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.