How the Journey began

Our journey has been a long one is 8 short years so far. A small background. My husband and I met, got married, and we're 3 months pregnant all in the span of 6 months. WHOA I know!! I had a 3 1/2 year old daughter when we married and 6 months after being married we were blessed with a wonderful son, Hunter Robert Marshall. He was born via planned C-Section at 39 weeks. He weighed in at 8 lbs 4oz and 19 inches long. He was a very "full" baby. The nurses thought for sure he was well over 9 lbs. He's been "husky" since the day he was born. Life at home was tough, I had already had a newborn so I was comfortable with everything that was going on, daddy on the other hand was freaked out! I'll never forget when Hunter was 5 weeks old, I was the maid of honor in my BFF's wedding. The night before the wedding was the grooms dinner, and daddy and Josh (our live in nephew) stayed home with Hunter and his 4 year old big sister. I do believe that night my son had more to eat then he needed in a week. They fed him everytime he cried. LOL. They learned quickly that if he over eats it'll all come back up. I would classify Hunter has a "normal" baby. Eat, sleep, poop. He was a very happy, smiley, cuddly, baby boy. Hunter developed pretty normally.  He was very strong, and held his head up pretty early. He rolled when he was suppose to, sat up when he was suppose to and walked by a year. The things that were different about Hunter is is ability to "keep himself busy" most babies will sit for awhile and play with toys, stare at themselves in a mirror, and babble. Not our Hunter, he wanted nothing to do with toys, he would just go right past them, throw them on the ground and be done with them. His favorite thing to do was be in his walker watching the Wiggles. He loved cartoons with singing and dancing, we had so many videos and he had to pick out his favorites. Sometimes we'd watch that video what felt like a million times in one day, but I had a happy baby and a 4 year old daughter that was content with playing in her kitchen and with her barbies. He loved family dance night. I would turn on the radio and Lexi and I would dance and have fun. Hunter loved to dance along, either by himself or in my arms. He would smile and laugh and we always had the best time. Hunter developed intellectually very quickly. He spoke very well and by the time he was 2 he knew all his letters, colors, numbers and could write the letter H and W, those were he favorite. We still have a fan that has the letter "H" on it, he still swears it wasn't him. I always laugh, because how could he remember doing that at the age of 2 and plus, he's the only one who's name starts with the letter "H".  He continued to develop quick with his smarts. He started preschool at 2 and half, this was the first time he had been away from us, but with the changes in life we needed daycare. We are so lucky to have found such a wonderful center that allowed him to develop at his own pace. He was quite when he was at daycare for about 6 months, the teachers used to ask us if he even spoke. We were flabbergasted since that's all he did at home.  He was a chatterbox and always had something to say.   Once he started talking at daycare they agreed with us, and we all would giggle about when there used to be a "quite Hunter" We were so happy when he didn't save all his thoughts of the day for at home. By the time he was 3 he had finished every puzzle in center and loved the science station.  He was never big on playing cars like the "average boy". We bought him so many toys when he was little, and when his little brother was born we game them to him, 90% of them were never even played with. Hunter had a thirst for knowledge. When he was 4 years old they moved him to the oldest preschool class at daycare. He came home one day and was so mad at daycare, he said why am I even going to school there if they aren't going to teach me to read. That's why I want to go to school, is to read. It was then that he taught himself to read. When he was 5 and in the same class again, he was bored. We knew it, they knew it and it showed in his behavior. We always knew he was bored cause he'd be naughty. Not horribly naughty, but getting into things that he knew he shouldn't. He enjoyed "pushing buttons" if you said Hunter don't touch that, he would say I'm not touching it, I'm hovering over it. He always has a reason for what he's doing and always feels the need to justify his reason.  He would also say things he shouldn't. We call it a lack of filter...everything that others are thinking and know they shouldn't say but want to..he's the guy that will say it.  He started to get in trouble at daycare and needed time outs. He had a keeping your hands to yourself issue and talking out of turn. We had a few behavior issues with Hunter but figured because he was the baby of the family that it would change. He would have emotional outbursts, cry for reasons that we didn't see fit, and yell at others when he didn't get his way. He took out his anger on the family and not at daycare, which we were thankful for. Nothing bothered me more then when others would give me advice for disciplining Hunter. They would always say, well I'd do this, or you should do that. I wanted to scream, Do you not think we've tried all of that out!!! It sometimes made me feel like a horrible parent, I felt I knew what I was doing. I had a child before him and she was nothing like him when it came to behavior. We figured once he got into kindergarten all would change. Hunter was so excited for Kindergarten. He couldn't wait to ride the bus and finally learn something. The children attend at charter school, and we love it there. They really cater to each child's learning stages. When we first moved to Duluth we didn't have a clue what school to put our daughter in, I heard good things about this one and we picked it. The school tests each child in reading especially to see what level they are at. Kindergarten's should test at about a 25 and by the end of the year they should be at a 75. Hunter's first test put him at a 175 (?) I knew he knew how to read, but he really didn't show that much interest in reading as far as books go, he loved to read commercials and he watches moves with the subtitles on. I would always ask him, Hunter how do you know how to read so well, His response...Mom if you know how the letters sound you can read anything.  Hunter's kindergarten teacher was amazing and saw his talent and knew something had to be done about it. The way the charter school works, is you go to the reading class in which you test into. Kindergarten doesn't do this, due to the children just learning how to read, but with Hunter it was different. The teachers met and figured out how to work he's schedule and before we knew it our kindergartner was in a 2nd grade reading class. At first other kids gave him a hard time cause he was younger, but not by much, the class was made up of mostly 1st graders and some 2nd graders. Hunter did miss out on art and music class during his reading time, but we figured it was fine. When they had a music concert coming up they would send him to music for a day or two and he'd know the songs and preform them at the concert. It didn't take the school long to realize that it wasn't just reading that he excelled in. They decided  to give him the end of the year math test for 1st grade. Hunter passes with a 76%, and had never been taught the skills before. They soon had a teacher follow him around for a day or two and see how he was socially. Hunter has always been a bit socially awkward. He doesn't really play well in groups, he has a hard time with other people having input into what they are playing. If it's not exactly how it plays out in his head then it's wrong. We even used to have a food issue, I called it the "broken food syndrome" If his food appeared to have been broken in any way he would refuse to eat it. There was one day when I had so many bananas I couldn't eat anymore. LOL Also, with playing pretend. I  always have to remind him that pretend didn't have rules. The unicorn can be real, and a goat can fly. It's pretend anything is possible. However, it wasn't that way with Hunter. Pretend had rules and they were his rules. If other kids followed his rules the game would continue to go on, if they didn't then he would have a breakdown. Yelling and "spazing" about how it doesn't work that way. When Hunter was 4 he started researching Greek Mythology. That was his favorite past time, he was google it and read it or have us read it to him and then we would act out the stories. This was his kind of pretend. The stories were already there and the "rules" of the story were already in place.
I wasn't surprised when the teacher came back and said he was good socially and had friends.  He's always been way more behaved at school and did his best to "control" the issues. The school spoke to the director of education and they suggested moving Hunter directly to the 2nd grade. They figured why should he go to 1st if he's already passed it. He did pretty good in the 2nd grade, some kids asked why he was there and picked on him a bit, but not for long. There is one particular incident I remember at the beginning of 2nd grade. The kids were in a group and had to pick a name for their group in science. All the kids put in their ideas, including Hunter. He wanted to use everyone's idea and put it into one big group name. Godzillabluedinosaur, or something like that. The other kids didn't like it. They really wanted Godzilla, it's strong and manly was their reasoning. Hunter being Hunter had to point out the fact that Godzilla was a girl and there was nothing manly about her. I wouldn't have know Godzilla was a girl...He said yeah mom she lays an egg and we all know that boys don't lay eggs so Godzilla is a girl. He made a very valid point. His idea wasn't used as the team name and he was mad! I think this was only like the first or second week of school and I was already getting a phone call, cause Hunter was asked to leave class until he could calm down. There was only one other time that Hunter was in trouble that year. I can't remember the details, but I believe he hit another child back on the bus. They have a bully free school and they take the no bullying very seriously.We discussed it at home and it didn't happen again that year. 3rd grade seemed to go much better, the kids were used to having him there and didn't realize he was younger anymore, except when they came to his birthday party and he was only turning 8 and they all were either 9 or 10. Hunter had made some really good friends and always had fun with them.

Our home life was a lot different then school. Going to the store with Hunter from the time he was little was a pain in the butt. I remember calling "not it" with my husband when we'd pull up to walmart for a family shopping trip. The "not it" was so I didn't have to take him out to the car when he did throw a fit. He wanted to be carried everywhere, and remember when I said he was a "husky" boy, this means he wasn't light at all. He always wanted something at the store and it's still that way even at 8 years old. If Hunter can't have what he wants then he's throwing a fit. Not a fall on the ground kicking and screaming fit, but a whining, crying, name calling fit. He has a way to make you feel like complete garbage for not buying him the toy. The thing is we haven't always given into him. He's not one of the "spoiled' kids that gets whatever he wants. There was one time when he was 5 he wanted to be carried thru the mall, It was winter and he was in boots and I was carrying his jacket. Hunter hates winter jackets, he says they make him feel puffy and fat. Hunter is always warm. He loves shorts and flip flops, he refuses to wear long sleeves unless it is a sweatshirt.  I said I would hold his hand and we would walk, he threw the biggest fit I had seen. I dragged him out by his arm, not in the air, but pulling him thru the mall. Once and awhile he'd be on the ground and I just kept dragging him. I've never had so many strangers stare at me, but at that point I didn't really care. I thought if you want to pick up the 60 lb child and bring him to my car then so be it. He would always tell us that his legs hurt and they were tired. I thought how can a 5 year olds legs be so tired they can't make it thru a small mall, and it wasn't just the mall, it was walmart, target, across the house, down the block. Where ever we were going he couldn't walk the distance. We chalked it up to him being lazy and pushed him to walk more. We fought the fight and because of it I rubbed his ankles a few times a week cause they hurt so bad from walking. It just didn't make any sense to me.
Hunter doesn't have the ability to let things go. He obsesses over them throughout the day. I used to always just say..Let it go, it's going to be ok. There was just something in him that couldn't let it go. If he got a time out for something that he didn't do, he wouldn't let it go. We had one daycare lady that wasn't the best and really didn't like that he did that. I told her that he was adamit about not doing it then he didn't...He may be alot of things, but he does not lie. He was only in that daycare of a few months when I pulled him out and put him back at the center. We were all happier about that. He's been that way since he was little, but in my eyes it has gotten worse with the birth of his little brother Jack. Hunter is not happy about being a big brother. He doesn't want anything to do with Jack and this is really sad. Jack can't do anything right and Hunter makes sure to point everything out. Jack can't sit by him, he can't walk by him. If Hunter screws something up then he blames Jack. It's always Jack's fault. His complete obsession with Jack is overwhelming. All they do it fight and argue. They hit each other, kick each other and name call. I can't say that this is all Hunter. Jack knows how to push Hunter buttons and boy does he ever. Hunter can't stand to hear Jack smack his lips together, so what is Jack's favorite thing to do? Smack his lip together that's for sure. We tell Hunter to just ignore Jack, if he can't get the response he's looking for from you then it's no fun to pick on you. This is just not possible. He fails to see the big picture and can only see what's in front of him. He doesn't get that he has 60 lbs on his brother and could really hurt him, when he's swinging his arms around and getting closer and closer to Jack and once he does hit him, he says it was an accident or Jack walked into his arms. He loves to call his brother "that thing" He says get "that thing" away from me before I pull his leg off and hit him with it. That's not even the worst of the words that he uses to "scare" his brother. We can't leave out...Gut your heart out with a spoon or stab your face. It drives me crazy that my son speaks like this. He has been punished countless times and it just continues. Sometimes I just have to ignore it because I do know that Hunter says things to hurt you. It doesn't matter if the issue was something huge like you grounded him from the computer or if you accidentally forgot to bring his blanket to daycare, it was like the end of the world. He would tell you how terrible you were, that there are better parents that don't forget things that their kids need. He always went for the throat. It seemed to be his goal to hurt you. I used to say to my husband, it's like he doesn't realize the words he's saying are hurtful until he sees the look on your face or the tears in your eyes. It was then he would feel awful about what he said and apologize over and over and hug you and kiss you and tell you how much he loves you. Hunter is the best cuddler in the world! If you ever need a hug or someone to snuggle you, then Hunter is the kid you go to. There has been many times that I'm ready for bed and I sneek him into my bed just to snuggle. He keeps you warm and you'll always wake up with an arm around you. He so sweet when he wants to be or when he wants something. That child will do his best attempt at bending over backwards for you if there is something that he wants.
We started noticing that Hunter would get very angry very quickly and without any notice or what we thought any reason. He was blowing up at home. Freaking out and screaming at us. Saying that he hated us, stomping up the stairs, slamming his door, being mean to his brother to the point we couldn't leave them in the same room for fear that Hunter would hurt Jack. His favorite thing to say when he was angry and you tried to talk to him was "don't talk to me" This phrase was used  for everything. Hunter it's time to get off the computer, xbox, feed the dogs, change clothes, don't throw things at your brother. The don't talk to me phrase would always follow along with tears and screams. We didn't know what was going on, it had been slowing happening since he was little. He'd get upset about commercials on cartoons and be inconsolable. Then one day it just slapped us in the face and we realized we couldn't take it anymore and Hunter had to see a professional. It was so sad knowing that something is wrong with your baby, and he's hurting inside and you can't fix it. I wanted to take all that hurt away. No 8 year old should hate themselves or be so angry they get hives. When I took him to his 8 year check up at the beginning of February 2011 I had to fill out a form for the Dr. It asked questions like do you think your child is depressed, do they cry for no reason, do they say mean things. There were so many questions that I had to answer yes to. You don't realize how much is there until it's all laid out in front of you. His pediatrician is an amazing women. I respect her opinion so much, I was so lucky to find her and her amazing nurse. When she read through the form, she said this concerns me, I said it concerns me as well and I really want to do something about it. She spoke to an advocate at the clinic and she took Hunter into another room to ask him some questions. They said it was an early depression study. In the mean time his pediatrician and I spoke about what we could do and we both agreed that Hunter needed some sort of therapy. Hunter passed the depression study, and they said that if he did have depression it was very mild. She gave us some names of different therapists to call and set up an evaluation. The therapist that I chose is a man. I figured it would be best for him to see a man. There have been times that he said stuff was girly cause I do it, and that boys don't do stuff like that. I figured if the advice was coming from a man then it had to be manly. We filed out the evaluation form and went into our first therapy appointment in February.  My main concern at that time was help Hunter with his anger issues, Find out what makes him tick and how to just calm down. We spent roughly 6 months in therapy using different tools and calming methods and discipline methods. Some of the methods worked, and others didn't. At times it was frustrating, I was hoping for magic and it wasn't happening. At one point I came with a list of things that I wanted to cover. I knew that it all couldn't be covered in one session, but these were the "big" things that I wanted to address. At the time our therapist was working on figuring out a diagnosis for Hunter. We had thought Asbergers at one point of ADHD, even a behavioral disorder. None of them really fit completely, but they made sense. Once I brought that list to therapy it's like a light bulb went off with our therapist. He said I have it....His opinion was that Hunter has Integrated Sensory Disorder (ISD). He said that he was going to call his pediatrician and get a referral for him to see an occupational therapist (OT).  This was on a Monday morning and by Tuesday afternoon, we already had an appointment with the OT for an evaluation. I started researching this ISD like crazy. I had never heard of it before, to me it was foreign. Once I started reading about it then it started making sense.

There is TONS in information on ISD...I copied some info about it and a link to a website that I like on the "What is ISD?" Page...

We had our evaluation about 2 weeks later. When hunter was being evaluated by the OT, we were filling out another questionnaire. There were so many questions. We had to categorize the questions by never, rarely, frequently, often and always. This is when things started to make sense. As we were filling this out there were things on there that we would have never thought were an issue. Things like when you say his name does he just turn his head or his whole body? Well he turns his whole body...Things like how does he do with silverware. This has been an issue in our house. Hunter would rather pick up mashed potatoes with his hand then use a fork or a spoon.  This was always an odd behavior for me. I couldn't figure out why he just couldn't use his silverware like a "normal" person. I had been giving him the silverware with every meal since he was a baby. Thinking back I don't remember him using it all that much then either. I've tried to show him over and over how to do it, but it just doesn't work for him. He gets food all over the table, it misses his fork all together, so then he picks it up and puts it in his mouth, or my favorite. He'll pick it up and put it on the fork and then put it in his mouth. Lets not forget that he can't stand the feeling of anything on his hands so then he proceeds to wipe his hands on his shirt ASAP. His clothes are always so dirty, it drives me crazy. His 4 year old brother makes less of a mess during meal times. Since we have figured out that this is part of his disorder, I'm a bit more relaxed on it, but it still gets to me. I know that I need to be more patient with him, however your patience runs out when you are dealing with it everyday over and over. There's always a breaking point, when you just can't take another out break, or hurtful words, before you are just hoping for bedtime so you don't have to deal with it for another minute. But then there is the deaded bedtime....Bedtime SUCKS at our house. Hunter can't calm down to fall asleep, he needs to be cuddled or his ankles hurt from the days activities, or he needs his back scratched to fall asleep, it helps calm his nerves from the over stimulation of the day. My husband and I never get a chance to be alone. As I type this, it's 11:00 at night and Hunter is still awake. I was just up rubbing his ankles from all his bike riding today. He's learning how to ride his bike and is very excited about it. I know most people think that by 8 years old kids should already be doing this but this is Hunter we are talking about. There has always been a "reason" as to why he couldn't ride a bike. He didn't like the seat, the handle bars were weird, the neighbors were outside and could see him trying, you're holding on to the back wrong. There is always a reason and with that reason becomes frustration and then comes the yelling. It reminds me of when he was 5 years old and in hockey. He was so good, once he learned to skate he was so fast, but there was always a reason why he shouldn't go. His feet hurt, it was cold, his socks were wrong. Every practice was a battle. I made him go every practice, this is what he wanted to do and I paid a lot of money that we really didn't have do he could have what he wanted. An example of the missing filter. They were taking hockey pictures, and Hunter thought the photographer was pretty, in front of everyone he says "hey dad when you divorce mom you should marry the photographer, she's hot!" Now everyone thought it was so funny and so cute, but I wanted to crawl in a hole. Seriously what child says stuff like that, well Hunter does, that's who. Needless to say that was our first and last year of hockey. Knowing now what I know life would have been so much easier. I would have known that his muscles weren't developing correctly like other kids his age and that's why his legs, ankles and feet hurt so bad. The ligaments haven't stretched properly. I would have known that Hunter needs to be explained everything and everything has to have a reason behind it and you have to make him believe that it's his idea. Does that mean that life is easier now because I know what I know about ISD? NO, not at all. It means that I have answers to some of my questions, but not the magic tool that I pray for every night. I still get frustrated when I have to tell him over and over again to get off the back of the cart in the grocery store. When I have to drag him up to his room after he's told me how terrible I am when he's having a rough day. When in public everyone thinks he's hilarious and I'm just crossing my fingers that he's not going to do something to crazy. People say oh I just love him he's so funny and cute and I have to agree with him, however it's not funny everyday. He talks for the sake of talking. He'll talk to complete strangers and just keep talking. People don't even know what he's talking about half the time, but to him it's very important. I sometimes feel like I have to explain to people that he has ISD, so they just don't think he's crazy. It's like if there is a label for something then people except it, if they don't know that label and can't tell because your child looks "normal" then they think bad things about the parent. Like why can't you control your child, why do you just let him talk like that, my child would never talk like that....The list goes on and on and this is when I feel like a bad parent. I know in turn I am an amazing parent. I have toughed it out for my child. (who wouldn't) I have tried everything that I know I can, I have held him in time out for 45 minutes because he wouldn't say he was sorry, i have cuddled him all night long rubbing his ankles because they hurt. I have had to leave work to bring him to his appointments. I am the one that wraps my arms around him when he's so over stimulated that he has hives. I am the one that stepped up to be his cub scout leader cause without me they wouldn't have a den. I am the mother that works 3 jobs so my babies can have everything they need. I am the first one to discipline him and the first one to laugh at his silliness. I am the mother that asks questions to the doctors, the one that reminds the rest of the family that he's an 8 year old boy with ISD and just needs to be cut some slack. I am hard on him when I know he's not trying. I will dry his tears with my shirt when he's sad. I am the mother that can see her son being picked on and just quietly gets him to do something else before he realizes that the kids aren't actually playing with him, but they are playing against him. I am Hunter's mother! He is my life, my soul and my baby!!