Early Intervention.

This morning I had a meeting with Early Intervention. He had previously not qualified for school but, since his diagnosis, they wanted to meet again and discuss our options. The psychologist and the coordinator were there. They said our options were to do regular kindergarten, a private pre-school with some OT, or alternative kindergarten. Since his birthday is so close to the deadline I was not planning on putting him in kindergarten this year. However, they said that their recommendation was the alternative kindergarten this year and then decide at the end of the year if we want to put him in regular kindergarten or 1st grade next year. Im a little nervous because its all day, 845 -245, I was also concerned he would not be pushed academically, because he is on track in that area. Once I toured the school and realized the amount of attention and help he would get, the OT, the help with fine motor skills, and have a full sensory diet, I felt a little better. The kids I saw were writing, spelling, and reading! That made me feel so much better! I do feel a little sad he will be gone all day, but I tell myself if I can spend the next year focused on getting him what he needs and really working on his skills, his life will be way easier and that will be worth it. We will see how I feel at the first day. I thought for sure my husband, who is still not necessarily a "believer", would throw a fit about our son, who is so smart, being in the alternative school, but he was just kinda, OK. Also the psychologist spoke with me after, she said that she didn't think that he had PTSD or attachment issues anymore but that it was mostly SPD, Well I think it was a good day, good news.

Occupational Therapy!

Yesterday we had our first visit with the Occupational Therapist, Carson had a BLAST! They started with vestibular movement, they sat him on the swing and went back and forth. They started spinning and spinning him around, he was just giggling. After they did an obstacle coarse where he jumped off a large mat into a sheet filled with foam, crawling onto one filled with balls, then crawling through a "fish" which was a tunnel made of a stretchy material. He loved trying to crawl out of the fish. Finally they had him roll the barrel up the cheese mat and climb inside, they rolled him down. He laughed and laughed and laughed. Since this was the first session so they didnt work on other senses except his vestibular and proprioceptive. It was great, he LOVED it and when he found out he got to go back he was ecstatic! Cant wait for our next session.

A new symptom!

I am learning that each day brings a new surprise, a new experience, sometimes a laugh and sometimes a cry. At church on Sunday I was teaching, Carson was invited up to play a game. I blind-folded him, for the first time in his life, and tried to hand him a piece of paper to tape on the board. I put the paper in his hand, he couldn't feel it, I wrapped his fingers around the paper and he still couldn't feel it, I finally rubbed my fingers in his palm and he started to cry, he was very very upset that he couldn't feel. I was astonished, I had no idea. I stood in front of everyone stunned and not sure what to do while my boy was just breaking down. I just held him and finished up, he was truly scared and sad. It was heart wrenching.

Again!?!

I mentioned in Carsons history about a day when he was 3 and a half, we were swimming with friends. They all ran to the top of the hill and all but Carson ran down. I taught him that day to sit on his bum and slide down because he was frozen in fear and that was the only way to get him to make it down.

Today at the park we had another interesting experience. A group of kids playing on a hill. They all ran up, at the top they turn and run down. Carson stands at the top, now 4 and a half I fully expect him to dart down the dirt hill. NOPE! He sits on his bum and slides all the way to the bottom. Brand new pants and white shirt, Oh boy! It shows me two things, first we need to work on hills and second, at least he did it and didnt panic....what a day!

A daily battle?

Having a child with sensory seeking and dyspraxia leads to some interesting moments. On Tuesday we were at the park, we have been there a hundred times, he has climbed the toys a hundred times. After awhile he started climbing the ladder to get to the top of the slide. I hear him scream so I run over and he is at the top frozen in fear and white nuckled hanging on. I had to calm him down and explain step by step how to get from the ladder over to the slide. I had to tell him to move his foot then grab with his hand then step with the other foot and finally we made it. He had climbed that ladder, he had made it before but for some reason today his brain just forgot what the next step was, it forgot how.

Then today at Mcdonalds Carson was playing with all the other kids, no problems. I suddenly hear him screaming at the top of his lungs in utter panic. I run over and yell for him, he is at the highest point of the playland and I cant get inside. I ran around and found the oldest kid I thought could fit and asked him to go in after my boy, still screaming. Him and his sister went up and carried him down to the bottom. He sobbed as I held him and when I finally asked him what had happened he simply stated "I started climbing down and I forgot how".

Having a sensory seeking dyspraxic child creates challenges because they WANT to do it, they want to play and run and jump but for some reason, sometimes, his brain just cant give him the steps to figure out what is next. My heart breaks for him in those moments because of the fear he feels, the panic and fear that I cant imagine. I hope his therapy helps him with this.

Diagnosis!?!

When I called me pediatrician about Carsons apparent motor delay they directed me to early itervention. Early Intervention evaluated him and agreed all was well with his development except his motor skills and ability to do puzzles, the pshychologist was also concerned about his anxiety. So I was told he did not qualify for early intervention because he was to smart, but, that there was something going on and I needed to go get a private evaluation. They provided me with quite the list of things to tell the pediatrician.....apraxia, motor planning disorder, bilateral cooderdination delay, and the list went on!

I was back at square one, the pediatrican, a different one than I had seen the year prior, of coarse. At his appointment I told them about the meeting with early intervention and read off the list of possible causes. The pediatrician had Carson write, draw, trace, walk on his toes, walk on his heels, jump and so on. As Carson tried to perform the tasks he would become either frustrated and refuse to try or he would become "silly". When he struggled walking on his heels he started falling down and laughing, I had noted this previously in daily life, I have always said he will be the class clown, when he has a difficult time with a new skill he will try to "joke" it off, intentionally making it a appear he was trying to be funny instead of what was actually happening, he was struggling. Pretty clever for a 4 year old I think. After some gentle insistance and a piece of bribery gum we finally got him to really try and walk on his heels. As he did his left hand curled up beside his chest in a "chicken wing" type motion. The Pediatrician explained that his motor cortex was overloaded and unable to process the information needed to complete the task. He said this could be as simple as a kid who is just a little behind to a very mild cerebral palsey, but that he was in no hurry to "label" my son. So to be totally honest, that freaked me out a little, cerebral palsey, that was one thing I was NOT expecting to hear. By the end he sent us away with a referral to see an occupational therapist for evaluation and treatment of "Fine Motor Delay". I felt a little worried, because of the "cerebral palsey" comment, a little relieved that someone finally listened to me AND recognized what I saw, and happy that we were going to get some help!

We made an appointment for an evaluation and luckily after a cancellation were seen only 4 days after our referral. For the first while we just went over his history, his paperwork, my concerns but after that the questions they were asking me were surprisingly right on the money. I definitely need to mention that during this entire event Carson is climbing onto and jumping off of EVERY thing he can possibly find. Finally after about 1 hour of him NON STOP running, jumping, and being crazy, the OT asked if he was like that alot. My response "I feel like from morning to bedtime he is constantly going nonstop." After about an hour and a half they mentioned that they believed he has Sensory Processing Disorder and asked if we would like to do the testing. WELL YA! As we went over the test, question after question came a sense of WOW, it was crazy how much it hit home with me. I felt like someone was looking into my life and then asking me questions about it. One WOW moment came when she asked if he ran into walls and fell down. Well I nearly fell of my chair as I thought "you have got to be kidding me, there are other kids out there who do that!" That was something that always struck me as strange, you dont really see kids run into a wall and fall down over and over and over, but Carson does. Well 30 minutes later (Carson still non-stop climbing and jumping, swinging and spinning) They gave me a packet that explained SPD, and told me he needed Occupational Therapy, starting with a 12 week program and then a re-evaluation. They gave me books to read and a feeling like, "we can help" and that is a good feeling! I also left feeling VINDICATED! All of those behaviors that I recognized, I was NOT crazy! I had known for along time this is what was going on with my son, finally someone listened and stopped long enough to see what I saw. From the outside Carson is just like any other 4 year old boy, but if you just stop and watch him, look at his behavior, you can see he is a VERY SMART boy who is struggling but is using his smarts and his heart stopping charm to pull things off. So finally we have a diagnosis!

History...

Carson was born at 36 weeks, after a long struggle with pre-term labor, medications and bed-rest. He was 5lb 13oz and 19 inches long, with the softest little head of hair and the cutest little face, his big eyes would melt my heart! From the moment he was born I was taken by him, he was amazing! But from day 1 something seemed off. He didn't seem to nurse correctly, being a first time mom I was dismissed in my concerns but when I finally had them clip his tongue, believing he was tongue tied, they announced that I had been right, he was tongue tied indeed. Regardless of them fixing the tongue issue, his nursing didn't improve, instead of sucking he would use his jaw and almost a biting type movement, pretty painful. On day two he developed a pretty bad case of jaundice and had to be in a bili-blanket. Our next battle came when he was weighed on day 3 and only weighed 4lb 10oz. They wanted to admit him to the NICU but I insisted that he come home and I would have him weighed the next day. Lucky for me I worked at the hospital and they caved to my pleading. I supplemented with some formula and got his weight stable.

I started noticing at about 4 months that he didnt really lift his head very well in tummy time, by 6 months he was not rolling or even scooting, in fact he did not roll until nearly 10 months old. Sitting took him until nearly 10 months. He did not crawl until after a year and when he did it was a strange looking crawl/scoot thing. Finally at 18 months I took him into the pediatrician because he was not walking. Every milestone was late, I was constantly concerned. This was only made more apparent because my friends all had babies within 4 weeks, I promise this was a coincidence, we actually didn't even know the others were pregnant until after they had delivered. We had all known each other in our late teens and met up at random birthing classes. One boy was actually born the same day, same hospital, next door, by the same doctor only 30 minutes after Carson. These girls and I would get together EVERY week, so as our children grew and their kids hit milestones it was painfully obvious to me that something just was not right. It broke my heart when they began to roll, sit, scoot, crawl and walk, every time we were together it was like ripping my heart out. (from left) Ian, Carson, Boston, Jaylee.

My concerns were often easily explained away, you see at 2 weeks he had his first ear infection, by 6 months his first set of tubes. A new set of tubes every six months since then. All these motor skills took balance and when a child has so many inner ear problems, balance just does not come easy. So that is what I held to, it was his ears, right?

Then he had something terrible happen, just 2 weeks after his second birthday Carson pulled a vase off our end table that had money inside. It shattered on his hand and severed the tendons, ligaments and nerves in his left pointer finger. He had plastic surgery followed by 9 weeks in a full cast that covered his fingers and went up to his armpit. This event became the second thing that was used to excuse some of his struggles.

He struggled with self feeding with utensils and doing things like throwing and catching a ball. Things that required both hands, it was easy to explain why those would be a struggle after something like that happened, but to me there was another question, why is he having such a hard time all the time??? Things continued through that winter with no real change.

That spring something reared its ugly head! A sudden change in Carson, he developed anxiety and fear at things that had previously been nothing to him. One example, we live by an air force base, jets are a normal thing. Suddenly even the sound of a plane would send him into a fit, he wouldn't be outside because a plane might come. The thought of bugs brought anxiety and fear. He couldn't tolerate even seeing or hearing a bug without a meltdown. I watched him struggle day in and day out with every day little things that I couldn't understand. I watched the children around him enjoying life while life for him was so difficult, my heart was breaking for him. We went to a psychologist who tried working with us but nothing really changed. While swimming one day the group of kids I mentioned earlier something strange happened, it stuck out in my mind as odd. All the kids ran up a hill, they all ran down, except Carson, he stood at the top screaming at the top of his lungs, frozen in fear. He couldn't even run down a hill, finally I got him to scoot down on his bum. People often told me not to worry, he would grow out of it, that everything was fine. He didn't though, things didn't get better. He starting chewing his blanket to the point it was disintigrating. I had no idea what to do. But once again there was an "explanation" Carsons injury was very traumatic, it was believed he developed anxiety due to all the trauma of the injury, surgery, and other surgeries he had endured. Deep down inside I knew there was something else.

School was a place where we met a little girl who would plant a seed, I noticed from the beginning her and Carson shared a lot of the same mannerisms. For example at the Christmas show all the other kids were singing and performing, Carson and this girl were chewing their fingers. They shared the fear, the anxiety. I finally felt like there was someone who understood. When her mother and I spoke I felt like I was not alone. When this girl was diagnosed with SPD I ran to my pediatrician. I explained the symptoms, the fears, the anxiety and one key component. "He cant do puzzles" Not even the most simple block cutout puzzles, he cant do them and he was almost 4. I was reassured all was fine and he would get better.

Finally my husband and I just instated our own treatment. We just made him do things, we pushed him through his anxiety, his fear. We started tumbling to help him gain confidence and awareness of his body. We bought season passes to the local them park and carried him on rides kicking and screaming. We endured the glaring judgmental stares of others. We bought books about bugs and read them constantly. We decided we would just desensitize him to his fears. One by one we faced them and one by one we made progress. He loved the amusement park. Although new rides brought anxiety, once we got him on he would love them, our motto "if you don't like you don't have to go again, but, you have to try". He was very very afraid of swimming, clinging to me or my husband for life so we put him in swimming lessons, he screamed the whole first session. We took him back, over and over, repeating the class, until he was not so scared. I told him he did not have to like it but he had to do it. He loves to swim now and is improving each time we go, he only needs floaties to keep him up! Now don't get me wrong we were not mean or horrible but we knew we had no other choice, we were kind, reassuring, but firm. We could let him live in fear or not live because it was not really letting him live or we could push him past it. So we pushed and the things we were doing were working!

Through this time, over 1 year, I continued to notice things that seemed off, he was clumsy, uncoordinated. He loved movement but often stumbled or fumbled. He uses his scissors wrong no matter how many times I tried to fix it, he cannot cut for the life of him. I mean literally holding his hand upside down to cut. Things that are so easy for kids his age like building with blocks just cause him to get frustrated. His writing and coloring were not improving regardless of the preschool and practice, things just seemed hard for him. He is extremely intolerant of things, like he lacks the coping skills to deal with the most minor situations. He is constantly running, climbing and jumping, going non-stop, but will suddenly find himself frozen and screaming that he doesn't know how to climb down from a playground. I often say he is a really good kid who is just having a hard time with something. Now at 4 and a half I realized, he would start Kindergarten this year and he is not ready. There is no way I can send him off knowing how much he struggles. I have known from day 1 there was something wrong, and I am going to find out what and get him help, he deserves it, he deserves to start school with the skills he needs, not playing catch up. So I started again to look for answers. Finally I got someone to listen to me.

There are many many other alarms that rang, it is hard to include everything, the most alarming thing was my overwhelming feeling, something is not right.

Let me introduce you to my family

Well I guess I should start with a little introduction. I am 27, a stay-at-home mom who works a friday shift as a Respiratory Therapist to keep my sanity! I currently work in a Pulmonary Function Lab doing breathing tests to diagnose lung disease. I used to love sports but then I got old and realized it was alot more fun when I was good at it. I spend alot of my time wondering how my house got so dirty or how long I am willing to let the clothes sit in the dryer before I fold them. I am pretty average. my life mostly revolves around my family so here they are. My husband and I married in 2004 and we are still happily married, he is a wonderful man who has the capacity to drive me nuts and make me laugh all at the same time, he is very talented at that. I always tease, "we have been married this long and I still kinda like him, sometimes." Which in reality means I pretty much am still head over heels for him and cant imagine my life without him. He runs a small buisness which gives us some headaches! I am a also mother of 2 young, busy, happy, boys, Carson who is 4.5 and Gavin who is 2.5. They are best friends and at the same time different as night and day, which can lead to crazy, silly, and sometimes downright head shaking bizarre moments. Gavin is my youngest, a 2 year old little sweetheart. Diagnosed at 4 months with FPIES, he gave me more headaches, stress, and scary moments than I thought a little guy could. FPIES is Food Protein Intolerance Entercolitis Syndrome, a digestive disease in which if exposed to trigger foods (Gavin could not have even the smallest morsel of dairy protein) the bowels swell and the body is unable to digest ANY food. After diagnosis we went through weekly weights, lots of tears, diet changes, special formulas, added fats, caloric increases, and an unbelievable amount of stress. When we finally got to 8 months and he still only weighed 12 pounds they were going to put a feeding tube in, they tried one more caloric increase and thank the high heavens it worked! I never understood how stressful having a child with food issues could be until he came along. On Nutramigen AA, an amino acid based formula and microlipids until his 2nd birthday, his only dietary need now is pediasure just to make sure we get all the calories he needs. So we now have a healthy happy toddler! He is a bubbly, sassy, but rather small, 2.5 year old. He is most definitely a big guy in a little package. Sweet and loving until youve pushed him to far and then he is a little volcano of you better watch yourself! Hands on his hips and finger pointed he will tell you right what he thinks, and to all my dismay I cannot help but laugh. We always ask him where he is hiding his 'tude, he just smiles and responds with either his shirt or shoes. Carson is a fun-loving, super smart, ball of energy. At 4.5 He LOVES and I mean LOVES pirates, I often feel as though I actually live with Jack Sparrow himself, that is if Jack Sparrow where blonde, short, and walked around poking people with plastic swords all day. He is a boy who has boundless, endless, energy. He has a vocabulary that blows me away. He comes up with the most silly, can't help but laugh, comments. He is a sweetheart and can strike up a conversation with pretty much anyone, especially any grown woman whom he deems cute at the grocery store, and can keep them talking for EVER it feels like. He is a tease and has a sense of humor that at times, I cannot believe. He loves music of all types and loves to blast it to high heaven if its a song he enjoys. He, much like his dad, can bring me to my wits end, and then bring me back again in about 1 second flat! He is something else, I always knew he was extra special and thats because he is, he has SPD. Well thats us, me and my family, pretty average.