Friday, August 31, 2012

I have attempted to post nearly every day this week. I have written up drafts, but nothing feels right. Honestly, I’m not in a great place mentally and I don’t feel that I have much to contribute at the moment.

At some point, I will need to change the name of this blog, because we’re not going to Disney. We had to cancel the trip to help pay for our rent and utility bills, because JC’s job has fucked with her paycheck three times in the past month and a half by paying her 5 days late twice, and then “forgetting” to pay her for the PTO time when she was out on surgery. We had no choice but to get a refund for the trip because we needed the money because of her job. The same trip I cried over when I paid it in full back in February. The first trip we would have had together in over 9 years. I cried after calling to cancel it.

I’m so over everything, you have no idea.

I desperately need a break from work now more than ever, I haven’t had any vacation time off at all since my maternity leave two years ago. Last year, all my PTO days got used up from my mom being sick and passing away. I had no days left by June, so no time off just for a break. This year, it looks like the same may happen again with all the days I’ve had to take off for evaluations, appointments and meetings for Dylan. I don’t think I will have enough time left to take a week off. I need time off from this place!

I’m also dealing with crap from JC’s mom. Lately, she is getting bitchy because we don’t “spend enough time with her”. I used to spend hours there every single night when picking up Dylan. Being her own personal shrink, and listening to the same complaints about her family every night. I can’t do that every night anymore because Dylan has therapy most nights and I have to rush home to make it in time. When he doesn’t have therapy, I spend time with her, like Tuesday night. She spent all of that time complaining that “no one care about her, so she will care about no one”, all because we didn’t have time to entertain her over the weekend because we had things we HAD to do like laundry, food shopping, clean, etc. We do not have time during the week! Usually JC will run her around all day Saturday, doing whatever she wants to do, and will often bring her over to spend the night. If she’s not doing that, than her sister will do it. But we all had our hands full this weekend, and couldn’t. She wasn’t suffering alone, she spent all day Saturday with her sister, having a great time (in her own words), and spent Sunday with her (much younger) boyfriend. But all week, she has had an attitude when I go pick up Dylan because we didn’t spend time with her this ONE weekend.

I’m over this shit.

I am juggling working 40 hours a week, with two different job responsibilities at work. When Dylan doesn’t have therapy, I have “homework” that I have to do with him on my own, and keep records of everything and his progress. I have a home to take care of, and pets to care for. My weekends are completely full. I have to do all of the household chores that I can’t do Monday through Friday because I have therapists in my house and I need to be involved in the sessions so I can carry it over into our every day life. I also have to set time for Dylan to just be A KID. I have to give him time to play at the park, things like that. Soon it will be cold out, so I have to let him enjoy the warm weather as much as he can. I also spend time with JC’s mom the nights he doesn’t have therapy, and most weekends on a Saturday. What more does she want, my blood??? Are we not entitled to spend a little time as a family of three sometimes?? I really do love her and care about her, but I can’t see why she doesn’t put herself in our shoes and stop making things even harder for us. We are doing the best we can!

Guys, I am trying. I am trying to keep my head high and a positive attitude. It’s becoming HARD to do it. For the first time in my 32 years of living, I am seriously considering taking an anti-depressant. I don’t want to, but my mind is going in a million directions. I’m not superwoman, I can’t be all things for all people! The most important thing to me is my son, and being there for HIM. I feel stretched to my capacity, and don’t know how much more I can take before I break.

Wednesday, August 15, 2012

For the love of Pocoyo

On to a lighter topic finally: birthday parties!!

For Dylan’s 1st birthday party, we went all out. We had it at a catering hall, 50 people, DJ, balloon twister and a photographer. It was a Dr. Seuss theme, and I went crazy with the invites, favors and decorations. I had SO much fun planning it!

In two months, Dylan will turn 2, so of course I’ve been wondering what to do this year. We decided to have it in the apartment because there is no way we could do a huge party this time around. Which means much less guests invited, but I think Dylan will enjoy it way more in our home with family and close friends. I chose a Pocoyo theme because that has been Dylan’s number one cartoon since he was 6 months old. I kinda wanted to go with something easier like Mickey Mouse or Thomas the Tank because you can find party stuff at any store, and I remembered how hard it was to find Dr. Seuss stuff. But considering that one of Dylan’s few words thus far is “Elly” which is a character from Pocoyo, and it IS his favorite, I made it my mission to have that theme.

For whatever reason, they don’t seem to sell Pocoyo birthday party supplies in this country except for a FEW things you can find on Ebay. I finally came across an online party store in Spain that would ship to the U.S. Their prices were pretty reasonable, but I had to pay $38 for shipping. I thought it wasn’t too bad of a deal in order to give Dylan a birthday party he would really love. And Pocoyo, he does love. He actually spins in circles with a huge grin on his face when it comes on.

Am I the only nutcase when it comes to birthday parties?? Please tell me I’m not alone! LOL

His invitation, the purple box has the party info, which I edited out :)

Tuesday, August 14, 2012

Thank you!!

Okay, back for a second post.

Dylan’s ABA therapist called me so excited to tell me that their session was amazing today, he has pointed on his own 90% of the time and he actually said the word “car”!!!!! This is HUGE!!!! He has only been in speech and ABA for one week, and has progressed in leaps & bounds already! The ABA therapist said she could see I worked all weekend with him on pointing for items, because he improved drastically since Friday! She and I were both so happy over the phone and PROUD of him!

Your comments, her phone call, are all driving home the point that I can’t drive myself to the ground. He is progressing so much, and I am doing the best I can for him, but what good will I be to him if I am not here?! It’s hard sometimes to feel powerless for your own child, I almost feel desperate to do anything for him at all. Yet, with just a little time and help, he is doing so much all on his own without his mommy! I’m not a doctor nor therapist, all I can do is ensure that he is getting the right care and to do my part. If I eat well and exercise, I will have so much more energy to take on whatever I have to for him. I know this deep down, but why didn’t I practice it? If only I would have fought for myself as much as I do for Dylan.

I don’t want to be a clichĂ© blogger, I don’t want to disappoint you all and I don’t want to disappoint myself.  

Trying to find balance

As my focus has been 100% on my son, my newly found confidence and habits have been slowly chipped away. I can honestly say that since June and getting involved in Early Intervention, I just haven’t given a **** about myself. I did not care about what I ate. I did not care about doing my walks. Honestly, I was just trying to get through each day. I have spent countless hours online researching autism, therapies, programs, etc. I have been on the phone calling resources and groups. I have been spending my free time with my son practicing what I have learned to engage him. I have felt enormously guilty on NOT spending any moment I have to myself doing anything other than what I listed above.

“How dare I do something else while time is wasting as we speak, and my son needs all the help I can give him?? I am his advocate!”

That has been my internal thought since finding out about his diagnosis.

No wonder I have had chest palpitations and anxiety. No wonder his speech pathologist keeps telling me to RELAX and that things will be okay. She said I have to take more time for me and not feel guilty for it. She said that she appreciates how involved I am because many parents she sees do not even sit in on the session, and all they care about is collecting the disability check for their kid, but she says I am on the opposite side of the spectrum and I am getting consumed with it all. She said she can see how much I want to be there for him and help him, but I’m going to burn myself out in the mean time.

Yes, it appears I am becoming THAT mom.

I woke up yesterday morning resolved to keep working on me in addition to being there completely for my son. I packed the healthy food. I walked fast during lunch. I am doing the same today. I have to force myself to continue on the path to healthiness. I see things falling into place for us. Dylan is doing SO well in his therapy sessions, and is trying so hard to learn new things. I have to force myself to relax like Linda said. I can be his “warrior” and still work on myself at the same time. I have to learn balance. Since May, I have gained 10 pounds back from my lowest of 197. I was starting to grow ambivalent about my weight because I almost see myself as a non-factor. I KNOW how bad that sounds, trust me!

Basically, I have to fake it until I make it. I have to just do it.

Thursday, August 9, 2012

You guys!! I’m so happy and excited! Dylan had his first speech therapy session last night. The Speech Pathologist Linda was awesome!! She knows her stuff, she loved Dylan off the bat, and she stayed at my house talking for two hours, even though she is only paid for 30 minutes. She is a 64 year old true Southern lady, and she had loads of experience. Doctors even contact her for their own children. She said her entire life is dedicated to her work, and even though she’s at the point where she doesn’t have to work anymore, she loves what she does. She even has a fiancĂ© waiting for her back in South Carolina, but he was a Mayo Clinic doctor and understands her dedication. She said she is in it for the long haul with Dylan for no matter how long it takes. She said if there is ever anything worrying me about him, even not related to speech to call her any time of the day or night and she will be there for me. She said for some reason she takes a strong liking to him because Dylan reminds her of her father who passed away, and that he is the prettiest baby she has ever worked with in all her years. She said his red hair, brown eyes and dimples are going to do her in LOL.

He LOVED her back! He kept laughing at her and smiling at her, and she got him to follow a lot of gestures, some with her help. He did things he’s never done before with her. She said she believes he also has Verbal Dyspraxia, which she said he involuntary cannot get his mouth to say many things. She said not to worry because she has taught many kids with that diagnosis to talk in sentences. She said she can see that he does have Autism, but she said it is mild compared to many of her patients that bang their head on the walls, will not look at her, and scream if touched. She said he has so much potential, he will do well, and she can see already how bright he is. She said she can see how much he seeks me out, and loves my affection, so that is a great thing.

I loved this woman SO much, she is all business and is very methodical in her teaching. She gave me homework to do with him, and I have to keep perfect records of what he does and when he does it. She said she keeps data on file of all progress. I love finally having something I can DO, instead of worrying what to do. I feel empowered now! She said she is going to push for him to get 4-5 days a week instead of three. She also gave me the rundown of how the other therapists should behave, and what to look for. When I told her that I think God sent her our way (my coordinator begged her to take on the case because she knew Dylan would progress with her), she said she doesn’t hear that with a cold heart and she believes in God as well, and believes the same thing.

Okay, that ends my rave of Linda! I have two GREAT therapists on Dylan’s team so far! I am so happy I feel like crying at my desk right now. So happy!! I promise not to talk so much about the therapists in the future, but this is the best thing that has happened to me since Dylan was born! I feel very lucky!!

Wednesday, August 8, 2012

Yesterday began Dylan's first ABA therapy session, he will get it two hours a day, Monday through Friday (for now). It was at JC’s mom’s house, because the therapist could only see him from 10:30-12:30 because of her schedule.
The feedback she gave me was great, she texted me afterward. She said, he was so sweet and comfortable with her, enjoyed all her activities. She said she lightly targeted increasing his eye contact with response to his name and having him point in exchange for desired items as she labeled them. She said she provided appropriate functional phrase cues for him in all situations. She said he has some imitation skills and clapped for her when he did good things (which he does for me also). She said he was very cute and has LOTS of potential. She said he only cried when she was leaving with her train set, he actually took it out of her bag and tried to hide it! LOL
She told my MIL that he is very intelligent and she thinks/hopes with some time and help, he won't even need services anymore. She said he cooperated with her and listened to her. He even waved bye bye to her at her prompting! He must love her, because I can't even get him to do that! :)
Now, I wasn't expecting such great feedback, that it almost takes me off guard! I am almost afraid to get my hopes up! He starts his Speech therapy tonight as well, so I guess I will get more feedback there. I expect it to not go as well since he only says two words currently. But I am hopeful that will change! The Speech Therapist is hysterical, she's a 64 year old lady recruited from North Carolina to NYC for her experience with kids like Dylan, and she lives a few blocks away from me! She has a great sense of humor, and told me she is going to be there for us.
I have been praying to God that the right therapists with the right help would come our way, and it seems like that is happening. I hope this is the start to great things for him! I am still waiting for them to find an OT therapist for him, hopefully that person will be just right for Dylan too.
I have been experiencing A LOT of anxiety lately, in the form of my chest feeling tight or my heart skipping beats. I think once we fall into our routine it will be okay, but it's been a little nerve wracking waiting to hear from all the therapists and find out what the schedule is. JC's mom is not thrilled with the ABA therapy at her house right now, but I'm hoping she'll get used to it until we find another solution. I just want to settle into our new "normal".
I know this blog is becoming all about my son, but right now this is my outlet and really this is all I can focus on at the moment. It helps to let out to you guys what's going on, and to work out how I feel. I know things will fall into place for us, but it's very new right now so thanks for letting me "talk" about my little man so much and being there for me!

Friday, August 3, 2012

Most of the time, I am a pretty optimistic person. I believe I can eventually overcome anything thrown my way. I believe that there is always a light at the end of the tunnel. But sometimes, things catch up to me and I feel the weight of the world on my shoulders. I kinda felt that way yesterday, for no obvious reason except just a lot on my mind about Dylan. When I was driving home from work, I just cried and let out my fears to God. Yes, I talk to God. Yes, I know he doesn’t talk back LOL, but I think He does listen in.

I know I talk about God a lot on my blog, but my faith in God has been the thing that has gotten me through a lot in my life, and to not acknowledge that would be wrong of me. I am not ashamed or embarrassed of it.

When Dylan and I got home, he did a few things he’s never done before. I usually carry him into our place when we are coming because he tries to run away and I am carrying all our bags so I get scared, but this time I let him walk. He actually knew where we lived and walked up the steps. Without me prompting him or directing him. I’ve never actually pointed out to him where we live, but he knew anyway. Later on, he let me play with him with his pirate ship. He didn’t actually play with me, but he didn’t run away to do something else and he joined in. Then I started cleaning up some toys in one of his baskets, he helped me and when I asked him to put the basket away (not thinking he would even know what I was asking because I never asked him before), he put it on the shelf where it belongs! Then, he got so happy when I put on Thomas & Friends on the TV, he ran up to give me a hug. Then, he actually sat with me while I pointed out items in a picture book and quietly listened while I showed each picture. Then, I let him come on my bed to jump around, which I tend not to do because he has a little meltdown when I try to take him off, but after a little while I said “Okay, do you want a bath now?” and he just looked at me and let me take him off the bed and than ran to the bathroom ahead of me. Even though he couldn’t communicate to me, it shows me just how much he does comprehend, and once he (hopefully) learns to talk, he will progress so much!

Now, all of these things probably sound really minor and simple if you have kids, but the fact that Dylan having autism did so many things he’s never done before, and did it all in one night was so remarkable to me. I was sooooooooo proud of my little man. I started my day feeling sad and out of sorts, and ended my day feeling joyful and hopeful. It may be just a coincidence, but something tells me the big man upstairs had a hand in showing me just how much potential Dylan really does have.