comes her voice. To say she speaks slowly is an understatement. Read this as slow as you can to get the idea, "hello this is Ms Jones. I cannot take your call now.....but if you leave me a message I will call you back in two business days....if I do not call you back in two business days please call my supervisor Ms Smith* at three.....one....oh....five....five...five...six....two...four...nine........." So I leave a message with my name, my child's name, my provider number, my case number, my phone number and a request for a replacement time card.
January 2, 2015 I have not received my return call and it has been more than two business days so I call Ms Jones again, wait through the long message and once again leave my information. There was a holiday during the week and I don't want her to get into trouble so I decide not to call Ms Smith. I hang up thinking I am sure she will call this afternoon.
January 6, 2015 Still no call back. Once again I call Ms Jones, the message now seems endless. I feel as if I have been on the phone for an hour before I hear the beep- again I leave my message with a urging in my voice to call back.  I now decide that it is time to call her supervisor Ms Smith, no more playing nice she must learn to return calls. I dial Ms Smith her phone rings and rings and rings. There is no answer and no message. I call back. This time there is a message, she too is unable to answer the phone but assures me that she will return my call in two business days, if she fails to return my call I am instructed to call HER supervisor Ms Johnson.  I jot the number down sure I won't need it.
January 9 No calls! None! I begin again, first Ms Jones and her drawn-out message. I am not holding back today next I dial Ms Smith leave her another message remaindering her that this is my second call to her and I have yet to hear back from Ms Jones even though more than two business days have passed. Now for the big guns Ms Johnson. I will be sweet and polite, assure her that the other ladies are probably just busy and while I don't want to be a pest I really do need my replacement time card. I take a deep breath and her phone just rings. It rings for almost five straight minutes before a voice comes on to tell me her mailbox is full. FULL?!?!?!?!? No chance to leave my message, no promise of a call in two business days nothing!
January 13 Desperate I call my friend, another special needs mom, who also receives IHSS and ask her what to do. "Don't go there'! she yells, "I lost my card once and went there and they won't even look at you. Here call these two numbers" I call the two numbers she has given me. The first one is out for an undetermined amount of time but feel free to leave a message, I leave a message. The second has a message proclaiming her the head of IHSS time sheets (yes) she also asks me to leave a message with all my information and numbers etcetera and she will call me back.....in two business days.  I am beginning to lose it a little.
January 16 I make the rounds of calls again. Now my voice is sad and hope is fading that I will receive a call in two business days.
January 20 No calls made or received
January 26 I begin my calls at 9am. When I get to the beep on Ms Jones' voice mail I beg, BEG her to call me back. I actually say, "I am BEGGING you to call me back!!!! If you can not help me please tell me who can"
January 28 Emily tells me to call my union. Yep, us long term care providers have a union. I call. The lovely woman who promptly answers her phone tells me to call...a Ms Jones. I quickly explain that I have been calling her, her supervisor, her supervisors supervisor. She puts me on hold.  When she calls back she advises me to call my social worker. I look for his number and call him. I get his voice mail.....He will return my call in two business days.
January 29 This was a gut wrenching very hard day for me and the family. We attended  a memorial for a young man we all loved very much. Feelings and tensions were running high by the time we returned home. I was sobbing. Bill was crying. Emily was crying. We began to argue among ourselves, My emotions boil over and I cry, body shaking sobs when my phone rings I pick it up and am about to hit the silence button when I notice the number.....the very familiar looking number. This is my chance! My one and only chance! Pull it together I tell myself. I go from crying to a very clear, very professional, "Hello" in a half a second.  It's my social worker!!!!! Replacement time cards he asks? Sure, I'll send them right out!  He called back and in only one business day!!!!

A Special Tribute about Love and Family- Post by Aimee

 

"Family isn't always blood. It's the people in your life who want you in theirs.

The ones you accept for who they are. The ones you would do anything to see smile,

and who you love no matter what"

Unknown

 

One day when Emily was sixteen years old she brought a friend home for dinner. I was setting the table when in walked a semi awkward teenage boy with green eyes and a charming smile. This is my friend, Cory. She said. After dinner Bill drove him home and I asked if he liked her, was he her boyfriend. No, mom! We are just friends. I few days later Emily pulls me aside and says, mom, remember when you asked me if Cory liked me?  Well he does and I like him. Just like that in that very instant Cory became a member of our family. He became a permanent fixture on our sofa, at our dinner table and eventually on vacations and holidays. We all fell in love with him. He made us laugh, He was wonderful with Sophie, He helped around the house and sometimes he made us cry.

They were kids, I expected them to date for a year or so but this was a deep and lasting love and the longer Emily and Cory were together the more Bill and I became to regard him as another one of our children.

He had suffered loss in his short life and would often come to me for 'mommy advice'. He and Emily were my 'Frog and Toad' as I called them. I picked him up after he was fired from a job, I made him soup when he was sick and we told him we believed in him.

Before we knew it Cory was at every family birthday, all the holidays and came on vacation with us several times. Bill would walk out to the pool in Palm Springs and come back to the room saying, When did Cory get here?

One year in Palm Springs my mom had this idea to buy a Panini Press. Now my mom gets the name of everything mixed up and soon there were shouts of, who wants a Ka-ba-she?!?

Cory and my mom began making sandwiches for everyone, Ham and Cheese, Turkey and Swiss, Three Cheese. Day after day Ka-ba-she's were flying out of the kitchen until one of the last days when there was no more bread, or lunch meat....Then Cory started making Ka-ba-shes from bagels filled with guacamole and hot dogs, not good. It was on this same trip that we learned a little tid bit about our boy, he was terrified of cotton balls. He tried to convince us that he wasn't scared but actually allergic to cotton balls touching his skin. That was all Emily had to hear she was off and running chasing him all over with cotton balls as he yelled and screamed. My mom, sister, Cory and Emily were laughing hysterically and decided to call me into the room stating that there was an emergency. I walked in to find the three of them laughing at Cory crouching in the corner to get away from the cotton ball. I asked what was going on and Cory says, I am allergic to cotton...look hives!!! Trying to hold back a laugh all I could reply was, Oh honey, no that's not possible.

A couple of years ago Cory was jumped on his way home from the beach. He was stabbed in the arm and hit over the head. He made it to a friends house and called for help. Emily was up at school at the time and called us to help him. Early the next morning after he had been released from the E.R. I went to pick him up. I brought him home and put him in our bed. When Bill got home from work and started into the bedroom I told him to be quite because our boy was sleeping in the bed. The look on Bill's face was priceless. He was one of our kids and we wanted to take care of him.

Frog and Toad had ups and downs, they are young it's to be expected, but no matter what they always found their way back to each other. Most of the time I wasn't aware of them seeing each other during their times apart but I always kept in touch with Cory and he would tell me. We checked in with each other, he and I, and I always told him to be a good guy, make good choices and that I loved him.

Cory was in a fatal motorcycle accident three weeks ago and I still can't believe I'll never see him sitting on my couch again. I'll never see that mischievous grin again or see him run screaming from a cotton ball. Emily is heartbroken and Sophie just keeps saying, he was my friend.

No parent is ever prepared to lose a child. It goes against all we learn is natural but the loss of a child in a family of choice puts me in a type of no man's land. Am I mourning too  much? Too little? Do I have the right to feel sad and to feel this sense of loss? I am a mother who thankfully still  has her children but has lost one all the same.

I love you Cory and I am so grateful and lucky to have had you in my life and family for the past eight years.