momma friends

I don't know what I'm supposed to feel.  It is tough when my friends they talk about their typical children that are the same age as my angel.  I am happy for them, their children are wonderful.  Really.  But I don't say much because they just can't relate to being an ASD parent.  Then I noticed there is this whole community out there of autism parents so I read websites and blogs from those parents and suddenly I feel so guilty for feeling like people couldn't understand my world because these other parents have way more they are dealing with.  My angel is so high functioning they would laugh.  I can't relate to them just as much (or more) as my friends with typical children can't relate to me.  So who can I talk to about what it is like.  I don't want someone to feel sorry for me, I want someone who can relate to me.  Truth is, every kid with ASD is different, heck, every kid is different.  Real friends may be those with typical children, may be those with autistic children, or they may be those in another situation.  Maybe they can't relate, but they learn how to be a friend even when they don't understand.  Those are the real friends

back to school

We made it through the first week back at school. Hallelujah!  Growing up back to school was always exciting and fun and all kinds of wonderful.  Having my little ASD angel back to school has a whole new meaning and flood of emotions.  As momma I have all kinds of anxiety about having him in the care of someone new, someone I don't know well.  I have a hard time letting our angel go to school because I cannot be there and I don't know what is happening.  The little tidbits I can get out of him after school I can only try to piece together and rarely get much of anything, and that can be scary.  It is a whole new routine and new people, which can be tough for him to adjust to. However, I know that it is what is best for him and for us.  He needs to learn and he needs to be around other people. I can't keep him in a bubble, that wouldn't be good for any of us.  He does have a good teacher and the staff at the school is excellent.  I am planning on being a parent volunteer so I can have a better idea how the day really goes for him.  I am grateful for the dedicated teachers who are so understanding and work hard to teach all of their students.  We survived the first week, hopefully we will have a great year.

routines

One of the major discoveries we have had this year is the amazing impact of visual schedules and routines in the life of our angel.  Last summer we started posting a 4 month calendar on the wall of his room so that he could anticipate events that may be coming.  It was incredible how much he loved that.  I also regularly talk with him about what to expect each day and it is very important to him that he know what is going to happen before it happens.  Recently I dedicated an entire wall to displays of visual agendas and routines for our family.  He loves it and thrives on following them.  It is a great tool for getting him to do all the things he needs to do each day.  When it is on the schedule and he knows it, he doesn't fight it nearly as much, if at all.  It is actually beneficial to our whole family, we all accomplish a lot more when it is all planned out.  But I must admit it is not as easy for me as I wish it was.  I love lists and schedules, but over the last several years of being a stay at home mom I've gotten used to being able to do things when I want to do them.  And I don't have anyone making me stick to my schedule, even if I plan it out.  I'm doing my best to do it because I know it is what is best for my angel and myself and my family.

habit training

One of the big struggles we have had is with potty training.  Still not sure what all the difficulty stems from.  Suffice it to say that it has been the greatest source of discord in our home.  Over the past 4 years I have tried absolutely everything I could think of to make progress in this area. I've talked to people, read books, searched the interenet, everything.  We finally conquered the daytime wet training a couple of years ago, but could never get the solids.  Recently I read (another) book on potty training, this time one specifically for children with autism or other developmental difficulties.  One of the suggestions was habit training.  Thinking about my angel, I thought, this might actually work.  Thing is, it takes a long time to see if it produces results.  We have been doing it for a week now and have had one success, which is a big deal.  I am crossing my fingers and praying and really, really hoping this works.

lately

I have been overwhelmed with everything lately, again.  Every time I think about the struggles we are having or go to a meeting about ASD related issues I literally feel like I want to throw up.  Yeah, you could say it stresses me out.  I have to tell myself it is all just fine and calm down.  Honestly sometimes I wish I could just not think about it at all.  But I love my little angel and I will do anything I need to do to help him out.

endless questions

I get tired of trying to answer the never ending questions about my angel.  Every new person has a thousand questions that I am supposed to be able to answer.  We've seen so many psychologists, speech language pathologists, pediatric neurologists, on and on and on.  Every time we try to apply for a new service or see if we can make some kind of progress we have to go through evaluations and that means questions, lots of questions. I wish we didn't always have to analyze him. And I really don't like to label him.  But if that is how we get help for him and for us, then I will do whatever we need to do. I love my angel and I will do anything for him.

what is it like?

What is it like to be told your child has an autism spectrum disorder?

I don't know what it is like for most people.  I only know what it was like for me.  I know that sitting there looking the school psychologist in the eyes suddenly I felt a little faint.  Maybe a bit light headed.  I was disconnecting from my emotions because I didn't know how to handle it.  Disconnecting was my way of dealing with it logically, pragmatically.  "Okay." Was pretty much all I said at first.  I was very calm, collected (probably in shock).  She assured me it was all going to be just fine and that he was very high functioning.  He (and we) were going to be just fine.  I'm sure I nodded in agreement.  "Of course, we just needed to know so we can help him."  She asked if I had suspected something like this.  After all I had brought him in to be evaluated.  Even if I had somewhere in the back of my mind suspected, I hadn't suspected.  I told her that I wasn't sure what was up, but we knew we wanted to find out so that we could help him as best we could.  I was very rational as I took the information I was given that day and said I would do everything that they recommended I do.  I thanked them, got my kids in the car and went home.

Just like one ASD child is totally different from another, I'm sure our experiences being told they have ASD vary greatly.  But I bet we all have one thing in common, it changed our lives.

the first indication

When we put our angel in preschool we didn't suspect a thing.  We were as anxious and excited as any other parent.  However, it wasn't long before the preschool teacher started noticing things that were different about him.  She tried to point them out to me but I dismissed her.  I figured she just didn't know my child; she didn't know what she was talking about. Honestly, I was a little offended when she told me she thought I should get him evaluated.  As the year went on I saw some of the things she had been pointing out.  I gradually started to think that there may be a few things we could work on a little more with him to help him catch up.  She insisted it would be good to get an evaluation and that it would be best to have it done before kindergarten, in case there was anything extra we could do for him.  Eventually I gave in.  I really did want what was best for my child and if there was anything more I could do for him I wanted to do it.  I set up an assessment by the school district. I was shocked to find out that this assessment took place over 6 appointments over the course of a couple months.  Little did I know this was only the beginning of endless meetings, appointments, and evaluations. 

long term

Our angel had always been just that- an angel.  He came into this world as a huge blessing and he is still a magnificent blessing!  He was such an easy baby, always easy to feed and a great sleeper.  He was almost always mellow and easy to please. People said we were spoiled and they were right.  He was a late talker and a late walker, but nothing too unusual.  We noticed a limp when he started walking and he had to undergo hip surgery at the precious age of 19 months, followed by a cast, follow up surgery and a brace.  That was a very traumatic experience for all of us, but 100% heal-able.  Once he was healed, that was it.  Nothing to worry about ever again.  I told myself I was able to handle it because I knew it would end.  When we started to worry about language and social delays with him I coped by telling myself that this would be a hurdle we could overcome and be done with too.  I told myself it was just a delay and we would catch him up and that would be the end of it.  I think sometimes I still subconsciously allow myself to think that.  But the truth is, this is a long term deal. He will be fine and we will all overcome, but it will take a lot of time and effort and it will not be cut and dry.  New things will pop up and we will feel like we are starting all over again. But I have absolute faith that he will be successful in life and that he will be happy.  We can do this.

why I started this blog

I started this blog as a way to let out my feelings in regard to being a momma to an angel with an autism spectrum disorder.  Sometimes I just need a way to express it all.  I am sure that a lot of other parents out there will be able to relate to things in my life.  I am also sure that there will be vastly different experiences from mine as well.  I hope that we can respect, support and uplift one another and not judge or put each other down. I hope you enjoy it here. Thanks for dropping by!