Missing Someone at Christmas

I’m going to get away from my series about parenting aspecial needs child today to talk about something I think most people canrelate to.  I hope you don’t mind. I’llget back to the story about Imma’s journey tomorrow.

Word has it that the Mayans believed the world would come toan end in 2012.  As we approach the dateof the end of the Mayan Calendar and people across the globe discuss whether ornot they truly believe the world is going to end, I’d like to point somethingout.  The world already ended in2012.  If perception is reality, ifperspective determines realness, the world ended in 2012. The Mayans were stillwrong.  They were off by about 7 months.But as far as I am concerned, 2012 marked the end of the world, my world, as Ihad always known it. What I am living in now is something else, some new world,some different age, something I am building and creating as I go along.  Because my world will never be the samewithout my dad.

Maybe that sounds overly-dramatic or sappy, the world endedbecause my dad died, but if you’ve been in the position where you have lost aloved one, then you know exactly what I am talking about.  Sure, time still marches forward, we keepspinning, keep moving, but everything is different.  You will never hear a song the same way,watch a movie the same way, eat the same way. Everything is tied to a memory, a moment, a laugh or a smile.  It’s the same planet but it’s a differentworld.

Christmas has been particularly difficult because I spentalmost all of my Christmas’s with my dad. I think I may have missed five or sixat most because we have lived so far apart the last few years.  Every Christmas since Imma was born, my dad,youngest sister, and step-mom have come down to visit us, except last year.  A few years ago when it snowed heavily onChristmas Eve, they made the trek through the ice and snow just in time forchurch. They only went in the ditch once. But that’s how my dad rolled, literally. I remember the first ChristmasEve service he went to at the church we attend. After the service, he patted me on the shoulder and said he was proud ofme for finding such a great church to take Imma to.  Those are the types of memories Christmasevokes.

And there are thousands of those memories.  ChristmasVacation, can’t watch it this year. Love that movie but keep hearing my dad laugh every few seconds.  He always misquoted the line but I love itjust the same, “The little lights aren’t twinkling, Clark.”  It’s the same with A Christmas Story, It’s aWonderful Life, any of the cartoons. They all elicit memories of my dad laughing, calling us silly names,like “Klonk,”  or “Slonk-oh,” quotingline after line and eating popcorn on the couch.

My dad and I dancing at my wedding, photo bomb courtesy of my little sister, Braidi.

When I am in the car almost every song brings back memoriesof my dad, an extremely gifted musician. This summer, I remember being blinded by tears as I drove to the storeto the tune of, “Take Me Home Tonight,” simply because my dad had owned the 45.Christmas music brings a whole different sort of sadness.  My dad sang carols like no one else. He had asweet falsetto, beautiful harmony, and a gift for finding exactly the rightkey.  He would also change the word tothe song so that our names were in it. Every time I hear “I’ll Be Home forChristmas”  I hear my dad’s versions, “I’llbe home for Amy,” except he would purposely sing my name in a booming bassvoice off-key.  Those were the sillythings that will always stick with me. Those are the memories I am glad to havebut they still make Christmas very difficult.

My dad loved my home-made pizza. I’m not sure why.  I don’t cook so it’s nothingcomplicated.  Pre-made crust, jar ofpizza sauce, bag of cheese, and toppings. That’s all.  But he loved it so we had it almost everyChristmas Eve.  One time he didn’t getany because he was out picking up a few things I needed when we were eating. Itried to save him some but it was all gone. I’ll always remember things like that, the time I wish I had back to doover.  And every Christmas Eve, we willeat pizza, and miss Paw-Paw because he could eat pizza like no one else.

We will make new memories now, in this new world, the onethe Mayan’s predicted so long ago.  Wewill make silly songs for our girls, watch movies for the first time, laughbecause Lucy calls Elf “Santa” instead of Buddy.  We will eat pizza, probably store bought thisyear though because I don’t feel like making it.  We will give each other silly names and eatpopcorn on the couch.  And we will talkabout Paw-Paw. We’ll remember all of the good times we spent watching Christmasmovies and laughing.  We’ll talk aboutwhat he used to say, what he would have said, and what he would have sang orwould have preferred to eat.  We’ll go tochurch and be happy that dad thought it was a good place to be.  At the same time, I, like many of you, willneed a moment from time to time to catch my breath, to wipe away some tears, tofind the joy around me and to know that dad is there, even if I can’t seehim.  As Charlie says in The Santa Claus,“Just because you can’t see something, it doesn’t mean it isn’t real.”  My dad is a real part of our lives, still,and always.  This Christmas I will misshim so very much, but I will  continue toconstruct this new world, one memory at a time.

The Journey to "Normal," Part 2: Early Childhood Intervention

11 months. The news hit me in the heart much in the same way a fist to the stomach leaves you breathless and spinning. It wasn't possible. There was some sort of mathematical error, these people were crazy, I didn't understand what they were saying and just needed a little clarification. But when it was explained to me again, the answer was still the same. 11 months.

Imma at 2 1/2. We had finally gotten the evaluation done. In Texas, when you think your child may have a speech or developmental delay, may need some sort of therapy, you contact Early Childhood Intervention. In Collin County, the organization is called Lifepath Systems. You make a quick phone call, in my case, an extremely polite and understanding professional takes some information, reassures you that everything will be just fine, sets an appointment, and the some nice therapists and diagnosticians show up at your house to see if your kid's alright. Simple enough. The evaluation itself was conducted by a speech pathologist and a diagnostician. They gave a few weeks before Christmas and stayed for about two hours. They asked Imma to play with certain toys, look at certain books, manipulate certain objects. They asked her questions she could not answer, they asked her to sing songs she could not sing, and they asked her what sounds animals made. That, she could do. They had lots of questions for me, too. What she could do, what she couldn't do, what she like to do, what she didn't like to do, what she knew, what she didn't know, etc. Was there anything unusual about my pregnancy? Was there anything unusual about the birth? Was there a family history of learning disabilities, mental retardation, birth defects, etc.? Had she suffered any traumatic brain injuries or blows to the head? No, no, no. None of those things. She just couldn't talk. That's all that was wrong or different, I kept repeating, she just didn't talk! In fact, I even explained that we thought she was choosing not to speak, that she could if she wanted to. They were polite, they made notes that began with stems like, "The mother reports. . . ." I know those reports. I've taken those reports. They asked if we had had her hearing checked. Yes, we had. She can hear. She just doesn't respond. They understood. They would go back to the office and do some math. They would look at some charts and spreadsheets, use some equations and tables to figure some things out and they would be back in a week. One week and I would finally know what was wrong with my baby! Except for they didn't know. They came back in 1 week, this time with an Occupational Therapist as well. They talked about how sweet and beautiful Imma was and how lovely our home was, and how we were all going to have a Merry Christmas. Then they pulled out their charts and reports. Again, I am familiar with standardized screening and diagnostic tests. Part of my job is to help identify students who may need special education services. They talked to me like I had no idea what a "chart" was, and that's fine because at the time it didn't matter. I was waiting for them to say they were sorry but Imma just didn't qualify for their services. But of course, Imma did qualified for their services. In fact, of the four areas they tested in, Imma qualifed in two of them and almost a third. She did extremely well in the category that judges physical capabilities. She did extremely poorly in the language and communication category as I expected and she was borderline in another category that had to do with potty training, napping, that sort of thing. She was behind in her social skills, as far as interacting with other children and adults. And then they threw the number at me that made me stop breathing. According to their screener, she was significantly behind in her cognitive development. Again, I had to ask for clarification. My child was very bright. She could sort objects by color, she could problem solve like no other two year old I'd ever known, she could manipulate objects, find ways to make things work and had spatial reasoning skills that I couldn't believe but these people were telling me she was extremely behind cognitively. How far behind? 11 months. She's 30 months old. Do you mean she has the cognitive abilities of a 19 month old? Yes, she is 11 months behind. That's almost a year. Yes, cognitively, she is 11 months behind. At this point I asked a lot of questions about how they came to this determination. They showed me the charts, pulled out the tables, explained the questions and how they figured out what that implied. They said that most of the scores were based on her ability to answer questions and sing songs, recite nursery rhymes, etc. I said, "But she can't talk." They knew that. "So, how do we know that's not just an indicator that she can't talk and not an indicator that she is cognitively behind." They admitted that the test was heavy on the oral language skills and it is possible that she could be just fine cognitively but the test indicated that she wasn't. She was cognitively behind because she couldn't sing "Twinkle, twinkle, little star" tell then her name, tell them which picture was a cookie. I assured them that she knew those things, she just couldn't say them. They were very understanding and assured me that everything was going to be just fine. She would qualify for speech and OT services and they would find ways to help her develop. I still don't know if they believed my child was really that far behind or if they understood that you cannot judge a non-verbal child's intelligence based upon a verbal exam but we set up a schedule for the speech therapist to visit us once a week at home and the OT to visit once every two weeks at pre-school so that she could do play therapy with Imma while there were other children around. We had a plan in place now, and even though I was still reeling from their numbers, I was able to accept that she needed some help and I was hopeful that this would be exactly what she needed to be "normal" like everyone else's child. My final question was one I had been asking, and have been continuing to ask for quite some time. What caused this? The answer I got is a variable of the same answer I've been getting for years and may always continue to get. "She hasn't developed her ability to communicate verbally." Yes, but why? "Well, when she hears speech, she doesn't understand how to process it." I understand that. But what causes that? "It's some sort of developmental delay." And so the circle continues. At the time, it was very important for me to answer three questions. 1) What is wrong with my child? 2) What caused this? 3)How do we fix it? The last one, of course, was the most important one and I was content for the time that we were finally on our way to answering it. We would have 6 months of therapy through Lifepath Systems until Imma was 3. At that time, she would fall under the jurisdiction of the local school district, which I happened to work for. Of course, I was confident that we wouldn't need 6 months of therapy, but if we did get to the point where she would need to be evaluated by the school district, she wouldn't need any services, except for maybe speech. But like everything else on this journey, that mountain was around the corner and I could not yet see how extremely steep and sharply designed that path would be. If you live in Collin County Texas and you suspect your child may benefit from Early Childhood Intervention, please contact your pediatrician or Lifepath Systems at 972-562-0331, www.lifepathservices.org. There are lots of websites available if you have questions about what services you qualify. You can look at your state's official website. Early Childhood Intervention is the name for these services in Texas but it may be called something different if you live in another state, such as Ready Start.

The Journey to "Normal," Part 1

This is the first installment in a series I intend to write to detail my experiences as a parent with a special-needs child. This article is meant to help parents in similar situations understand that they are not alone. These are my experiences, my thoughts, my feelings and I lay them out for the world to see because I hope that, through my long and tedious journey down the road toward “normal” another parent’s journey may not be quiet as tough. There wasn’t a clear point in time that I can look to and say, “That’s when I knew.” Unlike some diseases there is no crystal-clear point in time when someone in a white coat says, “Mam, your child has autism,” or “sensory integration disorder,” or “language processing issues.” In fact, my daughter is five-and-a-half and I have yet to hear anyone say conclusively what my child has. At this point, there are more specialists telling me she probably doesn’t have autism than are saying she does. But clearly, there is something different about my child. And this isn’t discovered over night. It’s in the little things. When your two year old doesn’t look at you when you enter a room. When everyone else’s children are playing together, and she is under a tree, digging for who knows what. When you’re at swimming lessons and the well-meaning teenage instructor, frustrated after an hour of trying to communicate says, “Lady, I think there’s something wrong with your kid.” That’s when you start to realize it’s time to find out what’s going on. When Imma was a little girl, around a year old, we would enter a restaurant and she would talk to everyone. I used to say she never met a stranger. She’d find an older man to flirt with, wave, blow kisses. She was the social butterfly I assumed my child would be. I had visions of a chatty-Cathy type of child, much like I was. Reading at four, telling enchanting stories, playing make-believe. And, like most parents, I had huge aspirations as well. I hoped that she would have the benefit of being in a gifted and talented program, I’d learned so much about how to think from mine. I assumed she’d play sports like everyone else in my family always had. A lot of my family members are musically inclined as well so I envisioned recitals in our future. And at 12 months, Imma was exactly what I thought she would be. And then something changed.

Caption: Imma at 14 months, ever the social butterfly, smiling and laughing. It was a gradual realization, too, as it often is. At first I made excuses. I think most parents do. She doesn’t look at me when I come in the room because she is so busy playing. She hears me but she chooses to ignore me because she’s being a little diva. She doesn’t want to play with the other kids because she is too sophisticated for them. She doesn’t speak in complete sentences because I always know what she wants and I just let her get away with pointing. Eventually, however, enough people said something to me that I had to do something to prove they were wrong. Not to prove myself correct, I assure you, but to validate my assumption that there wasn’t anything “wrong” with my child. She was just a little different and that was okay. After all, the doctor had done autism screenings on her at every check-up. We have a fabulous pediatrician and she was quite sure at Imma’s 18 month check-up that she was just fine. At 2 years, I voiced some speech concerns and she said it wouldn’t hurt to have her evaluated but it was fairly normal that she wasn’t speaking as well as I, a first time parent, expected. She assured me that she was probably just fine. But it doesn’t hurt to check. But I didn’t check. Not just then anyway. If the pediatrician wasn’t losing sleep over it, I wasn’t going to either. My husband and I made a resolution that, if she wasn’t making progress by 2 1/2, we would have her “checked out.” Then, she started pre-school. The differences in Imma were apparent immediately to the staff, particularly the director. Almost daily, I received an update or a comment about what Imma was not doing. I wasn’t completely in denial at this point, but some of the things they said Imma “couldn’t” or “wouldn’t” do at school, she was doing at home. For example, Imma has always loved animals. She would spend hours pointing at animals and telling me what sound they made, sometimes she could tell me the names of the animals in an almost understandable voice, too. At school, she wasn’t doing any of that. If a teacher asked her the name of an animal or the sound that it made, she stared blankly. She often stared blankly. Other developmental milestones she had not reached at home or at school. She didn’t seem to be aware of the other children as much as she should be. She wouldn’t stay with her group. She was always wondering off to another group of children. If she was given a simple one-step direction, she would seldom, if ever comply. She wouldn’t answer simple questions like, “What is your name?” The teachers were very concerned and my concern was growing by the minute. And yet, still, I waited. I was pregnant with Lucy. I was working a lot. These are the excuses I used. But mostly, I was scared. I was scared there was something drastically wrong with my child. As much as you want to know what is going on with your baby, you also don’t want to know. Because when someone in a white coat tells you something, often, that makes it true. And if you don’t know if something is true or not, you can always hope that it isn’t.

Caption: Imma at 25 months. She was fading away. When Imma started lying down on the floor in front of each apparatus at gymnastics, the instructors began to ask questions. I took her out of gymnastics. I was too pregnant anyway. When my friends started asking if she knew her colors, if she could tell me her address, if she could say what she wanted to eat, we stopped having friends over. I was slowly closing her in, deeper in to the world that she was retreating in to on her own anyway. I asked myself every night what I had done to my child. I must have done something wrong when I was pregnant, though I never drink, never smoke, hardly ever even had caffeine or Tylenol when I was pregnant with her. I thought maybe I didn’t give her enough vitamins or vegetables. Maybe she was watching too much TV or I didn’t read to her enough. I started doing research. I needed to find a cause or at least a diagnosis. But nothing I read sounded like Imma. She would meet some of the criteria for one thing but not all of the symptoms, and then a little of another but not most. It was so aggravating and heart-breaking all at the same time. I would oscillate between there’s nothing wrong with her, what in the world is wrong with her, what did I do to her, and why did God do this to me? Finally, when Imma was two-and-a-half, we decided to have her evaluated. Her differences by then were very obvious. She was hardly talking. What she said was barey ever understandable. The little social butterfly had flown away and left me with an aloof, often completely closed off child. We decided to have Early Childhood Intervention take a look at her. Even though I could see all of these differences between Imma and other children her age, I was very sure they were going to tell me she was just a little delayed and she would be fine by the time she was three. What they actually told me was so shocking, it took my breath away.

A Few Words About Autism and Anger

I talked a little bit about this on Facebook yesterday so I apologize to those of you who follow me on both but I feel like I can elaborate a little more here than on Facebook. We are all devastated by the events that transpired Friday in Connecticut. Those of us who are educators, and parents, and have children with special needs are hit numerous times with the similarities between what unfolded for those children, those parents, those educators on that fatal day. As a teacher, I've already expressed on this blog how empathetic I feel for those noble educators who guarded their children, some of them to the last. As a parent, I feel overwhelmed and terrified at the consideration that this could happen to my children. As a parent of child who was once believed to be autistic, however, I have to also look at the implications that this event may have on children like mine, particularly concerning some of the labels that are being thrown around the media. Well meaning relatives, citizens of Newtown, even reporters, are talking about how it is possible that the killer was autistic. I don't know if anyone has purposely implied that those two words go together but, I assure you, THEY DO NOT. Nor do the words autism and mental illness. They are not synonyms. They cannot and should not be used interchangeably. If we begin to use them in the same context, the implications could be detrimental to an entire group of children who need our help, not our revocation. It is extremely important that those of us who understand this continue to speak out and correct people who are making assumptions or who are perpetrating stereotypes through ignorance, and by ignorance I mean literally "not understanding", not "stupidity". Ultimately, mental illness reform should be one of the results of this terrific tragedy. If we are to move in that direction, we must band together and ask ourselves, "What can I do to help this cause?" I am not sure exactly what I can do at this point but I am looking for ways that I can help. I hope this blog will help in some regard. If it helps one person to understand why they should never even imply that a person with autism is mentally ill or is capable of violence solely because they are autistic, then it has helped a little. I would like to do more. Suggestions are welcome! While I am hoping to clarify that autism does not make one violent in and of itself, neither am I implying that persons with autism don't get angry, can't be violent, never suffer from mental illness. Of course they, like anyone else, could potentially fall in to more than one categories. But autism by itself is not what made this man commit these crimes. Let's be very careful never to imply that it was autism that made him do this. If you hear someone do so, please correct them. If you are looking for more information about characteristics of autism, please visit: www.autismspeaks.org/what-autism That's my two cents. I would love to hear yours. Thank you for visiting and please feel free to leave a comment below.

Girls' Weekend In! Just me and my lil' princesses

Daddy went hunting this weekend. He'll be back in a few hours (hopefully!) Just a few notable highlights from our weekend together (posted more for my memory than your amusement, though some of it is amusing!) Friday: Go to Sonic for dinner because Mommy is not a "cooker." Imma screams because she wants a hot dog and does not want Lucy to have a hot dog. Lucy screams because she wants french fries and doesn't want Imma to have any. Mommy gets both items for both girls. Girls argue about whose mommy I am. "She's my mommy!" "No, she's my mommy!" Imma eats hot dog--and mommy's chicken. Lucy and mommy eat french fries. Go home, watch "Erella." (Cinderella in Lucy speak.) Take bath, splash water all over bathroom floor, up the wall and into the hallway. Go to bed. Saturday: Imma-Dog wakes up at 6:30 and pounces Mommy. Mommy makes the following items for breakfast: Cinnamon rolls, cereal, popcorn, chips (okay, didn't make but still had to plate), french fries, chicken nuggets. Imma and Lucy eat chicken nuggets for breakfast. Other items thrown in trash. (Please do not judge my parenting by the food choices I let my children make when I have no "cooker" at my house.) Go upstairs and destroy play in toy room. Decide to build forts. Scream when fort collapses. Mommy fixes it. Scream when fort collapses. Mommy fixes it. Scream when fort collapses, repeat for several hours. Watch Nemo on computer and "Erella" on tv in same room, simultaneously. Lucy take a nap. Imma-Dog roll around on bed where Mommy is trying to take a nap. Have various items for lunch, most of which went into the trash. Remember that Lucy's hot dog is in the refrigerator. Offer it to Imma. Be irrevocably told no! Offer it to Lucy, be told yes, then no, then yes, then no. Leave hot dog in refrigerator. Go upstairs and watch Spongebob "Squash" Pants while destroying toy room. Lucy dumps bag of popcorn all over the couch. Mommy remembers why we don't eat in the toy room. Mommy wears slippers on the stairs. Finds out why they are called "slippers" and takes a ride down half of the stairs. Breaks bottom. Cannot walk correctly for rest of weekend. Girls take bath. Try one bathtub, fight, splash, dump buckets of water on each others head. Lucy moves to another bathtub as far away from Imma's bathtub as possible (we live in a LONG house.) Mommy gets exercise by running (as fast as possible with broken bottom)from one girl to the other. More splashing, more buckets. Finally get girls out. Settle down to watch "Errella" again. Put girls to bed! Sunday: Imma-Dog pounces Mommy at 7:30 (yes, we slept in!) Suddenly, everyone wants cinnamon rolls! Mommy makes re-heated cinnamon rolls from yesterday, cereal, and chicken nuggets for breakfast. Imma-Dog eats everything. Lucy eats nothing. She does not feel well. Lucy persistently asks for "Amadeus" and her "wankets." Mommy finds "wankets," Mozart nowhere to be found. Lucy insists that Daddy is at home, even though he's not. Decides he is at work and there is an owl in that tree. Not related. Imma wants to watch Spongebob Squash Pants but Lucy wants to watch "Erella." Settle on a movie about a fish, not Nemo. Mommy somehow finds time to update blog while Imma watches Three Little Pigs on iPad and Lucy looks for one of the greatest composers of all time. Happy Sunday y'all!

Disney World Trip in Pictures

Glitter and Tulle Boutique Blog GIVEAWAY!!

Happy Saturday! Christmas is coming! Wouldn't be awesome to have an extra $50 worth of gifts to give? Glitter and Tulle Boutique is giving away a $50 gift card to my etsy or Art Fire store. To enter, just visit my other blog and sign up to follow that blog. That's all you have to do and you could get $50 to spend on anything you like. Pretty awesome, huh? www.glitterandtulleboutique.blogspot.com