August 31, 2014
Thank you for asking about my child! I’ve been procrastinating writing this letter, because there’s so much to tell you and because I’m not often asked about my child. First off, let me tell you I realize every parent thinks their child is amazing and I’m no different, but this one is a little different than some other kids. He is an only child. The reason he is an only child is because I was diagnosed with cancer when he was 18 months old and had to have a total hysterectomy. I wanted more children, but I eventually learned this boy would take all my time and attention, so God had his reasons. He does have a half-brother from his dad that he’s not seen for many years. His dad’s girlfriend also has a son that he thinks of as a brother. My son always wanted a brother, but since I couldn’t give him one, I’m very happy he has a “like a brother” in his life.
Since you’re teaching history, I thought I’d give you some of my son’s history. He was a very much wanted child. He was born by C-section on June 29, 2001 at 8:19 am. He was perfect and the cutest baby. Both his dad and I were thrilled. As time went on, it was noticeable that he was gaining weight, but missing milestones. He wasn’t rolling over, crawling, or talking. He wasn’t growing much in length, but continued to gain weight. At every check-up, I was concerned and was told he was developing at his own pace. Eventually, he was referred to the coordinated treatment center and seen by a team of doctors. After that, he was referred to several doctors that evaluated him and ran tests. It was finally when he was 18 months old, that a neurologist that tested his thyroid. He had congenital hypothyroidism. I actually found out I had cancer and that he had hypothyroidism on the same day (January 18, 2002). As it turned out, he had been tested for this at birth and the test showed hypothyroidism, but when they re-ran it, it came back within normal limits so nobody thought to check it again. This meant he may have some permanent damage, but we were told we wouldn’t really know what it was until he was older. He’s been on Synthroid since that diagnosis and has to take a pill a day every day for the rest of his life.
After the diagnosis and medication started, it didn’t take long for him to begin standing, walking, and even talking. We were so very happy that we seemed to have found the answer and get him treated. At one trip to his endocrinologist, the Doctor noticed that he walked on his tiptoes and referred us to another doctor who noticed his calf muscles were underdeveloped and he walked on his tiptoes because it hurt to put his heels down. He ordered Botox injections in his calves and put him in casts for many months while he was in first grade. He took it in stride. He never complained or argued or cried. He just did what the doctors said and his attitude made it much easier for his dad and me.
After the casts and Botox, he had several more Botox treatments and has had corrective footwear for the majority of his life. It was just last year that his toes made any type of braces or orthopedic inserts unbearable. His calves still are not better, but he can run and jump and play and it doesn’t seem to slow him down, so we decided enough was enough and wanted to allow him to enjoy life without any plastic on his feet.
It was also in first grade that a meeting with his teachers indicated they felt he should be tested for Asperger’s. When I looked at the symptoms of Asperger’s, more lights went on for his dad and me. He has so many of them. He only likes to wear comfortable clothes—sweat pants, t shirts, shorts, etc. Other clothes seem to irritate him. He is easily distracted by anything—lights buzzing, pencils scratching, loud noises scared him. He doesn’t care for brushing his hair or teeth (even though he’s never had a cavity!) or showering. He needs to be made to do these things—usually with the agreement that he can watch a show or get a snack when he’s done. He was also very perceptive. If a photo was crooked or a rug rumpled, he would point it out and get it corrected. He takes figures of speeches literally. This is one I learn daily. He’ll understand if it’s explained, but when he first hears it, he takes it literally. This is also sometimes pretty funny and he understands funny. He is also a little manipulative. If he can get someone to do something for him, he will. This is something I call “management material”, but it’s quite frustrating at times. That’s why his teachers and paras need to have the right combination of patience and toughness. He is capable of doing a lot. He is very smart, but he isn’t motivated very easily. In fact, his dad and I spent many years trying to figure out what motivates him. This is an ongoing struggle and something that works today won’t necessarily work tomorrow, so we constantly have to come up with new ideas to keep him going. He does have a desire to be like other kids, but he knows he’s different, and it’s often easier for him not to try. He does have a few characteristics that do not match classic Asperger’s symptoms. He has a great sense of humor, although he is often funny without intention. He is also very affectionate and loves hugs and cuddles. I wish I could tell you everything there is about him and the Asperger’s, but it’s a complete guessing game every day. Just when I think I have something figured out, I need to change course and try something new. You’re a teacher. You very likely have more patience that his dad and I do for this. He is the only child with Asperger’s or on the autism spectrum I’ve ever known and I’ve found generally speaking, his teachers seem to know about it than I do, but I know more about him specifically, so we try to work together and find something that will work with any given issue.
He will ask many questions. In first grade, a teacher counted how many he asked in a minute and it was more than one per second. This has gotten considerably better. Asking questions is good, but he often does it even though he’s not interested or already actually knows the answer. I’ve often thought this is how he copes with stress.
He does not share his feelings well. He does not often tell what’s really happened or how he feels about something, so his behavior leads those around him to guess. Sometimes, he will say things that aren’t true, but they are quite obviously not true. I handle this most of the time by just nodding or saying ok, but if it’s a whopper, I correct him.
He’s struggled with organization since he started school. It’s part of Asperger’s and he’s always needed help making sure he has everything he needs before going home from school and everything he needs to go back to school. Unless a teacher or someone tells me what he needs, I don’t know. He is not very good about remembering what is done and what isn’t done and what he has and what he’s missing. Organization for him seems to be a real disability and he really doesn’t seem to be able to change this, so he will need help in this area. Lists can be helpful but only for a little while. He eventually forgets to check the list. That said, I always insist that he try at first and as time goes along, we make changes that fit for him. This has seemed to work and his teachers have always been open to make small, simple changes. When he learns he is missing something, it can cause him great anxiety which is very difficult for him and everyone around him. Often, the small changes make life easier for everyone involved (including his teachers and his parents).
He will often find reasons to procrastinate. Some have been continually getting up to blow his nose or sharpen his pencil. We recommend taking away those excuses by putting a box of tissues and small pencil sharpener on his desk. He will continue to do it, but it’s not quite as distracting as him getting up several times in class. Once he sees it’s not accomplishing what it used to, he will eventually stop. I’d prefer he stay in the regular classroom with the other kids as much as possible and he is very capable, but I do understand not wanting to distract other students. He has matured a lot over the summer so I am hopeful that this will eventually subside, but it may start again.
Given the obstacles that he has faced, his dad and I are both pretty amazed at how well he has done. He is quite fortunate to have done as well as he has. We’re very proud of him. At the moment, he would like to be an auto mechanic when he grows up. He’s also interested in building cars. He enjoys going to car shows and looking at different parts of cars. He’s very excited about driving one day and talks about it often. He also loves history. We recently took a trip to Kansas City, MO and he wanted to go to the Arabia Steam Boat museum. He could likely tell you a great deal about the Arabia. He’s been fascinated with the Titanic and ships for several years now. He’s read many books about the Titanic and seen the movie several times.
He owns many Thomas the train collectibles. He knows them all by name and stopped playing with them about 5 years ago. He still wants to buy them and when I ask him why, he says, “I’m a collector.” He has them all sitting out on display in his play room that he rarely actually plays in. His dad is a railroad engineer and he’s actually has been riding in and helping to drive trains since he was about 7 years old. He loves trains.
His bike was stolen this past summer and later recovered by the West Fargo Police Department. It was a feature story in the Fargo Forum as he got his stolen bike back on his 13th birthday. It was quite an exciting time for him and he loved being in the paper and getting his bike back. So many people were very excited for him. Even the Mayor of Moorhead, wrote about Hunter on her Facebook page and sent him a card and letter for his birthday. He is pretty excited about knowing the mayor. He has that newspaper article and I’m sure would be happy to bring it to school sometime to show his teachers. He felt like a celebrity for a day and it did wonders for his self-esteem. Even though he was very happy to get his bike back, he’s not rode it since. He fears it being stolen again. I’d like this to change. I don’t want a child who lives in fear. He has always been very cautious.
He likes to read for pleasure. If he enjoys it, for some reason, he doesn’t think it actually counts for school, so getting him to complete reading minutes has long been a struggle. He will need to be reminded of that.
Once he understands an assignment or concept, he does not see the need to repeat it many times. This has been an ongoing problem in school. So, if a teacher assigns 40 problems and he demonstrates he understands with 10 of them, he will not do 40. We’ve made a little progress with this, but he still struggles. We tell him all the other kids have to do it, but he says, “WHY?!?” This has usually been an issue with math. He does not like math, although he has done quite well at it in the past when encouraged properly. He does enjoy History, so hopefully, it won’t be an issue.
He will not request help from other children. If he forgets a pencil or a piece of paper, he will not ask to borrow one. He will go without. He’s often gotten into trouble at school for this. I remember many times not having these things and school and asking a friend so there was no issue. He will not do this. I’d like to see this change, but I’m not sure how to go about it without getting all the kids on board.
He does not have friends out of school. I’ve encouraged and hoped he would find a friend nearby to play with or go to the park or swimming, but he is not interested. He seems to want friends, but he’s not really interested (or maybe just doesn’t know) how to be a friend. He has been in some type of social skills class since his diagnosis with Asperger’s, but he still does not have friends despite the classes. I believe other kids would consider him a friend to them, but for some reason, he does not often consider them a friend to him. I do not know why this is.
He’s been bullied nearly every year in school and in daycare before school. In daycare, another little boy once pushed him down a flight of steps. He was ok, but sometimes I think that may have affected his view of other kids. He’d never been hurt like that before or since. He will at times go to great lengths to get out of school. I know something is going wrong when he says he is ill in the morning before school. Yet, even though I know he’s not ill, I can’t usually get him to tell me what’s wrong at school. He’s also made himself vomit with his finger and brought his nebulizer to school to get out of gym/recess, even though he didn’t seem to need it at home. We believe he has since outgrown the asthma. After 13 years, I’ve caught on to his tricks. He now must stay in school unless he’s running a fever. He will complain that he’s ill when there’s nothing wrong, or when he has sniffles or a cough. The rule since 2nd grade has been if there’s no fever, he goes to school. I do have a heart, and I will sometimes understand he needs to rest a day. But it’s not often. He has been bullied so much he is now over-sensitive and says he was bullied even when a “bully” did not intend to hurt his feelings. When I can get him to share the stories, I’m able to explain this to him.
Just this past year, he started seeing a new pediatric endocrinologist who noticed his height and weight, the dimples on his hands and short fingers. He wanted to run more tests. He believed him to have pseudohypoparathyroidism. I’d never heard of it either. It used to be called Albright’s syndrome. I’ve since learned more about it, but so far I know his bones in his fingers and toes are shorter (he actually has three toes with no joints), it causes high weight and low height. The endocrinologist referred us to a geneticist and was diagnosed with it (PHP for short). The doctor then prescribed human growth hormone to help with his growth while he’s still growing. He gives himself a shot once a day in the belly. Before we agreed to try the HGH, we talked to him and explained to him that he didn’t have to do it if he didn’t want to. He wanted to. I also reached out online to others that had the condition but weren’t diagnosed until they had quit growing. They all said they’d wished they could have done something. It was a difficult decision to try the HGH, but we didn’t want to regret not doing something if we had the chance. In addition to the HGH, the endocrinologist also prescribed a prescription strength calcium/vitamin D supplement and an estrogen blocker to assist with his growth. He now takes three pills each morning and a shot of HGH in the evening. It’s a lot for a kid, but he doesn’t complain at all. He never complained about the shots at all which is incredible since he’s generally been very difficult with his blood checks for hypothyroidism.
His dad and I have been divorced since he was 9 years old. He lives with me full time, but sees his dad every other weekend and almost every holiday. His dad and I have a good relationship and communication is easy. His dad does not have the same rules at his house however, so there will be times his homework does not get done when he’s at his dad’s for a weekend. I try to get it done those Sunday nights but it can sometimes be late and he’s quite tired. He loves spending time with his dad and wants to go to live with him for high school. I’ve told him we will try it for one year next year, so he also knows about this.
All in all, he is one amazing kid. He’s frustrating; he’s smart, he’ll challenge the way you think, he’ll force you to find new ways of saying and doing things. Getting through to him and watching his face light up when he’s understood something is worth all the frustration. He’s generally very hard on himself and those moments when he feels good about himself are very rewarding. Learning from him has been very positive in my life. I’ve become more patient, more understanding and more tolerant. I truly believe hecis capable of doing anything he wants to—the trick is getting him to want to and having the patience to work with him.
Again, thanks for asking. I hope this isn’t too much. When I saw the assignment, I asked if his teacher knew his mom probably could actually write a million words about him.
Please feel free to email me at XXXXXXXXXXXXXX with any questions or concerns. You can also call my cell at XXXXXXX
He is a challenge. He always has been, but he’s worth it.