You are Not Alone: A Mother's Reflection on Autism and Social Events

I see you...don't think I don't.  You're the one who can't sit down at BBQ's, parks or at kiddie parties. I see you pacing back and forth, keeping your eyes on your little one making sure they are okay, making sure they don't get into trouble, trying to keep them from getting in the way because you think others will not get it. I see you and know you because I was and am you too. That mom with the child  that happens to have Autism. You feel like you can't sit down and relax like the rest of the parents are, because if you look away for a moment your little boy might bolt and wander away. You think the other kids and families may not get him and may be mean to him, so you keep pacing back and forth all along keeping your eyes on him. You look around and wonder why don't these other parents get up and look after their kids too?  But that doesn't seem
to happen, it's only you.
   It's so hard at times, and you think no one gets it but believe me they do. You will see her or him and know right away, there goes another parent who can't sit still and then you turn to look and recognize the journey that they are on too. You connect to that familiar look of worry and tiredness. You want to reach out and tell them it's all going to be okay, keep up the good work; because not too long ago that was you chasing your little boy too, but now as the years have gone by I am actually sitting (not quite like the rest of the parent as my eyes are always on my kids and my ears are always listening for his scream). It is getting better though.  I can relax and eat my meal without fear that he will run away. I am reaping the benefits of all the Early Intervention and CPSE years, which included 36 hours a week of intense therapy. We worked and continue to work hard as a family to support both of our children (one with Autism) to live their best and fullest lives. So, as I sit here thinking I was once you not so long ago. I want you to know that I stand with you in spirit. I fight with you to bring awareness for our children and families. I walk with you and want to make sure you know you are not alone. We will all do this together.

Back to School Nerves

Here we are.  Once again, it's back to school time. I suppose the older I am becoming, the faster everything seems to be going. How can it possibly be September in a few days?  I am eager as most families to send my kids back to school, especially my son who truly needs the structure of a school day routine. I have to admit something though, I  am nervous about it. A different kind of nervous than the little butterflies in my stomach.  Like most parents, we want our children to have a good year.  As most of you know my little boy has Autism. I know when I tell people that truly don't know much about Autism they always say "well he looks normal to me". I don't know whether I should laugh or scream in those moments but that's is why I do what I do.  To help bring awareness and acceptance for my son and all the people that have Autism. This brings me back to my nervousness about the new school year. My little boy is in an integrated classroom which for those who don't know what that is, is a classroom that has a certain number of children that have special needs and the rest are all typically developing children. There are two teachers in the classroom so they can help target and support all the differentiated learning that happens. It is a great teaching model. I always get a bit worried and nervous about how he will fit in and to be honest as he gets older some of his behaviors make him stand out from the rest. The educator in me isn't bothered because I believe he will eventually learn how to control his tendencies to have outburst but the mommy in me just wants to wrap my arms around him and protect him from it all. When people ask me about my son I often describe him as an exaggerated 6 year old....I say he is just like any other boy his age but if a typical boy his age is has a hard time losing at a game well my son may throw a fit when he loses....see my point he is an Exaggerated six year old. Which make my nervousness exaggerated too.  I suppose some parents feel nervous about the first day but families with special needs children have all of these thoughts swirling in their heads. "Will the new teacher know how to support him if he has a meltdown?" "How will the other children react to him after they see him having screaming fits?"  "Will he get any invites for a play date this year?" and "Will his teachers see past his challenges to the smart, funny, and extremely charming little boy he is?"  There are so many thoughts swirling in my head but I have to trust him and all the hard working educators that are working to bring him to his best. I know I don't stop for a moment. I often wonder if the teachers find me annoying but I know the good ones don't. They know I am simply a Mom looking to have my son achieve his best.

My advice to other families in similar situations is to do your best to establish a good relationship with all the people supporting your child. This has worked successfully for me. I still get nervous at that start of a new year but I am learning to push down my nerves a little at time and express myself and his needs to those that help him. It actually helps me by doing this. I know there will always be bumps in the rode as his challenges are not going to simply disappear but we will face them as they come. 

New School Year

   As the new school year starts for my children, I get a rush of different emotions.  I am happy because I know what a gift it is to have an education.  I am excited because I think of all the new possibilities that my children will be given, new friends, great teachers, learning to read, the FUTURE... I am nervous because I will not be there to make sure that they are "okay".  I am sitting with expectations knowing this is a whole new year of great things to come.  I am having thoughts of fear that creep into my head but I am pushing those voices back.  There is no need for them to come to surface.  I am putting my energy into all the good that is to come.
    My daughter is starting Kindergarten this year.  She was so excited and nervous at the same time.  Filled with hope and questions of the coming year.  I shared with her how happy  I was for her and this great new journey in her life.  I told her how exciting it is that she will be reading. I cannot wait for the adventures she will be on when she starts reading her first books.  I told her that these great people you meet now will be your life long friends.  You will be doing so many fun filled things and I will be here standing in your corner everyday.  My job now is to learn when to step in and when to sit back and let her figure it out on her own.  She is the most amazing person I know!! She is filled with wisdom and has a great joy for learning. 
    My son started Pre-K today.  He was excited kept talking about the fact that he has a new teacher this year.  He was questioning me about who will be in his class.  I saw his nerves show through even though he couldn't really express that he was feeling nervous.  He was acting out with his usual behaviors.  I felt the fear creeping in... This is an important year for him, for us... This will determine if he ends up in our district school for Kindergarten.  I know it sounds silly to some but it is what I really hope for.  We moved  here for the great schools but also so my children could grow up with their cousins. I know they still get to grow up together but I have this vision of them all being in school together.  I know it is important for him too.  He heard his sister saying how excited she was that she was on the bus with her cousins.  He of course responded with " I want to go on the big bus with them too!!"  My heart sank a bit... I said "next year you will be".  As the words came out of my mouth my thoughts were "please God I hope so".  I am  thinking how could I explain to him why he is not in this same school as his family.  Well we have this whole school year to do what is necessary to make it happen for him.
    Having a child with special needs brings in a whole other equation of thinking.  I find that my thoughts are more detailed.  I feel like if I don't think of everything and make sure it is all perfect something might go wrong.  I was laying in bed with him last night talking about what would happen today. Just prepping him for the day.  He started talking about "earning" a "super token" which is basically a reward for his good behavior.  I felt panicked for a moment questioning "would the new teacher know about it".  I of course emailed his teacher expressing that he spoke about the super token.  I just wanted to make sure that he would have a good day. In case you haven't figured it out yet...YES!! I am a control freak.  Its not the easiest way of being but I am learning to let go and have faith that it will work out.  I will still do my part after all "God Helps those who help themselves".  I will start to let go of the fear though...it doesn't help anyone.  I will focus on what I have to do do get him what he needs to have a successful year. 
    This is what we do as parents...we walk the fine line of parenting  and letting go.  Isn't that what it is all about.  Raising our children to hopefully be independent confident human beings.  It is an art form of balance. One I am trying to figure out step by step.  We learn by reflecting on what worked and what did not.  We need to take the time to do that...reflect back and learn the lesson at hand.  The lesson I am learning now is that I have to just breathe... His teacher emailed me back saying she spoke all about his behavior plan with his other teacher.  I am learning to trust the process and be balanced.  I pray that God blesses all of our children with a successful school year. 

  

Educate and Adovcate

     I thank God for Early Intervention everyday. I know it was the key that helped to bring my son to where he is today. Before my son got diagnosed,  I was working as a teacher's assistant in a special education program. I learned h about Early Intervention during that time.  I worked in a Kindergarten through second grade program.  Some of the students came to us some from early intervention and some did not.  There was an obvious difference in the kids who had EI and the ones that did not.
    Early Intervention (EI) gives children the head start that they need to "catch-up" with their peers.  It is scientifically proven that the brain is still mailable from 0-5 years of age.  Therefore, you can create a significant positive impact on a child's future.  I personally saw the huge difference with my son from the beginning of EI to the end.  He was completely ready to be in a school program. You can almost look at it like building a house.  You have to start with a solid foundation in order to build up from there.  You need good materials and tools in order to build that foundation.  The occupational therapy, speech therapy, physical therapy, ABA therapy and speech group were those tools and materials for my son's  solid foundation.  We are now at the point that we are building on top of his EI foundation and starting with the "first floor" of his life.  Yes, it is  A LOT of work but anything worth having is worth working towards. 
    The steps of starting  EI  is typically your  pediatrician makes the referral for your child to be evaluated because some "delays" are noted.  However, that is not always the case.  In my situation it was me the was noticing the delays and really as I have stated before the "signs" were not so noticeable.  I could have easily chosen to say let me wait and see if he "out grows" this or "he is a boy and they develop slower". You as the parent also have the right to request an EI evaluation.  It is a tedious process but proven to be necessary.  You fill out lots of paper work and then various therapist come to your home to do an evaluation process.   My son was 7 1/2 months old when we started the process so it was me that was doing most of the talking.  They observed him and tried to see if he was age appropriate in terms of his milestones.  The "truth" is I was told by people in the field if I wanted my son to receive services I would have to "exaggerate" his delays.  I am not one to lie but the benefit out weighed the exaggeration of "truth".  The paper work processing took a few weeks and then I had a meeting with the "officials".  I had to sort of plea my case and talk about why I thought EI would benefit my child. It was at this meeting that I found out he was approved for OT and PT.  I was happy just to get started and the rest of the services soon followed.
    What I learned is that I was going to have to be my son's voice.  I was responsible to advocate for him and NOTHING would just be given to me because he needed it. We have this "wonderful" system in place to help the children that need it..but you have to ADVOCATE hard for everything.  I came across a few "city officials" that had no clue what they were talking about.  All they cared about was not giving services out so money would be saved.  I NEVER allowed that to be the case.  My advice is EDUCATE yourself...go in to all of your meetings PREPARED!!  You must act as though this is your career and losing your job counts on your job performance.  As a parent you also have the right to adjourn a meeting if you don't like the way it is going and never ever sign anything unless you are in agreement.  Another thing to reflect on is "you get more bees with honey".  It is not necessary to be angry or shout.  Represent your self in a very "professional" ,but not leaving until you get what you want manner. 
      My son was 18 months and he received his PDD-NOS diagnosis.  I thankfully had experience working with children on the spectrum but when its your own child it is a completely different ball game.  The thing I was also experiencing when your child is "high functioning" you are sort of walking on a fine line of what services they will receive.  I had many people say "your son talks", "he is social" therefore he is fine. Yes, I am thankful he is doing as well as he is.  We truthfully had a solid foundation to work with and just kept building up from there.  However, if it were not for the fact that he received 36 hours of EI up until he was three and a half years old.  I know he would not have made as much progress as he has.  The "officials" would read his test scores and say he is doing fine.  My response would be "Yes he is...however we still have a work ahead of us".  My example would be...your going on a road trip to Niagara Falls.  Do you stop driving 50 miles away from there just because the scene is pretty.  No!! You observe the beauty around you and keep on driving until you reach your destination.  My son at this point could not function successfully in a typical Pre-K classroom by himself.  Therefore, I will not stop ADVOCATING for him until I know he has what he needs.  This completely holds true for any child, special needs or not.  It is our role as parents, to bring the best possibilities to our children. 
    In retrospect of the past three years, I know in my heart that Early Intervention services was the key that opened up my son's successful future.  I also know how much time my family had to dedicate to this.  I mean it was 36 hours of people being in our home a week.  I would do all over again in a heart beat knowing what I know.  Educate and Advocate pass it on.

What will the Future Bring

     Having children is quite possibly the most life altering thing that has ever happened to me. I never realized how much hard work goes into parenting until I had my children. It is also not something you can necessarily explain to someone until they experience it for themselves.
     The responsibility of raising another human being into a loving, good, grateful, confident, educated, responsible, giving person is enormous. This also magnifies when you have a child with special needs. It leaves you with questions of the future that you may not have with a typical child. The fact is no one knows exactly what the future will bring. Special needs or not...life happens. However, I know in my experience I almost have this "secure" feeling that my daughter who is "typical" will go onto to achieving what she sets her mind to. She will have to work towards her goals and they will be accomplished. There are days that I feel that for my son who has PDD-NOS as well. However, I have my days where fear creeps in and I question if that is true. The reality for him right now is that he is doing fairly well. He just has to work harder at keeping his behaviors regulated.
     That is not so easy for a four year old to do. I often wish I could get into his body for a day to feel and see what he experiences. I often find myself observing him and I see there are certain things that just overwhelm and frustrate him more than the average person. He can be quite possibly the sweetest boy at times and yet he can be very oppositional. We have days that just seem to run so smoothly and on those days I feel secure that everything will be fine. He will figure out his path and the worry seems to subside. He has other days that the slightest things that seemed so effortless, are now overwhelming.  For example, we were using a visual schedule to help him complete his morning routine (brush teeth, take PJ's off, put clothes on) independently. This took him months to "master" and he would often just stand there screaming. God has sent me massive amounts of patience and endurance and we got through it. We are now at the point that he doesn't require the schedule on a daily basis. He knows the routine and on most days completes the task. We do however have days for reasons I wish I knew he just gets "stuck". I know and can see that part of him wants to do it but something in his brain is preventing him. He just starts screaming "no I am not doing it". I just have learned to ignore his inappropriate behaviors and stay as calm as I possibly can. Believe me when I tell you IT IS NOT EASY!! I just want to scream "Just Do It" and believe me there have been days when I have. I know what some of you are thinking...really he is four what are you expecting. Yes, I often think that too. I think is this typical behavior or not. The answer I came up with is that some of it definitely is. However, the fact that you can see him struggling with it... there is this part of him that wants to do it. In this case "it" would be complete his morning routine. In most cases with a "typical" child not doing something is because they have something else that they would prefer to do. For example, watch TV, play a video game, etc... My son just gets "stuck" he will go to start and then just stand there staring off or just start screaming. There are also times where he will start the routine and then get thrown off by something like he can't get his hand through his sleeve. Instead of asking for help he will scream completed strip down and run around in complete frustration. On these days I just feel the worry consume me. On these days I just want to scoop him up and do it for him but I don't. I can't, if I want him to be successful in the future. He has to learn how to appropriately work through it. When he has his "good" days he feels so proud of himself. He tells me how happy he is with himself. It is in those moment I know all of the work we are doing will benefit him now and in his future.
     The other thing that occurs is that there is almost a double standard for my daughter. I often battle with this in my head. I mean if she is screaming her head off, I just give her the look and ask her to go sit quietly and think. My son will also become aggressive with me at times. The course of action I take with him is to ignore his behavior unless he is putting himself or someone else in harms way. This has worked to greatly decrease but not completed stop a lot of his behaviors.  I don't do that with my daughter for some reason.  I expect her to get it and give her more consequences to her actions. Is that a double standard I suppose it is. Each child is unique and different rules apply. ...but I am learning that any behavior you feed into will grow. Therefore, actively ignoring the negative will reduce it and greatly reinforcing the positive will increase it. It is a work in progress for my husband and I.
     We are just two human beings praying that we are doing the "right" things for our children. Praying that all the work they are doing now will only benefit them in the future. As for the double standard with my daughter. I am getting over feeling that way. I started to realize as well that there are many things she gets to do and have that he does not. These are the joys of navigating through parenthood. Each day is a gift no matter what package it may come in. It is our responsibility to learn from it and pass the lesson on to our children.

Potty Training...

    The first child I ever potty trained was my daughter.  It was definitely a learning experience.  She was a very bright and advanced child from very early on.  She was about 18 months and told me "Mommy, potty".  I looked at her and thought really you want to go to the potty.  I figured okay so I put her on well sure as anything she "pooped" in the toilet.  I could not believe it.  I thought, wow this is going to be so easy.  I don't know why people make such a fuss about it.  Well the reality of the whole thing is that she wasn't ready.  Yes, it was amazing that she did that but she had accidents everyday.  I was not consistent with her and the end result it we were both frustrated with the whole process.  She wasn't officially using the toilet consistently until she was three years old. 
     Learning from the "mistakes" I made with my daughter I was hesitant to do the same with my son. The fact that he has PDD-NOS was also something I thought about. The thoughts going through my head were "is he going to connect to this".  He had such a low frustration level and was so easily distracted.  I was anxious about the whole process.  He was in early intervention at this time and during one of my meetings with all of his therapist someone brought up potty training.  I automatically replied " I am not ready yet"  The key word there is "I".  I was anxious, tired, and stressed out about my life already did I really want to add another thing to the mix at the moment.  I knew I had to though, I knew the end result would make all of our lives that much better.  He was almost three at that point so I told the "team" I am setting a pottry training start date.  I knew I had to be mentally ready for this to be a success.  I wanted him to turn three and then we would start.  The day came and I was PREPARED.  I knew there was no turning back once we started.  I used tips and techniques from the "team" and we just jumped in.   He was potty trained in under a week.  I was so overjoyed and my son was so very proud of himself.  It took ALOT of hard work and the thing that connected if him was the consistency throughout the "training" time.  We also used ALOT of reinforcements to help him want to do it.  Below is a sample of the strategy I used.  I hope it helps other families with the process.

Potty Training

Goal:  To Potty train your child and have it be fun and successful.

Understand if you child is ready by looking for signs.

1.   Do they know when the have to do “pee-pee” and  “poop”

2.    Do they go to another room or in a corner where they think no one can see them to “poop”.

  

    Purchase items so you are prepared.

1.   Potty seat.

2.    edible treat you will only use during potty training (ex. Fruit Loops)

3.   timer (VERY IMPORTANT to be consistent)

4.   fun preferred character underwear-(my son loved Thomas the train and did not want to get Thomas dirty)

5.    “Super reinforcing toy” (ex. IPAD or Leapster) You ONLY allow child to use this toy if they do "pee pee" or "poop" in the potty. They cannot play with this at other times because it will lose to reinforcing quality.

    SET POTTY TRAINING START DATE…NO TURNING BACK!!

    Procedure

 

1.         Have child drink lots fluid whatever is preferred.  You want them to really have to go to the bathroom A LOT!! You may want to give them a salty snack so that they are thirsty.

2.         Bring child to the bathroom every 10 min. Have child pull down pants and touch underwear to “check” if it’s Dry.  Reinforce dry underwear with lots of verbal praise and edible reinforcer ( 1-2 fruit loops).

3.         Once in the bathroom have child sit on toilet for 2 min.  Praise them for sitting on the potty and use edible reinforcer when they get up.

4.         When they do “pee-pee” or “poop” in potty.  Praise them and allow them to use the “Super Toy”(IPAD) for 5 min. 

5.         Repeat all above steps until they understand concept.

6.         Each day you can extend timer by 5-10 min for going to use bathroom. Do not exceed 30 min until concept is completely understood.

Eyes Wide Open

     When I was pregnant with my daughter I was so overcome with emotion.  I would stare at my belly in wonder and think "WOW" how truly amazing is it that this little human life is growing inside of me.  I wanted to do all the right things as most first times moms do.  Of course I read "What to Expect when Your Expecting".  I got plenty of rest and did all the "right" things. 
I often was on Babycenter.com almost every day.  I loved reading about what was going on inside my belly.  I always asked a million questions at every doctors appt.  I had gotten a phone call from my OBGYN one day saying one of my test came back showing a high risk for Downs Syndrome.  I was devastated they sent me for genetic counseling and I was told the only way to know for sure was to do an Amniocentesis. 
I was not sure what to do. The thing I knew for sure was I loved her already and whatever the outcome was going to be this was my child.  I chose not to do the Amnio.  I had another important decision to make I could either enjoy being pregnant or I could be fearful for the next four months.  I prayed which helped me to push my fears aside.  I truly did enjoy being pregnant and the minute she was born I knew she was fine.  I just looked her and felt it in my soul.
     So there I was pregnant again not so long after and I refuse to have the blood work that showed high risk for Downs Syndrome with my daughter.  I just figured why go through that again.  All of my sonograms were normal so I was feeling good about everything.  He was born and like  I have said before I knew something was "off".  I am thankful every day I could recognize it so early on. 
     My hopes in sharing all my life "stories" is to help someone who may be wondering the same things I was.  What I know for sure is that "Time is of the Essence" with starting intervention with children who need help.  It is scientifically proven that the brain can be changed from 0-5 years old.  This is why Early Intervention is essential in helping our children to succeed.
     My daughter was in preschool and I would go to drop her off and pick her up.  I would see the other parents with their children too.  There was this little boy in my daughter class that I was drawn too.  I went home that day wondering about him why couldn't I stop thinking about him.  I went the next day and saw him again I stopped and before I knew it I was in a daze staring at him and his Mom.  I couldn't help myself in that moment I realized what it was, he reminded me of my son.  He was clearly stimming.  He had little speech and was so anxious and over whelmed about school.  The mom caught my stare and started making excuses for him.  I wanted to cry.  I felt her pain and knew all the thoughts that were running through her head.  She looked over at my daughter and said "Wow, she is great she talks so much.  I think my son has a speech delay."  I was floored ... I thought for sure she must have known.  I went home consumed with thoughts of her and her son.  I wanted to tell her something but how could I.  Seriously, who the hell did I think I was wanting to tell this woman that her child was probably on the spectrum.  I decided to approach the teacher.  I had already shared with her that my son had Autism so maybe she would help out.  I started by saying I noticed that so and so has some behaviors that may indicate he is on the spectrum.  She looked at me like I know but why are you telling me.   She told me its not really her place to say anything.  I left there feeling frustrated and completely unsure of what to do.  I never told the mom what I thought but I did share with her that my son was on the spectrum and I could refer her to a great speech therapist.  I still find myself thinking of them.
     I often wonder why some people have their "eyes wide open" and others  not so much.  I get not wanting to admit that there may be something "wrong" with your child. However,  I know from experience the only thing denial is doing is not getting your child the help they need.  Our children are born into our care.  I define that as meaning it is my responsibility to do everything that I possibly can to ensure my children grow up with the self confidence that will get through any situation.  If you have questions or doubts whirling around in your thoughts...NOW is the time to act on it. If you are not getting the answers that speak to your concerns don't stop until you have them. We are blessed right now with having access to many resources that can help our children.  I understand the fear and anger that comes with acceptance.  I felt I had no time for that.  I had to push through the fear of diagnosis and help my child.  I had to jump in with my "Eyes Wide Open" and put my trust in God that all would be okay.  I am hoping that what I am sharing will help families to move forward.  This is intended for all areas of our lives that need to be forwarded...JUMP IN!!