I wonder if I said I love you enough times today. I wonder if I gave him the right amount of food. I wonder if I held him enough or even said the right words. I lay next to him, as he is fast asleep and he has his hand on my arm, thinking if I move to fast will he wake upset again or will he be okay. Am I bringing comfort to him now as he softly makes sounds? What can I do to help him how can I make it alright? What can I whisper in his ear that he knows I haven't taken flight? I ponder so many questions, so many nights but today I know I said I love you at just the right time because my baby said it back.
I hear the words "my kid is going back to school tomorrow" and I think does their child know they are going to school. I think does my child know he is in school. I have to wonder what Owen really knows. I know that it seems like he is happy so I guess that is all that matters. It seems like he is learning. And it seems like he wants to go back the next day. I wait for the day when he says to me "mom, I don't want to go to school tomorrow" or "mom, I can't wait to go to school tomorrow". I will take any answer just to hear his voice. His VOICE.
TANTRUM ALERT: This is a follow up to the "ca" (I believe veggie straws) status. Owen is on second breakfast right now. He already had waffles, applesauce and almond milk (no dairy for Owen). He asked for "mulk" but I gave him water. In three year old tantrum style, the cup comes flying over the gate into the kitchen. With that move successfully ignored by me he went on to stage two of the tantrum. He took one of his big toys and laid it down on its side. Realizing it did not make enough noise he picked it up and dropped it so I could hear it. Again, I successfully ignored this, so phase three began where he laid on the floor, rolling around, saying "ca". I tried to give him more of a breakfast bar type thing and, well, you guessed it, he didn't want it. So the cries for "ca" continued. At this point my guy has water he doesn't want and a breakfast bar he doesn't want, I was interested in how this would play out. As I stayed in the kitchen to start some coffee, I look over at the thrown sippy cup on the floor and pick it up, with that Owen says "mulk peas" and I promptly get my boy some milk. After I give him the milk he says "ca Mooooor" and I get him some veggie straws. I would say that this was a group effort for second breakfast and I'm quite pleased.
If veggie straws are what will get Owen to ask for things I'm all for it, I bought six bags yesterday. Okay, so that may be a few bags to many but my boy is asking for things and interacting with me to get them. Albeit a little tantrum filled but he is making such progress. Seeing him all big smiles, holding his sippy cup full of mulk and eating his ca, this momma is happy!
Small steps, big victories and huge milestones!
The mommy meltdown was in full force. I don't really think mine was a tantrum, I think it was a meltdown... So we sat.
Today, I sat outside of Big Lots with Owen, crying. Me, not him! I knew the crying would start when we got inside the store. Him, not me! Well, maybe this time both of us.
The feeling of knowing one thing, hoping for another but yet the knowledge is there that as soon as we step foot in the store the same thing is going to happen that has happened every other time we step inside the door. Meltdown, him not me. Mine are in the parking lot. Why am I here? What do I really need? I think, I can come another day. I think, no go in.
Go in, we did. Owen actually sat in the cart. He doesn't always do this. I thought that's a good start. I thought this might work, we just have to get through the next door and this trip will be on... We entered still no screaming. We turned down the first aisle and the expression of his face changed. I could see it wash over his face. I suppose if I looked at my face I could see it wash over mine too.
I really did go for a purpose, gluten free things and I was trying to find these blocks to work on a project for Owen. The minute I went down the second aisle I was holding him. He wiggled himself up out of the seat and I knew there was no chance he was sitting back down. I thought ok I'm holding him we've got five minutes we can do this. He screamed, silently I wept.
Down the last aisle we go, at this point we had been in the store just a few minutes. I'm still amazed at the stares Owen gets, I get, for his outbursts. I rushed thinking if I keep holding him we might be able to keep looking. I saw he was still very agitated so I put a few things in the cart and went to the checkout.
Luckily a clerk was just opening another lane so we were able to checkout quickly. He actually stood next to me for a minute. I was quite surprised by that. Maybe it is because he could see outside now. The clerk tried to talk to him and he totally ignored her. I stand there going over in my head what to say to her, use your words Lynn, I think. Then I think use your words, what words am I suppose to be using? "He has autism." Why do those words sound foreign to me? Why do they still sound weird coming out of my mouth? Why do I even have to explain? And the answer is I don't but yet I often do. I'm here to promote autism awareness right so I say he has autism. Then that sets in a whole new wave of questions that run through my brain. So I just say thank you and we both walk out the door crying.
And I think I love this little boy with all my heart, I wish I knew how to take him to the store so it would not be so overwhelming. I take things with us, like his tablet and it still doesn't seem to distract him unless it is at a moment he can be distracted. I think I shouldn't take him to the store but sometimes I just have to or want to try or think it's just something quick. Well todayis done and tomorrow is a new day. I will put on my smile and try again. If I just knew what was best I would do that...
The struggles of a sensory baby are hard and confusing. Why at night or during happy times or even sad times does my baby have to struggle so?
Owen lays down to go to sleep and he can't stop moving. He can't stop fidgeting. He can't stop...
I think one more sippy cup will calm him. I think one more firm squeeze will calm him. I think if he would just let me do the leg compressions that would calm him but yet I still see the struggle.
I often wonder what it is that makes this so hard on him. Why does he move around so much? Why can't his legs just stop? What makes this so hard for him to deal with? I look at my little baby and I wonder if it hurts him or he is confused. I wonder if he even knows that he struggles. I wonder what am I missing that I can't help him stop moving. I wonder what is really going on with him that his body just won't stop.
Finally as a peace washes over him and the fight in his body leaves I see the calm wash over his face. This journey was often not quick or in my eyes not quick enough to give him peace.
He fights all the way into sleep. After several minutes of flailing around, often kicking, screaming, hitting he will find a calm and just when I think calm has won he will open his eyes and his little hand comes after my face. He will grab at my hair and eyes and then back off and be calm again. I have heard this from so many parents. And the wonder starts all over again. Why does he do this why does he feel the need to scratch and claw at me? The thought is they are trying to process everything but my thought is I just want to fix everything. I don't want him to suffer. I don't want him to hurt and I don't want him to feel any pain. I just pray he doesn't know this pain. I pray he feels my love and knows that mommy may not understand but will always be by his side.
I haven't written anything for awhile because every time I go to write it comes out I hate autism. I sit back some days and think okay the word autism isn't as bad as the word autistic. I can handle the word autism. And then I think I hate autism.
I often wonder how I knew so little about autism three months ago, six months ago or even a year ago. Mind you, I still feel like I know nothing about autism except I hate autism. There are days it is just so frustrating because I can see the struggle in my son's eyes or I can see the lack of communication skills making it so hard on him to get me to understand what he wants. This amazing little gift shouldn't have to struggle, shouldn't have things so hard but he does... So I have to stop hating autism and start letting go.
When the word autism was spoken to me at first I thought, I have a grasp on this nothing has changed, he is still Owen but now I think everything changed. Not in Owen but in me. I got protective, I got fierce, I got the title Momma Bear. I will do anything I can to help my son, protect him and let him be Owen.
Today, I look at my son and I think I can't wait to see what he does next. Today, I decided to stop hating autism, stop hating the word autistic and start just knowing that it will be okay. In fact Owen is thriving and learning and I can see such a spark in his eyes. Today, I know that no matter what this momma bear loves her son and no word or condition will ever change that.
So many things have been happening. It seems like I have been sending out more emails and talking to more places in the last week than I have in months so writing has taken a back seat. I think I have just taken some time as well to sit back and reflect on my little dude. With that being said what an awesome week for Owen! What an awesome week for momma!
Owen said last night "a is for apple, b is for ball". There was not a happier moment for me this week. I sat here and just bawled. I wanted to try and figure out how to get him to say it again. I wanted to repeat that moment a thousand times. I wanted to rewind and record those precious words.
With me saying that was the best moment in time, I could have said that about a day earlier in the week where he was listen to the Small Potatoes Christmas song and he sang! He literally sang! He sang the words he knew and he made sounds through other parts of it. To hear my baby sing Momma Momma and then hohoho was the best feeling ever. Having him actually sing words with the song, not just say them, was beyond amazing. Knowing he is getting this is the so awesome!
This week I have reached out to a few organizations and with that being said I am happy to say I am starting a support group in the Charleston, WV area. There will be more details in the next few weeks about what is to follow. Please contact me if you would like to be included in this group or help out in any way. If you are not in this area but would like to get a support group going I can help you get in contact with the right people to help you with your journey as well.
This journey with Owen might be different than I thought but through Owen I find such strength. He has given me a new determined motivation and seeing his smile and hearing his laughter is all I need to make my day bright. I am so thankful for my amazing little man. I cherish every step in this journey with him and know that everything will be alright.
Since March 12, 2015 my world has changed. I suppose really it was way before that but that was the day I actually heard the word autism come out of a doctor's mouth. That was the day things were confirmed about my son and that was the day so many things changed but remained the same. My son, Owen was with the Birth to Three program, he has now been to two doctors that have given him the autism diagnosis and numerous other doctors. Not one of these people really gave me the next steps to how to help my son. I wonder sometimes did I not ask the right questions, did I not have enough of a bewilderment look on my face or is it just something they don't do. I wish one of them would have said here are the next steps for autism, giving me a resource guide, something but yet nothing. How do we get these doctors to get the patients the help they need, like connecting patients with the Autism Training Center? The only reason I knew to contact the Autism Training Center was because another parent told me about it. Yes, I Googled everything I could about autism and saw the site but because it wasn't right in my area I didn't contact them right away but they send stuff to me. So how do we get these doctors to help us? I would think that it should be an easy referral for any doctor to make to send parents to a facility for advice and direction. I would think that the doctors could easily hand out a packet that has the Autism Training Center or another facility's information to call. I am very new in this journey with my son but I'm very motivated to make this journey easier for all that follow me. I would like to start a support group in Charleston. I think it would be great to have people that have been down this road mentor people like me that are just starting this journey. With the help of the Autism Training Center I have found many resources. If you are in my area and have a child that has been diagnosed with autism call them they will help.
Writing hasn't come easy for me the last few days. I start, I stop, I cry! Sometimes writing is that reality I just don't want to see come falling across the screen as I hurriedly face all my emotions. So if I don't write I don't see them. Well we know that isn't true, they are still there facing me like ridged memories in a moment of time.
Today, I called yet another doctor's office to get yet another appointment for yet another heartbreaking moment in time. I suppose I should think positive, it is what I always tell everyone, stay positive but yet my heart is there waiting for the disappointment. The more we go to doctors the more I wonder. I took Owen to a doctor's appointment 6 months ago with no conclusions, no suggestions except keep doing what I'm doing and I'll see you in six months. Why does it take doctors so long to diagnose autism? Why if they don't want to say it is autism why don't they say it is a brain delay and treat the symptoms. Oh, your son can't talk, well let's get him in this extreme therapy. Your son doesn't stop jumping, let's get him in occupational therapy or physical therapy. Well that hasn't happened. Why wait until they are three or older when they always say the early years are so important?
I wonder what the days ahead will bring. I see such progress in him. I see such an amazing spirit. I see my little boy growing up trying to get outside of the internal trap that has ahold of his words. I beg his brain set them free tonight, let him speak glorious words but yet I think when he said "a is fo APULL" those were the most amazing, beautiful words I have ever heard.
So today... I start and stop and cry!