My 1st Blog Post and A Message to Some Old “Friends” all in 1

Posted: July 6, 2012 in Uncategorized

I have decided to start a blog. I’m not good at writing, never have been and I will probably mess up a lot in this, but who cares. 

1 in 88 children are diagnosed with Autism. 1 in 54 boys! and my little monster is 1 of those children, he is one of those boys! 

Anyways, I’m starting a blog to help myself. See ! week ago my son was officially diagnosed with autism. Yeah, my little man is autistic. Even though I have known since about a year ago he was “different” and most likely had autism, well we still needed the diagnosis to keep moving forward. My mind is constantly going, looking up this and that. Dealing with therapy schedule and trying to do “normal” things. The past year has been like hell even though I have a wonderful family who is supportive it still sucks. So the monster was diagnosed with autism. The 2 doctors said that Mike(my husband) and I were doing awesome. We went in the evaluation room with information that I don’t think anyone expected and instead crying and denying anything was wrong with our little guy, we left happy because we can move forward and get him more help. So he has an official diagnosis…moving on. So we go back to our normal lives, but now instead of saying he is going through the process of being diagnosed I can officially say he has autism. 

It all started about a year ago I started noticing how “different” the monster was. He didn’t wave, clap and/or point like normal 15 month olds should. So at his 18 month check up we were told he did have a developmental delay and we started a long process of waiting for Riley Children’s Hospital. It took us a good 8 months or so to get an appointment and then it took us another few months to just get in. Once we got in we got the diagnosis within an hour or so. Do I feel relieved??? NO not really, its just going to be a little easier to explain to people what is going on, but I know somewhere down the line I will have my battle with a parent, school district, insurance company, random person who is just getting annoyed by one of the million things my monster does. Thats okay, because Mike and I are willing to fight! And I will fight with every single person if I have to, so here is your warning. 🙂 

He is in developmental and speech therapy. Hopefully he will start Occupational soon, but we have been waiting for that for a few months now (ugh the waiting game). He has made awesome progress, his behavior is improving here and there (less meltdowns). He is making better eye contact and we notice he tries to repeat words here and there. He is listening better and even responds to certain things like “cup” and even his name! He has sensory issues too, and for those of you that don’t know what sensory processing disorder is…well imagine going grocery shopping and being oblivious to the world. Then you get in line and instead of hearing the baby crying next to you, you focus in on the cash registers and all you hear is the beeping…beep after beep after beep. Well the monster has sensory issues with his hearing, sight, touch and taste. He only eats maybe 10 to 15 different types of food. And before you say “make him eat something else.” Its not that easy, again his sensory issues stops him from trying different types of food and has limited him on these types so if he decides to ONLY eat McDonald’s for 2 days in a row…well this mamma is getting him McDonald’s. Anyways, we have noticed how he likes to be loved on also. Which is AWESOME!! Some autistic children hate to be hugged, kissed, tickled..etc…NOT our monster he loves attention, I think a lot of it is because of his aunts. He seeks attention from certain people and loves his therapists. All I know is that means he shows loves and likes getting shown that he is loved. That is amazing to me! 🙂 

So the monster is making progress! Awesome! So now you know he has autism, he is making progress and he has sensory issues. 

This past year has been the hardest year of my life! And back in March I lost a cousin of mine, even though we hadn’t talked in a long time. We grew up together, we were best friends growing up. We literally spent every weekend with each other and spent every summer with each other. We were 2 peas in a pod. We were like brother and sister. I visit his gravesite every 2 or 3 weeks because I feel like something is missing. Part of my childhood was buried with him and I will NEVER be the same. So between the monster being diagnosed and therapy sessions, meltdowns, long nights and just being stressed. I am grieving 1 of the hardest deaths that I think anyone can go through. I keep thinking that maybe it will get easier, but it hasn’t. I miss him and regret not even being able to remember out last conversation. So I go and visit him and even take the monster with. I make sure to water the flowers while I’m out there visiting, I fix things if they fell over and I talk to him and tell him how much I loved him.

So a message to my old “friends” I’m sorry I haven’t called or texted you and asked how you were doing. I’m sorry that I wasn’t there for you when you and your boyfriend were fighting or when you were stressed about money. Yeah, I’m sorry about not asking why your day went to sh*t. I’m sorry about not being your best friend when you were in a good mood or in a bad mood. I’m sorry that I just wasn’t there for you. I’m sorry I wasn’t there for you when you needed a shoulder to cry on, or when you wanted to tell me the things your 2 year old learned. But the thing is where were you when I told you what I was going through? Where were you when I told you the monster had to go to Riley’s? Where were you when I lost not just my cousin, but my childhood best friend? Where were you when I said I was so exhausted and tired because I was literally up all night? Where were you through this past year of hell for me? I’m done waiting, I’m done asking myself what did I do? I’m done waiting for an invite to your child’s birthday party. What happen to inviting me to come over that way our children can play, I’m not the only one suffering here. So here it goes…I am done waiting for a text or a phone call. To my old “friends” where the hell were you? You were busy with your own life and I completely understand…but while you were busy not sleeping because you were out partying, I was not sleeping because my son decided to stay up until 4 in the morning. So next time you think your being a “good friend” by seeing me at the store and asking how I’m doing….well you are just another person. I am fine without people like you. I have an amazing support system! My family, My mom and dad they might drive my insane, but they are there. My sisters who love their little monster as if he was their own, they seriously are the best aunts in the world. And my husband who drives me insane with everything, who I can fight with all the time, but 1 thing I know he won’t be the father that walks away. Especially since his little monster has autism and from all the story’s and studies, a father sticking around when their child has autism…well it is very rare just take my word for it. But the connection Mike has with him is amazing and I am beyond grateful that I have a husband that no matter what happens in a year or 10 years down the road, he will be there for him. I have a good support system, but it still sorta sucks that this whole time you had an “idea” or I might have even told you what was going on and you were no where to be found.

I know I rambled on and went here and there in this blog. Its my 1st blog and like I said I’m not good at writing or any of that, but I think I needed to get a message out there to some people and maybe this will help me deal with things and if it doesn’t then maybe it will help some other mom or dad going through a hard time after having their child diagnosed..who knows, but 1 thing I can say is my little monster is healthy and seems to be pretty happy tonight. 🙂  

So I am finishing this off with 2 awesome quotes! 

  • “Autism, is part of my child, it’s not everything he is. My child is so much more than a diagnosis.” 
  • “I know of nobody who is purely autistic, or purely neurotypical. Even God has some autistic moments, which is why the planets spin.” 
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Comments
  1. Pamela Murillo says:

    Alisha,
    I had no clue all of this was going on. Your blog should open a lot of people’s eyes (including mine) as to how lucky we are. I hope that ***** continues to progress through all the therapy. You all will be in my thoughts & prayers. If there is ever a time where you need to talk to anyone, I am always here. Stop worrying about other people. They obviously aren’t worth wasting the time on! Take care of yourself & your family 🙂
    Pamela

  2. April Mimms says:

    Awesome Blog! Cried through most of it! Stay strong and I hope this helps you to let out built up stress and feelings! Your an amazing mom and don’t let anyone tell you different!

  3. Nikki Sturgeon says:

    Thank you for sharing. I have a nephew that has Autism and he is truly amazing as I’m sure ***** is:) If you ever need someone to talk to or even to watch Aiden I will gladly help out! I have a love for children that is so big none of them are different in my eyes. They were all sent from above for a reason and that is to be our Angels:)

  4. Becky says:

    Thanks for this blog. Made me tear up. I enjoy knowing I’m not the only who is going thru these things including loosing friends. Keep up the blogs its helping me 🙂 glad u have a support system I have no one including my in denial husband. Its a long hard battle for sure.

    • harmony671 says:

      Blogging, writing, sharing will be so helpful to you as you work through this dx and this life…and in the process you will find other parents gaining strength just from reading your blog and knowing that someone else is out there struggling with all this too. Thanks for jumping in with both feet 😀

    • jennifer says:

      You go girl! I have been on this journey for ten years. Most people are so caught up in their on lives to care about anyone else. You are so lucky to have sisters who love your son too. Just take one day at a time and celebrate all the small stuff that your son does. Your son is lucky to have you and your husband for parents.

      • Jennifer, My parents are beyond awesome! And his aunts love him beyond words, its amazing how much everyone care about my monster and I know if anything were to happen to MIke or I he would be in the best hands! Thank You!

    • Becky, I’m here to listen and hopefully be a friend. Good luck with everything!

  5. Katie says:

    I LOVE your comment to your old friends. My son has not been diagnosed with autism yet but it could be in our future. But we have been in our year of hell! He has sever sensory disorder and sever anxiety and I couldn’t believe the people that dropped me like a bad hat when I couldn’t go out on GNO because his nights were too hard, or money was tight from all the therapy/ random stuff you have to pay for, or he can handle play dates or parties so they are scared to ask us over. We don’t have the plaque and he’s not contagious. But i did pick up some new great ones. I did learn it’s not the amount of friends you have it’s the quality. So to your old friends, my old friends, and everyone elses old friends we will be here when you need us I’m sure because we will care and be considerate sorry you couldn’t do it for us when we really needed you!! And I agree take the diagnosis move forward get the help you need an enjoy your little monster. 🙂 PS my son is affectionately referred to as the Devil >:-)

    • Katie, I can totally relate as you just read. 1 thing I found out after we started the process of getting a diagnosis was the autism community is amazing!! I didn’t know anyone close to me that had an autistic child. I have a cousin that is autistic, but we are not close…so I started looking for people online and it helped. After my monster got diagnosed I figured maybe someone was having a day or year lol like mine. Maybe this can help someone if not help myself. Honestly autism sucks, I have no problem admitting it, but my son is perfect the way he is and I have learned to appreciate that. Good luck on your journey and keep reading my blog 🙂 and hopefully your little devil doesn’t cause you too much trouble.

  6. Carly says:

    Gosh, this is a beautiful start to this blog. I love the way you lay everything out there so honestly. I wish I’d done something like this when my little boy was diagnosed nine years ago. You have a great writer’s voice. I know you’re going through a lot of changes right now. If your experience is anthing like mine, you’ll have good days and bad days on your way to the person you become as a result of loving your child. Please keep writing. You have a lot to offer.

  7. Janice O'Leary says:

    Welcome Mom! You are dong great! Mike and Monster too!
    Just thought you might like to check out Jean Nicole’s The Eating Game!!!! It is awesome for picky eaters. Jean designed it for an autistic boy she was working with.
    Bless you and your family,
    Janice*

  8. Janice O'Leary says:

    O’s 4Rs would be fabulous for your family:) read about it in my blog.

  9. Rebecca says:

    Hi! AD sent me:-)
    Your son sounds a lot like mine. Except he won’t even try to imitate words (or anything else for that matter!) I can relate to the “abandonment” feelings you express toward my friends. When I started noticing my child was different, I was desperate to get him around other kids, and whenever friends were evasive about playdates I would feel a little paranoid that they didn’t want to get together because my son was different. I don’t know if that’s the case, or if life is just BUSY, so I push the paranoia off and just keep trying… But not aggressively. I think a lot of people just don’t know how to be supportive of what we are going through. Maybe seeing our sons makes some friends feel guilty for their NT kids. Some people come around and others don’t, and it just is what it is. Life is like that anyway, and it probably wouldn’t feel so personal if what we are going through didn’t make us feel do isolated.
    I had a blog some years ago and it made me into a much better writer! Good writing entails good editing, which is something people tend to remember to do before posting something that anyone in the world could see! I don’t see anything wrong with your writing, so don’t be self-conscious about it;-) just keep editing before you post and I’m sure you’ll be fine. Blogging can be so therapeutic because it gets things off your chest and allows people in to what you are feeling so those feelings don’t weigh you down anymore. I have thought about blogging about my son, and probably will take the plunge at some point, but blogging takes time and can be a little consuming so I’m not sure I can juggle it yet with being a single mom, self-employed, taking online classes… Anyway I applaud you for writing; I hope you keep it up. I know it’s going to help you make some new friends that know what you are going through, and help your present friends understand it.

    • Thanks! and I totally understand about the playdates thing. It’s hard, I’m a worry wart so it just tacks on more opstacles for myself..let alone my son. I applaud you being a single mom! Good luck!

  10. Sarah says:

    I found your blog through Autism Daddy and I am glad I did! I am many years down the Autism path and had worked in the field since 1987 so technically I was an Autism expert. Ah… NOPE! My son has taught me so much more than I could learn in a classroom as a student or a teacher. James is 8 and was diagnosed with Classic Autism at the age of 3. Today, at 8 and a half, he has surpassed all of the professionals expectations. You can check us out at http://www.facebook.com/LaughterCouldBeTheMissingPiece or on my blog http://laughtercouldbethemissingpiece.blogspot.com/ I also have a website for families who are new to disabilities called Well Worth the Journey https://sites.google.com/site/wellworththejourney/ There is a lot of information there as well as several publications I have written to help demystify disabilities. Here is the link for the Autism one https://docs.google.com/viewer?a=v&pid=sites&srcid=ZGVmYXVsdGRvbWFpbnx3ZWxsd29ydGh0aGVqb3VybmV5fGd4OjZjNWJhMDUxY2MxMmQxZmM I hope your journey and new path brings your family peace and understanding of your sweet little one. Just remember, all of the feelings you have or will have are feelings we have all had. Find support if you need it. I hang out at MyAutismTeam http://www.myautismteam.com/ and support people as I am able. Welcome and Peace!!

    • Thanks! I liked your page right away on facebook. Like you said the feelings I have now or will have everyone had had. I’m not gonna sugar coat and say that I’m glad my son is autistic…because I can’t lie about something like that. I love my son beyond words, but autism sucks a good chunk of the time. But I will take the good with the bad..and laugh in between!

  11. Manic Mom says:

    Blogging has been a great outlet for me even before Kaden was born. But, now that he is on the spectrum it has meant that much more to me. I have met some of my greatest supporters from my blog. Stop by my blog anytime and I look forward to getting to know you and your family more. Take care!!! I have a family blog, one for homeschooling and my lupus journey, but I also have one just for Kaden….. http://kadensaspergerworld.blogspot.com/

  12. A. derr says:

    I think this is just great! I have been learning so much about Autism lately with my new job, and I am so thankful you invited me to view your blog so I can read all these amazing posts, not only from you and mike but from other parents. Love this!!!!

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