A Day in My Life

A Day in My Life...

A friend sent me a link to a blog about a mom who has a son with autism and a sensory processing disorder. The blog was very well written and told of all the things she is thankful for. But when I first got the text and saw the link with the words "a special needs mom", my heart fell to my stomach and I didn't immediate read it.

You see, I have this fear of falling into that camp. I don't want that label because I don't want a label for my son. I want the only "label" the psychologist gave him: developmental delay and communication disorder. And a 2 year prognosis of getting him "caught up". I wish I knew what that looked like. I don't want a label that elicits more fear and anxiety, although I don't know if it is possible for me to have more fear in the area of Blake.

I still question his diagnosis and if it is accurate. When I see him walking on his tiptoes or walking slightly funny, fear boils up and threatens to pour over. When he does things that are not typical, it hurts me to my core because I want him to be okay. I want him to understand. I want him to talk freely. I want to talk to him and not question if he is actually understanding me. As I type this I have tears pouring down my face. Again.

I don't want to write this post in one of all sadness. But when I feel like I do at this very moment and people are tired of hearing about the same things every day, this is a place for me to turn. "It's a two year process for a reason." "So what if he doesn't fully catch up?" "You just need to trust." All these statements are ones I receive all the time and are ones I know. I know it isn't an "easy" fix. I know I will figure out how to help him, even if he doesn't fully catch up. I know I need to trust. But these answers are like bandaids on a broken heart. My heart is broken.

Despite my broken heart, I pull myself together every morning and try to be the best mom I can for my boys. I try to be a good wife, although I feel like I have a long ways to go in this area. I don't know how to make time for myself, and yet I know I need to take care of myself since I have another baby in my belly. One I am SO thankful for. For that reason alone I will try to figure out how to get through this. I just wish I knew the "end" date. I wish I knew the day Blake will be "caught up". It would make all this time in the process so much easier.

But that is not how God works. Sometimes I feel like the weakest Christian alive. I know that when I am weak, God provides me the strength. And His mercies are new with every sunrise. I  couldn't get through the day without His grace. And I wouldn't see the progress I DO see in Blake apart from God's work in Blake's life. I struggle practically living in the knowledge that this is all apart of God's plan. One of the only thoughts that truly calms my heart in times like now is this: "God has Blake the way he is today. It could change tomorrow. But today this is how Blake is and we will just keep working at it." There is no use in crying. But I say that once the tears are abated and I can breathe again. It usually happens once I have a moment of quiet away from the kids.

So back to the blog I mentioned earlier... this blog listed everything she was thankful for. I thought I would try to do the same...

I am thankful for my son. Blake is who made me mommy and the first person to absolutely steal my heart the first second I laid eyes on him. He is my constant companion and best buddy. He brings me so much joy and I have loved watching him grow. He aims to please, is cautious, loves his brother, and absolutely positively is 100% a Mommy's boy. He loves to laugh and make people laugh.

I am thankful for a husband who works hard to provide for us. Many people who are in our situation also deal with the financial burden of providing therapies for their kids. I am thankful that Matt's income allows us to not stress over the financial part of this. Therapy is expensive. We spend $90 a week for 50 minutes of therapy for Blake. That doesn't include camp or preschools. Or the resources I am continually buying in an effort to help him. God is gracious to allow money not stand in the way of us giving what we feel is best for Blake.

I am thankful for Ms. Katie and her knowledge of how speech works. She is so patient with me and listens to any concerns I bring up. Blake loves her and I appreciate all the love and help she gives to him. I know that Blake has grown TREMENDOUSLY over the past 3 months.

I am thankful for the friends who are walking a similar path to mine who have been understanding and have helped lead me in the right direction. For the time spent sending me emails and phone numbers and links to help me get ahold of people to help my son.

I am thankful for my friends and family who have listened to my worries and tears. Who have come along side me to support me in the ways that they can. It means so much.

I believe I mentioned how we recently got denied services from DDD and the state because Blake did not qualify. But I also believe that he is not receiving enough help with only 50 minutes a week. More calls and paperwork are in the process with Gilbert Public Schools now to get him evaluated to see if he meets criteria for their free preschool which meets in the afternoons. It would mean a busy life for Mr. Blake... and it is something we will have to pray about. But it is also something that could be most beneficial for him.

Points of prayer:
1) The process with Gilbert Public Schools and deciding whether this would be a good fit for Blake with additional preschool.
2) Blake is currently working on "Who" questions. This is so hard for him. As well as he/she.
3) Blake's play: he simply can't play apart from me. He literally chooses to sit on the couch MOST of the day. That isn't to say all day, but its a good portion.

I feel like I make Blake sound "special" when I write about him. He is definitely behind in some areas, but he is also right on track in some areas for a 3 year old. He still loves people and being social which is one of the best things about him. It is also comforting as this is such a positive sign.

So rather than ending this post on a sad note, I will end it on some positives:
1) Blake has finally started hitting the "functional" play stage. He takes Pablo around with him and says he is his baby. He will only feed him, give him bath, etc. if I am playing with him and there next to him, but not on his own.
2) He is getting better at remembering steps to going potty.
3) He is starting to try to tell us his emotions. He isn't always correct, but he is trying.
4) I have seen SOME improvement already in 2 days when it comes to WHO questions.
5) He requests to do things on his own more, like pouring his own cereal.
6) He crawled out of his room today and said he was a baby. Something that was using his imagination. He continually acts like he himself is a baby ever since we have talked about Baby Pagel and the baby growing in my belly. He says its a sister and that we will name her Sarai.
7) His eye contact continually becomes better and better which makes me realize he is understanding more and more of what I say.
8) He is more helpful and follows simple directions without me having to repeat myself often now.
9) He is still scared of public potties and their flushers, but is not crying at least now when we go in.
10) He is calling out emotions when he sees them on other people. He doesn't know how to respond always, but he at least is learning to recognize them.
11) He tells Kade sorry when he knocks him down. He realizes when he has hurt him (sometimes) and apologizes.
12) He tries to insert his thoughts while we are talking not directly to him but with other people on the phone or to Matt. He over hears and inserts some thoughts. I am not used to hearing him insert his words which makes me realize he is listening to almost everything I say and is understanding some of it. To the extent, I am not sure.
13) Books are seeming to come to life for him! He is answering yes or no questions or basic questions from memory when we talk about it after. We go back through the book and talk about people's faces and their emotions. I asked him why the brother was sad and he said, "The baby took tr..." Which I helped him finish "train." This was a WHY question and one of the first ones he answered.
14) He asks me questions that are now different than "What are you doing." He has asked questions like, "What are you putting on?" "Where did you go?" These are amazing to me when I see them becoming more specific.

Update #8

This is one of my all-time favorite pictures of this cute boy. He is getting better and better at looking AT the phone when i take pictures. Not always, but these past few weeks we see him getting better at this. 

Just a Thursday morning donut stop before speech! :) I'm a sucker for trying to create fun experiences that my boys enjoy. Food is the way to their hearts, right? 

Matt insisted on buying the boys a t-ball set. We have had many fun family nights playing with this already and it is fun watching both boys attempt this! So great for hand/eye coordination! 

Kade is SO much fun right now. So so so so much fun and such a joy to my heart. I love seeing his imagination exploding! He takes cars are drives them all around the house and plays so well with his Little People's. I can't wait for Blake to be at this level and watch these two boys play together! And I have faith it will come! :) 

Blake past 2 goals in speech: Girls vs. Boys and answering Yes/No questions. I am SO proud of him. He got to pick out this apple juice for doing such a good job. Even though I doubt he understood why he got a treat, I still choose to celebrate these milestones. 

I was talking with Ms. Katie this week about Blake's play and how he copies everyone in terms of play and speech. I told him how I had remembered that being a sign of autism and asked her her opinion on this. She said based on Blake's speech level, she guessed that Blake's play was copying and functional and very cause and effect (balls coming in and out, etc.). She nailed it! She said if Blake was showing other signs of autism which she just does not see that she said it could be a sign. But she believes it will come more with better language. Again, SO encouraging to hear from her.

The past months have been pretty horrible to say the least. Emotionally I break down almost daily into tears once the boys are in bed, and sometimes in a bathroom with the door closed during the day. Thankfully though I feel I have hit a turning point. I talked to someone who reminded me of a verse in Psalm 46 that says, "Cease striving and know that I am God." So much of my heartache stems from fear and of me trying so hard to "fix" him. Steph gave me an idea to write down all his positives during the day and that has helped a ton. At night when I am most apt to my sadness, I have verses written out to read and the day's list of all Blake's progress.

Let me share a couple:

-"I like your pink toes!" - referring to my painted toe nails. His commenting gets better and better!

-"I'm riding a horse and I'm pretending its a carousel." -Blake was moving up and down like the motions of a carousel. All of his "imagination" comes from his experiences.

-He has learned to take off his shirt, put on his shoes (two kinds), shorts, undies, and we are currently working on putting on a shirt. This is typical 3 year old development, but it is always encouraging to see him become more independent! 

-"I want to play doctor." -Blake took tools and was pretending to be a dentist and drilling my teeth. Future dentist? Perhaps! :) 

I'm thankful for God's grace and all the progress we are continually seeing with Blake. All credit goes to Him. He may use Ms. Katie and me, but the change comes from God! And the change in my heart comes from Him too. We are all so dependent on Him for all things... for every breath and for every victory. So glad I have a living hope. 

Update #7

Oh this cutie! The past 2 weeks he has started loving to wear our shoes! It is neat to see him start doing things that most kids do, even if it is a year behind or so! :) Kade also is in this stage right now so they both will walk around with my shoes on. Blake has also voluntarily worn his hat more which is fun to see too. 

Blake is commenting and talking very well. His therapist is continually impressed with his progress and is amazed at how much progress he has made in 2 short months. He is starting to figure out emotions and comments when he watches TV or when he sees my facial expressions with, "Oh, he is mad!" or "You are happy mom!" Ms. Katie says that this fact is VERY promising for him and she has full confidence in his potential. We know that being able to read emotions is HUGE, so we are thankful to be seeing this skill emerge with him. 

He has started shaking his head "yes" and "no" and using more gestures - something he hadn't been doing before. Again, this is just showing further growth on his part! He is also using words like, "HEY!" to get our attention. 

His echolalia is getting better. He still continually sings and loves music. The songs bug me, especially when he sings in the most random places like during dinner. I know this is partly due to the fact that he feels like words need to be spoken to fill that void, and singing is easiest (according to his therapist). 

 He walks around with sticks and likes to play drums. He also has a little piano that his Opa and Omi got him a while back that he enjoys playing, as well as my big piano. He will sit there and play and sing made up songs or a version of a bunch of songs put together. Yesterday when I told him to go play with Kade in his room he started walking and looked back and said, "Come on back Kade! I will teach you how to play the piano!" while gesturing with his hand to follow him. To think this is the same child as 2 months ago is mind-blowing. He attempts to include his brother in most things.

He has started talking "gibberish" sentences to me this week. He will try to tell me something and just can't get to the words quick enough so he is just making sounds. It is hard to see, but also encouraging to see. It shows his brain is thinking quicker than he can access the words. Hopefully that gets better with time. We still have to give a lot of "wait time" when we are talking with him. I am finding if you give him some time, he usually has something to say. A lot of times I know what will be said, but other times I don't. And sometimes it is still something random, but part of me wonders if that is because he can't get to the words he wants, so he chooses to say something common and easily spoken.

He is a VERY visual learner. Very hands on. We find that his experiences provide most of his talking points. And this is okay. Hopefully talking will become easier for him like it already has.

I am very thankful for the progress that we have seen. God has answered prayers. I feel I still find myself discouraged some days when I start focusing on the things that have NOT changed much. Like his playing. He still can not play imaginatively well at all. He doesn't take his trucks and play with them or do anything without me leading the play. He follows me around and is content to do NOTHING which is just so ironic to me. I still feel he wonders around not playing with much. He will line some things up like blocks, and when I tell him that is not how we play with toys, he gets frustrated at me. I am trying to find that balance for him or just letting him being a kid but coming along side and helping him since that is how he will improve. He still chooses to play with cause and effect toys and is best independently with legos or building. But even that doesn't keep his attention much anymore. 

As I write this, he came up to me and said, "What do you want to play with?" I told him I was going to work on my computer and told him he should go play cars with Kade. He told me, "No. I want to play with Mommy." This is often his response. But again, its more me telling him how to play rather than him playing WITH me. He doesn't offer much. 

Prayers: continued talking for him, improvements in his playing, and a patience and trust in God for myself. I still find myself apprehensive. 

Thanks friends and family!