Author: autisminourhouse

The biggest boy in the house and his son and I will head to the best dentist office in the world this morning. This is a last minute change; yesterday the office called and said they had a few spots open. This is really a good thing. Joe will have his x-ray to see if the bone graft took (fingers and toes crossed, knocking on wood, etc. etc.) and five (possibly six) teeth removed. The teeth are all healthy, but are in the way of other, permanent teeth coming in. The doctor assures me that it will be an in an out type of procedure and that he will be roaring to go tomorrow. The dentist also said that everyday we should see more and more of the permanent teeth moving down.

This is the first(ish) step toward palate expansion and the first set of braces for our big guy. He doesn’t want braces AT ALL. I can remember being about his age and wanting braces SO BADLY…not so much because I needed them (although to see pictures of me when these huge suckers came in you would have thought I was in need of orthodontic intervention.). I got off track there, didn’t I? I think I wanted braces because I knew they were a sign of growing up; my mom taught high school, I saw so many of those kids with braces and I thought they were cool. Alas, I was graced with headgear for an underbite. That made me the hit of sleepovers. A kid with the hair do of an 80-year-old and headgear. No WONDER I was so frightfully popular. Wait. I did it again, right? Totally off track. Sorry.

The good news is that Joe won’t miss school for what we had scheduled as
two separate appointments. He should be able to resume normal diet. (hip-hip-hurrah!)

Exciting times.

Hello, I am struggling to know exactly what to share with you all and what to keep private and see how the year starts off for Joe. To be honest, I don’t want to color your vision of Joseph before you get a chance to know him. In all fairness, however, I want for you, his teachers, principals, nurse, librarians, aides and the rest of the devoted staff at GE to know his possible challenges. Joseph is an extremely bright, kind, loving, wonderful little boy who happens to have Asperger’s Syndrome. He comes with a unique set of challenges-as do all children- not just those on the spectrum. One of Joe’s greatest challenges is knowing how others are feeling-especially in relation to himself. If you are frustrated with his behavior and choices (which you will surely be- he is a seven year old boy, after all) you have to verbalize this. He cannot pick up on the social cues that one gives. It’s not that he doesn’t care; he cares greatly and wants to please. It’s that, often, he does not know how to unless he is given specific instructions. He has to be told what you want and need him to do. Another area of challenge for Joe is eye contact. It’s almost painful for him. He taught himself to look at people in the general area, but cannot maintain even that for more than a moment or two. He often seems as though he is not listening as he’s looking around the room and fidgeting; however, more often than not, he is. Often for kids on the spectrum, looking at faces can give them too much input to sort and file in their brains. This leads me to another challenge for Joe. Children on the spectrum often experience the world in a much more intense way in regards to their sensory processing than you and I. They receive a barrage of information that can be SO intense that it is painful. Imagine trying to block out the hum of lights and electricity, birds chirping on the playground, talking in a room four doors down, the smells that come along with school and so on and so on all while trying to maintain calm and order within so that you can do the one thing you love most in life – learn. It’s physically and emotionally exhausting. Add to that a sense of anxiety that never quite goes away. This can lead to stimms (for Joe this can be squawking, flapping, rocking, pinching himself) ticks and the dreaded meltdown. I am hopeful you won’t experience this issue. We expect Joseph to behave. We expect for him to be challenged. We, at home, treat meltdowns in a much different way than a tantrum. Tantrums are short and easily diffused. Meltdowns are entirely different. They occur, for Joe, when all coping mechanisms have failed him. Please do NOT try to talk him out of a meltdown. This makes things worse for him because he wants to please you and he is in a moment of not being able to. Also, it’s more sensory input at a time when he cannot take it and use it. Usually, a “cool down” spot and some time to get himself together are all that is needed. Later, when the meltdown has passed and he is under control and is able to communicate, talking can help. Although, it can bring his anxiety back to a boil… Joseph carries a pocket fidget to help curb his anxiety. He calls them squeezy toys. These are a great coping tool for Joe and are a huge source of comfort. If he is being a distraction with the squeezy, we’ve told him the teacher can put it away. Please, don’t use the squeezy as a punishment during a meltdown…not that anyone would, but this only sets him up for further failure to calm himself and please. Joseph’s previous teachers (Insert Names Here)are an excellent source of knowledge on how to help Joe succeed. I hope that this note hasn’t scared you to death. Joseph is a wonderful child and truly wants to learn. He seeks knowledge constantly. He is enthusiastic, warm, sensitive, funny, silly and just plain AWESOME. My goal for this year, as a helicopter mama, is to hover just out of sight…keep my radar up but give the boy some room to stretch his own, wonderful, beautiful, fabulous puzzle piece wings. Please, feel free to contact me anytime. My cell phone is with me at ALL times. Thank you for taking the time to read this. I feel like writing it has helped me understand Joe in a way that only putting things down in words can do. Sincerely, Kristi Gold Some books I’ve found helpful to understanding Joe are: (On being 2E-Gifted and having learning differences) Different Minds: Gifted Children with AD/HD, Asperger Syndrome and Other Learning Disabilities by Deirdre Lovecky 1001 Great Ideas for Teaching and Raising Children with Autism or Asperger’s by Ellen Nothbohm and Veronica Zysk Autism Spectrum Disorders in the Mainstream Classroom: How to Reach and Teach Students with ASDs by Barbara Boroson I have these books in my personal collection and would be happy to loan them out. Thanks Again, Kristi

Holy guacamole!?! Where has the summer gone? We go today to meet the eldest’s teacher; we’re meeting her and taking a tour of the school before meet the teacher tomorrow evening. Oh, we’ll do that one too. The young ‘uns meet the teacher is Thursday. I can’t believe yesterday they were babes, running around in nothing but a diaper, and today they are almost six and eight, starting kindergarten and second grade and running around in their…undies…hey, we live in Texas. It’s hot. They don’t like clothes. Don’t judge.

I’m sad. Happy. Excited. Nervous. Anxious. Proud. All these emotions jumbled into one big ball of a mama. I don’t know if I need to take the child’s teacher a dozen roses, a six pack of beer and a condolence card for having to put up with this helicopter mama. I’m trying, you see, to let the boy fly independently (some). My goal for this year, as a helicopter mama, is to hover just out of sight…keep my radar up but give the boy some room to stretch his own, wonderful, beautiful, fabulous puzzle piece wings.

K

A week ago today, my cousin’s wife lost her battle with breast cancer. Although, she is in heaven now, I don’t actually feel she lost at all. She fought bravely, with grace, courage and beauty. She maintained her faith throughout, and was strong for everyone else. Kathy showed us all what it means to have family and friends in our lives. She lived her life up until the very end. When I got “the phone call” the wind was knocked out of my sails to say the least. I was devastated for Chandon, auntie Mary Jo, Taylor, Taylor’s babe and Kathy’s family and friends. I cried. And cried.

The eldest has trouble with empathy. He loves his family so much that I often forget. He struggled to understand why I would be so upset. After all, we didn’t see them often. I explained my grief the best I could and went about the business of packing our bags to make the drive to say our final good byes.

On the day of the visitation, I talked again to the boys about what was not appropriate. When we arrived, Chandon was greeting people. Accepting hugs, “I love you(s),” and condolences. The eldest, of his own accord, walked up to this cowboy in his starched white shirt and “pink for gray” bracelet, who is more a brother to me than a cousin, and hugged him tight. Joe looked him in the eye and said, “I’m sorry for your loss.”. One single tear trailed down this brave cowboy’s face. He bent down to reply, but couldn’t. Later after the funeral, as we all gathered at Kathy’s sisters, Chandon said he wanted to say something to Joe, but the words were stuck in his throat.

As we were driving home yesterday from my dad’s Joe asked why there had to be cancer in the world. I said, “Baby, I just don’t know.”. My youngest babe says, “Taylor’s baby still has her grandma.”. I say, “No, baby, her grandma is in heaven.”. Chet says, “No, mama. I mean just like we all have Jesus with us always, the baby will have her grandma with her always.”. What you have to know is that we are not a particularly religious family. We (sometimes) make it to Christmas eve and maybe (ok rarely) Easter services. We tend to find God when we are with our family, or fishing, or at the beach, or in the company of our friends…Chet’s had three school years of once weekly chapel that must have really sunken in.

I’m so very proud of my boys for really grasping the important things in life. Sometimes, it takes five and a half and seven and a half year old boys to show grownups how to travel through this inevitable part of life…loss.

We have to wait eight weeks to make sure the graft takes before we can know for sure, but we know now we can do it.

This was one of the hardest times letting Joe go back; perhaps the only time worse was the first time. It. Never. Gets. Easier…to hand your child over to a surgeon no matter how gifted he or she may be. Joe’s goofy juice had not kicked in when they came to take him back. He was not a happy camper. It was all I could do to let (ok make) him go.

The surgeon thinks it went well. For now, he has pain in his hip where they took the graft from. He’s walking well. Still a little wobbly. The swelling has begun as has the bruising. He’s being SUCH a trooper and really trying hard to do what we tell him. I am so proud.

I have some complaints about our stay at the hospital and will voice them when the time comes. I will say this, don’t go into nursing (pediatrics, geriatrics, oncology especially) if you can’t separate and compartmentalize your bad day. My kid that hasn’t had anything to eat or drink (other than the water he just vomited) should NOT have to hear you complain about your busy day and that you haven’t had lunch. Oh and his mama and daddy won’t be happy with you either! Be kind to your patients; if you can’t do that, perhaps it’s time for you to move out of the surgical ward where people NEED pain meds. Be kind when you explain to a HUNGRY child why he is on clear liquids. Just be nice or get another job! Stepping off soap box.

The brudders are happy to be reunited! Both claim they didn’t sleep well without the other. On the way home, we were telling Joe about people from across the globe wishing him well. He said, “I am world famous!”. He decided to write a book about himself; with one chapter dedicated to the best little brother in the world titled “Chet, I couldn’t do it without you.”. Their reunion brought tears to my eyes. Chet kissed Joe in the forehead and got down next to him. They only had eyes for each other…

I am blessed.

Thank you for your kind thoughts and prayers. We appreciate you all!

Xoxo
K and co