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.