Dacotah had the flu and ate a new food

Friday a week ago through last Friday Dacotah was super sick with the flu. Normally it's not a big deal for his sister we give her some homeopathic remedies and her symptoms go away and she's fine, no fever, no fatigue, etc. Sadly for Dacotah we learned that would not be an option. Why? Because he refuses to take any kind of medicine by mouth. I have heard every suggestion in the book, I have tried every method I have heard and read about. Trust me been there done that. Unfortunately, by some ways unknown by me, he can spit it from out of the depths of his throat all over him, us, and anyone nearby. We have dealt with it ANY TIME he needs anything orally.

Unfortunately the only fever reducer that comes as a suppository is Tylenol. Against the flu it has about a 3 hour time span before Dacotah's temp started to raise again. The alternate would be Ibuprofen which is a oral medication. Reread paragraph one if you want to know how that went. So long story short he maintained a temp of 102 for 5 out of 7 days. The other two days his temp was 103-104.1 We kept him in nothing but a pull-up, and showers/baths multiple times throughout the night.

Giving medicine is a royal pain yes, but the hardest part for me is knowing something has to be hurting and he doesn't have the words to tell me or his daddy where, what, or how bad it is. The first 3-4 days wasn't awful, but days 5-7 he would say mommy night night any time we would bring him out of the bedroom. If I left the bedroom he would whimper but was too tired to scream :( Thankfully two rounds of osteopathy and he was on the mend. By Saturday he was back to semi-normal, no temperature and his energy level was around 75%, by today he spent 2 hours at the park with Daddy J (my dad) playing until he was worn out and ready for a nap.

His OT and PT was cancelled last week because he was sick, so when we go this Thursday (it was bumped due to spring break) I am going to have them start working with us on how to get medicine down. I'll work with his speech therapist to see if we can have cards specifically for "being sick". I am glad he talks but the things he talks about, doesn't help us understand him or what his needs are.

WE HAVE  A NEW FOOD, he devoured six LARGE strawberries yesterday. He took a look at a fruit and veggie tray and ate every strawberry in the box. Hey I'll take it. I think that's the first new food in six months at least. So MAYBE just maybe we will have another new food in a few days.

I think I have given up the idea of going to Maryland. There are two reasons, one the lady who has a lot of experience with his Klinefelter's isn't a "doctor" She has a Ph. D. in education so the insurance won't pay for it, nor reimburse the $1300 for a visit split over two days. The trip is nearly 10 hours to drive and Dacotah does not do well with, so I'm looking at transferring him from UVA in Charlottesville to UT for the speech, Klinefelter's and autism. He was super sick last week so I'm hoping by the end of May once I graduate college I can turn full attention on finding a new group that can help.


Oh before I forget, we took Dacotah to the local egg hunt. The looks we got for arriving early but we did stay in the vehicle until it's start time. We were asked if we wanted to join the bunny for his walk from the local library down to the park. We declined without giving a reason. But honestly Dacotah would not have tolerated the crowd, the music, or the rabbit. :) So we waited until the split up the age groups and took him out on the field. He and I walked halfway across before I sat him down to find the eggs. He picked a bunch up and put them in his basket, then motioned for me, I told him I couldn't so he continued picking them up and had a lot of fun doing so. It was a lot different as last year he wanted nothing to do with them. Thanks Ryan's Toy Review. It helped a lot.

Frustrations from a parents point of view

Another 2 weeks has gone by, how is that even possible? In those two weeks a lot of things have come to mind, every scenario, the present, the past, the future, it's all in there. So here's a few questions I have asked myself.

There are days when Dacotah other than not talking as much as another 3 year old, errr or a 2 year old for that matter, seems like a normal child. Slightly tall for his age, super loving, and loves playing outside. I question in my mind making more PECS cards to see if that would give him another communication boost as he has learned the words for the first set I made months ago. Another mom suggested the proloquo2go for his tablet, I hate the price, and I'm afraid it will make him to where he won't want to talk to us. He will just push a button that talks for him.

Going to playgrounds, he loves it, his sister loves it, I hate it. Why? Because I cannot help but notice how far behind he is. Yep, I find myself constantly comparing him to others. I don't mean to, but I do. I hear them say "hey mom, watch this" "can we go get ice cream when we leave here". I'm not talking about the 5-8 year olds, I'm talking about the "normal" kids who are 2-3 years old, his age. I get depressed and sad and there are days I wonder when his time to talk will be. Yes, he is making progress and yes it is painfully slow, but it's still hard.

I have come to accept that it is okay for me to question, to be upset, and to wonder what is to come. It doesn't make me a bad parent or a bad mom. It just means I care and I want what is best for my children. That is not wrong of me.

If there was anything I wish people would stop saying is "I'm sorry" I hate those words. It's me, it's personally a problem that I have, because I don't understand why they are sorry. They haven't done anything wrong so why apologize? I wish they would stop saying he's quiet, he's shy, he'll grow out of it. People listen to me when I say he is 3 YEARS OLD, he is on a 2 YEAR OLD level. That means he is 1/3 of the way behind his peers who are the same age. He may not grow out of it, this may be his "marker" He may always be 1/3 behind and that's okay, nothing to be sorry about. He will talk to you, but it has to be on his terms in his own time. He is not shy, that's not the reason he doesn't talk. Let him approach you and he will smile and say "this" as he shows you something. He will say Look and point to what it is he wants you to see with him. He gets excited.

What I wish people would say.... I wish people would ask randomly how we are doing, instead of pretending we don't exist. That has been super hard for me. Montana's friends ask her why they have to come inside to play, or why they have to include her brother when she's outside playing in the yard. I wish they knew how happy and excited he is to join in their game of hide and seek. He tries to count with them and he loves to seek. I would love to go out to eat with our friends from church, but we can't because it's hard enough cramming our food down fast enough when it's just us with Dacotah. But did you know, we enjoy having friends over for dinner, so Dacotah is in his "safe environment".

I have contemplated going to Maryland in June to see the genetics doctor regarding his genetics. After da da (Dacotah's word for daddy) and I talked, I think we are going to try to find a place closer to home towards Knoxville. It's 2 hours vs. 10 hours, and it's covered by our insurance instead of $1300 out of pocket. What I am hoping to get? Well it's like I explained to someone today they have developmental guides for premature babies, maybe someone could tell me what "chart" would be best so we know where best to push Dacotah, where he is within normal limits, and where we need to back off.

I was able to make a contact with the local autism group. They meet in April so I'm hoping to attend that meeting to find out what resources are available to us where we live. Which sadly isn't very much. The closest respite care is in Johnson City, not sure how that works, it may not be for us, but it will be good to connect to see where what direction we need to go.

Tomorrow starts "Autism Awareness Month" I will leave you with a quote "If you've met one individual with autism, you've met one individual with autism" -Stephen M. Shore

The above quote is so true and soooooooo very frustrating. There is no guidebook, this a fly by the seat of your pants, drop back and punt, do the best you can.

Great update

Dacotah is jumping, for those of you not on our FACEBOOK page. Dacotah is officially jumping with two feet off of the ground!!! He is still trying to talk, but it's about things he wants/needs or just things that are of interest to him. It's small talk but I'll take it.

He is also allowing us to read to him. Granted we cannot get through a full book (including toddler books) but he is showing some interest FINALLY. I found him some books at a local consignment sale that says "Let's go to..." and it has different places such as school, hospital, doctor, playground,etc. He likes them enough to line them up, so I'm hopeful he will let me read to him. I may change up his bedtime routine slightly and try reading before bed.

Today was his last day to see Dr. Los, his endocrinologist. He was very pleased with the results and how much Dacotah is able to do since he started the T-shots. :) I too am very pleased and was glad to find a specialist who was open to new research. It has made a HUGE difference. He doesn't have have see endo again until he is somewhere around 5-8 years old. At that point a decision will be made on whether a second round is a good idea based on updated research in 2-3 years. We know he will need it for puberty so a middle stop to see would not be a bad idea.

PT, OT, and Speech all saw him in today's visit. It was Chaotic for this momma, but Dacotah was a champ. His attention span is 1-2 minutes which is typical, but it drives me crazy that he goes from one thing to another to another. They are slowly working on increasing that. But in the meantime his school therapist are amazing. I love them all. In another month I will start the discussion on summer therapies and see what I need to have in place for OT and PT. Speech is out of the question, but I am sure I can find us stuff to work on so he doesn't lose what he has gained.

Biting... oh geez.... That was brought up today. He loves to bite especially when he is frustrated. Montana blocked him from going into the kitchen and he bit her on the stomach. Sorry I can't say I blame him. Sad but true. She loves to irritate him. I am hoping in a couple of weeks I will know the best way to approach her and we can find a middle ground.

Travis and I have started going out individually to do things on a weekly basis. Sometimes we take Montana along, sometimes we go to the store or something without either kid. I love these moments. I love my family don't get me wrong, but I need time to reset so I can be more available to them as they need me. Like the old saying goes "you can't fill someone else's cup if yours is empty".

I would like to eventually find someone we trust to watch them for an afternoon or so a month so we could go out for the day or even overnight. I'm sure Montana would like to go somewhere with just mommy and daddy without bubby sometimes too. This is something we haven't done since Dacotah came along.

Anyway let's get ready for class. I cannot wait until May.... Graduation is in sight and then I am done for a very very long time.

Monthly update coming to the realization of what is...

Dacotah's party was anything but a nightmare. Mamaw and Papaw Pickell came up, Aunt Ashley and Cousin Caleb, Jenny and our two godchildren came over, oh and my dad came too. I thought the small party would make it easier for Dacotah.... My Facebook post says it all...

  "My child ran off to be alone during his party. It was immediate family, in his own home. He absorbs into his own shell. He comes out briefly and I cherish those normal moments. But, he never sleeps without being medicated (and nights like tonight that doesn't phase him). When I see a child who is younger than him interact, answer questions, sleep like a charm.... I can't help but feel envious. I try not to its just I guess I am fighting my gut instinct and it makes it that much harder."

For the record for those not on facebook, he didn't go to bed that night until after 2AM. 

The stemming responses are getting worse. He turns the lights off and on. He scratches himself constantly until he leaves marks and scratches that bleed. He lines things up. He screams. He throws himself onto the ground in a massive heap. He bites himself out of frustration..... oh the list could go on. 

I had fought over and over in my head and I came to the conclusion today. That 3 doctors/specialists, 3 therapists, and 2 alternative medicine people cannot be wrong in their diagnosis of Autism. I let the argument go off in my head hoping the school psychologist was right and all of us were wrong. I am resigned to the fact that the "label" helps me understand the amount of patience and understanding we are going to need. The biggest downside unfortunately is where we live. The support system isn't there. No one is open to their child diagnosis, so it feels as though we are alone. Maybe my opinion is wrong and we aren't "alone" but I notice how we aren't invited, how no one stops by, how soon my dad leaves as soon as he walks into my house. It's lonely. I think maybe that is what has made this 10x worse for me to accept. 

Daddy says it best when he says "it will be a challenge but he is our son and we love him and do anything for him. Eventually , especially as smart as we know he can be, he can live a somewhat normal life."

The bottom line is he is our son. There are going to be the good days where it is as though nothing is wrong. Which will make the doubters doubt, including his mom. Then there are going to be the days where the realization of what is, brings me to my knees and I cry for the little boy we call our son. But I will not give up hope. I won't stop writing the blog, I won't make it full of happiness and joy so people will read it. I'll put our feelings into it. Maybe if just one other momma out there reads it she knows she is not alone. 

Montana broke my heart into a million pieces when she said she didn't understand her brother. Obviously kids her age realize Dacotah is different. Her friends notice. I just wish I could tell them that being different is okay. Here is why Dacotah wears braces and tight fitting shirts. I can't imagine how scared she must be inside. Getting her to say anything about how she feels is proving very difficult. Nope before you ask she is not forgotten. I've just got to find her the right support that she needs so she can open up. 

The screaming in the car gets her the worst. There are days we can drive for hours and Dacotah is 100% fine. Then there are days like recently where he screams nonstop over 30-45minutes. But the smile and laughter he provides makes it all quickly fade away. 

A Letter to my Big Sister

Obviously Dacotah did not write this himself, but I was approached by his big sister last night to which she said "it's hard because he has autism and I can't and don't understand him". So I tried to address the things she sees and hears from her brother's potential point of view. It may be beneficial for others too, hence why I decided to share it on his blog.

Dear Sissy,

I wish I could talk so I could help you understand me so much more than you do already.  Mommy told me you don’t understand me because I have autism and developmental delays which keeps me from talking to you the way you wish I could. Trust me I wish I could talk to you in a full sentences the way your friends talk to you every day. But God had a different plan when He decided to make me.

I am not stupid, despite what some people may think or say. I still have feelings just like you. I get angry, sad, hungry, upset, loved, just like you do big sister. I can’t talk in full sentences, which makes me very frustrated and I scream sometimes for a minute until you figure it out, sometimes for longer because mommy and daddy can’t understand me either. These things can upset me too because I feel like I am stuck and cannot tell you what I feel inside. You are not alone in not being able to understand me because I don’t understand it all either. I do understand what you say to me or about me, did you see I went to pick up the ball you asked me too, or I went to hide during hide and seek?

I know you get upset because it seems as though mommy and daddy and the therapists spend a lot of time focused on my needs. But did you know they spent a lot of time one on one with you when you were small? No, you didn’t need the therapists like I do, but that’s because God made you special too. He made you with a heart full of love for others. You have a big heart and want to help people and that is an amazing super power that God gave you. Did you know some people don’t love at all?

Well just like you I have a special gift too, I can hear and see things that you see and hear differently. The sun light that shines down gets into my eyes, it is soooo bright that it makes my head hurt and all I can do is scream because I can’t tell you what’s wrong. Did you hear the rain outside on the roof, while the cat scratched the carpet, and riley barked to go outside, or the hum of the fish tank, and my tablet music going all at once? I bet you heard just my tablet because it was the loudest. Because of my special gift I can hear everything all at once. For someone my size that is scary and so I freak out and cry. Do you cry when you get scared?

Did you know I love it when you and your friends play with me instead of ignoring me? Imagine yourself in gym class and the other kids get picked but you have to sit out. Does that make you sad? The same thing happens to me. I love to play with you even if I can’t talk to you. I enjoy the moments we get to play together and I wish they were more often. I love when you play ball with me, when you play hide and seek. Did you know, you could even be a part of my team and help me learn how to talk to you and everyone else. Wouldn’t that be super?

I know you don’t understand why mommy is tired all of the time. I know so I will tell you, last night she woke up 3-4 times because I kicked her. I woke her up wanting water. I woke her up at 3am because I wanted to get up for the day. So she gets up too even though she is tired because I am not big enough to be up by myself yet. You are a big girl and she doesn’t have to get up with you unless you are sick, but I bet if you needed her in the night she would sit up with you too. Mommy has to give me medicine that helps me sleep, I have a super natural ability in that I don’t have to sleep as much as you do. Which makes everyone else super tired and very cranky.

There are some things that you do to me that makes me very upset, like when I tell you no when you try to change my shows on my tablet. When you tell your friends no, do you get upset when they don’t? Same thing goes for me. I don’t like being touched, so if I pull away from you please leave me alone. Don’t pick me up if I am screaming no no no. If I want a toy that you are playing with, could you offer me a different one, or perhaps could I play with that one just for a minute, I promise I will give it back.

You know what else? I know you wanted a little sister to play with. I have heard you tell mommy that several times. God decided to send me instead of a sister, because he knew we would grow up to be best friends. He knew you could give me so much love, because of your big heart. So He personally selected you to be my sister for all my life!!! So in the moments when you are angry and frustrated, and it seems like I get all of the attention, remember that you are important too. 

You are my BIG SISTER and I LOVE YOU so very much. I cannot wait until I can talk to you so that you understand me, but in the meantime we can play together, and I can learn, even if it takes me a little longer, we can get there one step at a time.

Love your little brother. 

The transition to IEP begins

While I can't say I am overly excited about losing Dacotah's current OT, the time has come that in 11 days he will transition to his IEP goals. I am nervous and excited. Excited for the progress he has made, but nervous for what he is doing/not doing that he should/shouldn't be doing.

I'm going to be honest, I am going to miss his OT Ms. Mel, or Ms. Moo as Dacotah loves to call her. When you get use to seeing someone every week for months, it's really hard transitioning to a new OT with new thoughts and ideas. Not necessarily a bad thing, but I have always had an issue with change. (Unfortunately at age 33, it has not gotten better). So next week will be her last "official" visit.

Thankfully he gets to keep Ms. Pat, who does his physical therapy because she is part early intervention but also works for the school, so that is one change we don't have to transition to.

He will have Ms. Courtney for speech and Ms. Kelli for OT (OT through school starts in March when Ms. Kelli gets back from a leave of absence). I met Ms. Courtney today and it's a sigh of relief when you meet someone and you can tell they honestly care about your child. Instead of diving right in with Dacotah she is going to introduce herself in two weeks with Ms. Pat during his PT visit and let him warm up. She asked a lot of questions about what we had been working on, what we are currently doing, and what our goals are.

He will see Ms. Pam for his developmental goals at his preschool.

Everything is set up for once a week every week until summer. At some point before I am making a list to give to his physician's to see about having extended summer. We have come WAY TOO FAR with progress to go 8-12 weeks with nothing. Granted I am a hands on parent and we could do it, but the support system is much easier with everyone working together.

His talking is starting to mumble again. Maybe it's random, but it seems as though 3 weeks after the last T shot is when he stops talking as much. Maybe it's just the full moon. But in any case it is a week of frustration when he just echos back or just says what he wants. Getting him to focus for more  a few minutes the past week has been a total loss cause.

I have said for a while he lines things up. A LOT, this is not a one time and I'm jumping to the conclusion something isn't right. This has been going on for years. At least 2 and it's not improved. I originally thought it was typical child play. But I have had several mommy friends both old and young who state their kids never did that (especially at his age) nor at the rate he does it, it's one of the more clear autistic traits that he has. Today after his appointment with endo for his third shot (yep it's already been 3 months), I took him to the bookstore. They have board books that have wheels and look like cars. He lined them all up once, then drove them to their new location and lined them up one at a time.

While at the bookstore I did find a book about Autism, just flipping through some of the pages, there are signs that are there and they are prominent. But you know what the goal is to give him all of the help and support that he needs, continue working with him to develop his vocabulary and work on the social skills. Thankfully we have a great start with his receptive language being right where it needs to be.

He stopped saying his colors, or I should say he stopped correctly saying the right color. I am hoping it's just a phase and that it's not "lost" again. I wasn't as structured with him the past week with our trip to Indiana followed by craziness at work. So we need to get back with that this week.

So in the meantime let's go plan his third birthday party, it's going to be this coming weekend with just his grandparents, aunt, and cousin. The smaller the group the better it is for him. The best part is we can have it at home where he is comfortable and he can come and go as he pleases. He can have a small lunch party with his school friends on his actual birthday and then enjoy all the extra attention we can give him that day. (As if he doesn't get enough already) HA!

Leaps and Bounds and almost 3

It's hard to believe it's been a month since the last update, and a month from now he is going to be 3 years old. What's more incredible is seeing the DRASTIC change in his tone and speech in the past 6 weeks. So here's a back date.

To date he has now how to treatments of testosterone injections through the endocrinologist's office. All I can say is WOW WOW WOW WOW, I wish I had known about it two years ago. But.... PT, OT, and us are all astounded that he's talking more, he has more upper body control, and is crossing the midline when he plays. The weak muscle tone in his back and shoulders is drastically improving as well. It is our hope once the third shot is done he will be good to go. Though Dr. Los did say he is not opposed to giving him four doses if he needs it. Kids with KS do not make enough Testosterone and that causes the poor muscle tone, which adversely affects their speech.

This week was the FIRST TIME ever he was able to say Truck. He would try but would end up blowing air out because he couldn't make the word. Now he has no problems. I picked him up from school last week and asked if he wanted to go home or to the bank. Plain as day he says "bank". He is making progress and I am super thankful.

I still get shell shocked when we go out, and there are younger kids talking in full on sentences and he still struggles to put the words together. I realize we have come a long way, but we still have a ways to go. BUT that's not going to stop us. We will get there.

Travis and I made him the appointment to go see Dr. Sprouse in Maryland in June. Despite the expense we feel that it will provide us with a lot of insight in what we need to work with him on, and what we can expect in the long run with him as far as how the genetics will come into play.

We modified the order for his compression vest to a TLSO but we can take out the rigid supports and the insurance will cover it. I'm hoping it will be ready when we go back to the Orthotics guy next week to pick up his SMO braces. He has outgrown his other set. (they are suppose to last 6 months, he barely made it 3).

We had an updated IEP meeting with the school here and he qualifies to for OT as well. So in March he will have Speech, OT, PT, and developmental therapy. They increased his PT to once a week instead of every two. We also applied for him to have a one day a week Head Start visit.

Going out to town with him has gotten sooooooo much easier. Ha we went out to eat one day a few weeks ago and the lady was clearing the tables and scooted a chair, I was waiting for him to freak out. His head shot up and his eyes grew wild as he tried to locate what made the noise. We reaffirmed that he was okay and he was safe, a few minutes later he was calm as though nothing had happened.
Our van DVD players died, so mamaw as able to get him a new one with a bigger screen for an early birthday present. He ABSOLUTELY loves it.

We will update again when in a few weeks.