Hello everyone, we wanted to share with everyone something amazing that happened to us last week! Adrian has begun to say his name randomly. On Sunday morning, my sisters-in-law were in town and one of them was taking a video of our twins talking while in the background Adrian was walking around making noises, or what a lot of people who know Autism call stimming. All of a sudden, though, we heard, “Ah-gah—Adriaaaan.” I couldn’t believe it! Our child, who has not said a full word on command yet, said his name. On top of that, during the stim right before saying his name (while looking at himself in the mirror, might I add), he made a “g” sound, which is a sound we’ve been working on for months. I was so excited to hear him and I couldn’t believe it.
His therapist along with his teachers (and us) have been working with him so much and he is responding, can you believe that?!
What a breakthrough for our family! We are excited beyond belief; it’s true to say with faith as small as a mustard seed anything is possible and God is good all the time!!! This may not be such a big deal for everyone but for us it means the world.
I feel it’s important to tell you this: don’t give up. I know it can be hard when what we face seems so much bigger than us. When everything is falling apart, and there seems to be no light at the end of the tunnel. I know and I can tell you there is a bigger God. Every situation is different and I know the outcome may not be what we want but maybe this is our time to grow and see what happens. There have been days of exhaustion, tears and fears of the unknown, the feeling of being isolated from others because no one understood our son, the anger of why me, and why us, and why him! But because of this, I know this is only the beginning, there will be more hurdles to jump, more obstacles to face, and more milestones to cross. But we are not alone, we have never been alone, and we will never be alone. God has proven to us that he has been there for us thru each step of the way. And as long as he is with us we can do anything! God is faithful and his plan is perfect!!!
This year in particular seems to have brought more pain, disappointments, tears, fears, discontentment and much more. Others have been hurt, have lost loved ones recently or over the years, and the hurt, at times is too much to bear. People think, what’s to celebrate? It’s that time of the year when holidays are around the corner and everyone begins to get busy with family gatherings, shopping and worrying about getting the perfect gifts.
However, I wanted to take the time to reflect and to thank God for the blessings in our lives. Inspite of all of the negative, I found myself wanting to see the good that has happened specifically in my family life and in Adrian’s life. We have been extremely blessed because God has put special people in our lives at the right time between. People come along at the right time with an encouraging word, a hug, helpful advice and or just a helping hand. You have heard me say that Adrian is truly a special boy. Without saying a word, he makes you fall in love with him. We have had people come into our lives who have helped and shown me what it is to advocate for our son: not just to respond yes to anything that has been said or recommended to me for Adrian. People have offered their expertise, have directed me in ways that I could never have imagined. I know that the source of this direction is God. These individuals have offered their help with open arms and have never asked for anything in return. For that I, am forever grateful.
Because of all of this, three years ago we decided that we wanted to be a blessing for other families as well. We have been able to give back to the community and want to grow to bring hope, and a glimpse of light to an area in our life that at times seems dark and lonely even when do not believe that there is no “good" in sight. We are extremely grateful for those people who have taken the time to open up their hearts and lives to us who without questioning us, have said we are here if you need anything. See, we have all said it, but I have experienced it because people have allowed their lives to be interrupted to help us.
As for us, we hope we can be like those who have an open heart and put people's needs first before our own because at the end, our God will supply our needs at the right time and on his time. Let’s keep our minds and hearts open to see where people are hurting and show our kids that putting people first is one of the biggest blessings and satisfactions we can endure. So this Thanksgiving, let’s take the time to reflect and really think of the good things that have happened and not just the superficial or materialistic things we have. Let us all think of something from within that has left an imprint in our lives.
I have been meaning to write about my experience this last month, but did not have the chance too. Last month, my husband and I attended a training called LAMP. I am not sure if you have heard about it, it is a program that has been incorporated with an iPad or another device. And what this does is open a line of communication for our children. I was told about this program about 3 years ago thru the school that Adrian was attending during the time. At that time the device did not work for Adrian like we thought it would and we discontinued the use of it. We fast forward to now, it was recommended by his Occupational therapist who said that he could possibly benefit from it and to go to the University of Miami for more information and well that’s what we did.
Adrian is seven years old non-verbal and well as you can imagine, because of the language barrier, we encounter a lot of his behavior problems and meltdowns. In our house we have learned how to interpret his needs and wants but it was getting a little frustrating when we would go out and not know what he was thinking or feeling. That’s when we decided to find more information regarding this program and device. We were asked to participate in the recording of him using the device during the training. We were able to see him interact with the therapist and how he noticed that he had some kind of voice thru this device. This training was geared towards speech pathologist, OT therapist, PT therapist, parents and students. At one point in the training as they were showing the videos that were taken there was a question that was directed to all the therapist on Adrian’s video and how he was doing with the device. Most of the therapist of the room agreed that Adrian would learn it very fast and that we would see results.
We have a long road ahead but what was so encouraging to us was the fact that we were being shown videos of children and young adults that were considered non-functional and non- verbal and that did not have cognitive motor skills to communicate and how the device helps them to communicate with people. We saw a significant amount of change in their behavior. It was like almost a 360 degree turn of the child that was before to where they are now. For the most part people see the children and young adults as a waste of space and or think that parents do not have control of their child but that is not the case. The majority of these individuals are very smart, they just think differently than us. This does not make them weird but makes them unique.
“Just because they cannot talk does not mean that they don’t hear.” Wow! This was mentioned in the meeting and will always be present with me. That blew my mind and I thought how many times have I said something negative about him around him not because I am a horrible mother but I forget he can listen to me. I have been extra careful since I heard that, because my words are very powerful to my children and I want my words to empower them versus destroying them. All of the children we saw on those videos have something in common, they all want a sense of belonging and want to succeed and have dreams that they want to accomplish. But they need people to believe in them and to take the time to work with them, play with them and most importantly to love them. These individuals have the same goals and thoughts that we have all wanted so why do we make it so hard for them? Let’s work together let’s push these individual to be the best that they can be and let them know they can do it if they believe in themselves and know they have the support that they need.
Another School year has come to end!
This is the time of year when we celebrate graduations and promotions to the upcoming grades and or phase of life. As some celebrate this new chapter in their children’s lives, other families struggle with that next chapter of life. As I sat through my son’s end of the school year show, I cannot help but look around at a room full of people who share the same thoughts, concerns, fears, and life lessons that life itself has thrown at us. As I observed everyone’s actions and/or reactions, I could see so many emotions evolving. I would like to share a little bit of those feelings; I can say there wasn’t a moment when you didn’t see tears of joy, happiness, fear, uncertainty, relief, and a sense of the unknown. But I would have to say the most tears came towards the conclusion of presentation. They were honoring the seniors for accomplishing one of many hurdles they have had to face; a feat parents possibly thought they would never witness, but they did!
What a lesson it is to be able to witness success and know that they worked hard for it. Before they began calling out the names of the soon to be graduates, they showed a presentation of the graduates’ pictures as babies, then kids, and now as seniors. I have to say my heart ached as I saw those pictures go by. You may ask why? Well, I can honestly tell you that I could see my Adrian as the baby pictures went by. I noticed how they looked like neuro-typical children and then we were faced with the word “autism.” I remember so vividly the day when he was diagnosed with “autism” and when I was no longer part of “his world.” I had to learn how to be part of his world all over again. I felt like I lost the emotional connection I had with my little boy. I felt so helpless when that word became part of our lives, but I knew that I needed to get into his world never knowing the lessons I was going to learn by looking through his eyes. Even though we are not where I would like to be, it is closer than it was 4 and half years ago, and I have to say we have a special bond. My expectations for him remain the same but with room for trial and error. So as I sat there and saw the pictures, I could relate to the moms in that room today.
A quick note to my fellow moms:
Our days may seem long and with no end in sight, and we may wonder if there is light on this dark road. Our days are cluttered with therapies, doctor’s appointments, meltdowns, picky eaters and possibly a full time job. But I am here to tell you that you are not alone. It takes a special parent to have a special needs child. I have always believed that. Believe it or not, I never saw myself as a special parent. Just know that you are special, and you are the perfect parent for your special child. So when the day seems like it is too much to bear, look ahead. There is light, we just have to walk forward together.
And finally to our Adrian:
My sweet boy!
From the first day you were placed in our arms, we knew we loved you with all of our hearts. You will never know how much you have taught me in your almost 7 years of your life. You have given me life lessons that I would have never imagined, and yet I wonder if I am even doing things right. I wonder if I am half the mom that you need me to be. Then I look to God and ask him to guide me in walking with you into his path. I want you to know that I am so proud of you, and I always will because I know that you will make a difference in people’s lives. You are a special little boy who, with a smile, can win the heart of many. Our prayer for you is to reach for the stars and fly. Stretch your wings my son because you will go farther than you will ever know. We love you.
I wanted to share something that a friend of mine gave me to read some time ago. As I read it, it brought tears to my eyes because I understand it and felt it at times. When reading this I felt that GOD wanted to reassure me that he is in control even when I don't have the answers and solutions when I have so many unanswered questions. But my God is awesome and he has given me an angel (Adrian) to show me a little more of what's like to have to depend on him. So here it is.
I AM THE CHILD
I am the child who cannot talk.
You often pity me, I see it in your eyes.
You wonder how much I am aware of -- I see that as well.
I am aware of much, whether you are happy or sad or fearful,
patient or impatient, full of love and desire,
or if you are just doing your duty by me.
I marvel at your frustration, knowing mine to be far greater,
for I cannot express myself or my needs as you do.
You cannot conceive my isolation, so complete it is at times.
I do not gift you with clever conversation, cute remarks to be laughed over and repeated.
I do not give you answers to your everyday questions,
responses over my well-being, sharing my needs,
or comments about the world about me.
I do not give you rewards as defined by the world's standards -- great strides in
development that you can credit yourself;
I do not give you understanding as you know it.
What I give you is so much more valuable -- I give you instead opportunities.
Opportunities to discover the depth of your character, not mine;
the depth of your love, your commitment, your patience, your abilities;
the opportunity to explore your spirit more deeply than you imagined possible.
I drive you further than you would ever go on your own, working harder,
seeking answers to your many questions with no answers.
I am the child who cannot talk.
I found much comfort in reading this because I have found much of it being true in my life. See if I really start to put this all in perspective I know, this is what God wanted in my life to move forward. Now I am not saying that I am happy that my son can not talk and has difficulty expressing himself, what I am simply saying is that he has made me a better person. It has shown me that I have had to come out of my comfort zone and realize that it has never been about me. God has taken me thru situations that I would never imagined, we have gone over many hurdles in the last 4 years of our son’s life that we would have never even imagined. I have had to look deep down inside to see who I am, I’ve had to stand when all I wanted to do was disappear. Regardless of Adrian’s condition, diagnosis, and or label he has an amazing ability to love, and figure things that we could have never imagine. He has taught us that we have to leave our comfort zone and move forward. I am sure that life would have been different if Adrian could do everything the poem says, but I would have missed out on the challenging road we are currently on, GOD has a purpose in life and it is up to us, if we will choose to run with it or if we will just stay complacent and wonder why me? At the end, we will always love our son who cannot talk.
Hi Everyone best wishes for 2017.
A couple of weeks ago we went to Disney to celebrate our twins birthdays. Before the twins were born, we had taken Adrian to Disney and he has usually loved going. This trip seemed a little different not sure why. Maybe because the parks were so full. Or maybe it was because he realized it wasn't just for him and that he had to share these moments with his siblings. One of the biggest moments for him was when we went to have breakfast at the Polynesian with Mickey, Pluto, Lilo and Stitch. Granted we have never seen the movie before but when he saw Lilo he was actually so excited to have seen her. He didn't react much when he saw Mickey or any other character except for LILO. He actually wanted to hold her hand and the smile that came across his face when he saw her was priceless. It was a great moment, but as I walked thru the park I could not help but feel sad at times. As the twins watched the parade and enjoyed seeing the characters I would look at Adrian and wonder what was he thinking did he liked it? Was it too much stimulation for him? Did he think I used to come with mom and dad alone and now my brother and sister are here? At times he is in his own world and I just wanted to be apart of it with him. I want to hear what's on his mind and on his heart. But yet that moment has not come to us yet. Not sure when it will come I pray that it will come soon. As 2016 comes to an end it has been a year of many blessings, some with tears others with laughs and others with many uncertainties of life. As 2017 begins, our prayers is that God take full control of this upcoming year. It will be a year that we will be able to see Adrian progress (God willingly) and move forward. That we may be able to look back and see how God has blessed us like this last year. And see how our kids grow along side of each other loving on each other and taking care of each other. With this being said, I hope everyone has a Happy New Year full of love and blessing for this upcoming year. May this new year be a good one. Have an awesome 2017 everyone
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Well we are back in full effect for this school year and it has been hectic. I find that one of the hardest things of being a special needs parent is wonder if what you are doing is enough and if I am making the right decisions. I have found myself in a spot lately where I am second guessing myself and the decisions we have made for Adrian. I can't help and look at him and wonder what the future holds for him will he ever speak, will he be independent and do things on his own. Will he need constant supervision, he will he be able to defend himself in a world that is so cruel and cold hearted. And my answer to this is I do not know we are trying to bring him up to do all these things but at the end God only knows. And I have to grab onto God to help us on a daily basis to get thru daily. I never knew how hurtful people could be until my son was diagnosed with ASD. And what parents go thru on a daily basis as a mom I feel the hurt, I feel the stares, the judgements and sometimes even the comments. And even though we treat our son like his siblings and like any other child sometimes we will refrain of going places because it's just better to be in our safe zone then having to confront, see or hear what others have to say. But no matter what God has given us a reassurance that he is control and I can't help but remember the following verse "Be still, and know that I am God; I will be exalted among the nations, I will be exalted in the earth." Psalms 46:10. To those parents who have felt the same things that I have felt know that you are not alone. Some days may be harder then others but know that we have been chosen to be a parent of a special child and in spite of how our child is they are teaching us something that we would have never learned if they were our typical child.
It's been a while since I have blogged and I do apologize for this but I am back and ready to conquer what's in front of me.
These last couple of months have been very busy with schedules full of different activities like the end of the school year, doctors appointments, graduations, our very first fundraising event, and family visiting. Let's just say things have never been so busy. But I have to admit it has been a time where God has once again shown me that he is in utmost control. It never ceases to amaze me how things all work for the good. As any parent, I have doubted my parenting skills especially with Adrian because of where he is developmentally, I often wonder if what I am doing is enough. Am I doing everything to help my child? I wonder that every single day. I guess I could say something is working. See about two nights ago we were in our routine of getting everyone showered and ready for bed. We had just finished with Adrian. My mom was sitting on the couch with Aby (that's my daughter) and Adrian went to sit next to my mom. I was putting things away when my mom calls me out to see the kids. To my surprise Adrian had his head on my moms lap and he was actually letting Aby touch his hair and his face. She would put her head against Adrian's and he let her, it melted my heart that he would let her do that and I say that because he doesn't really like having his siblings in his space or to even touch him. Then yesterday, it happened again another moment of interaction but now with AJ (that's his brother) I was getting ready to leave to take Adrian to school. Adrian was sitting in a chair that used to be his but we have taken out for Aj. AJ went to the chair because he wanted to sit there but Adrian pushed him away and Aj fell down and started to cry. As I was watching this my first instinct was to reprimand Adrian but I realized that Adrian didn't do it with malice he just doesn't realize how strong he is, so I go on to tell him "Adrian you need to be gentle with your brother he is smaller than you" as I was telling him this he looked over at Aj who was on the other side where the couch was, so I proceeded to tell Adrian "you need to give your brother a kiss". It was like they both understood Aj walked over to Adrian and when he was close Adrian took Aj by his arm and gave him a kiss on the forehead. At that moment I realized maybe I am doing something right. I want my kids to love each other and take care of each other. When I saw this I realized they know and they will be ok. And once again God comes and shows me he is in control. This is a one day at a time, sometimes I get overwhelmed just to think of what the future holds for us. My stomach goes in knots just to think of how Adrian's life is going to be. But in it all I have to trust that God knows everything and I don't need to know it all I just have to take it day by day.
I wanted to share something that I hold close to my heart as a hurt and a reality for families out there as well as our very own. But before I share what’s on my heart here is insert from the author Levi Lusko: “God trusted me with this trial for a reason, just as he saw fit to give you your cross to bear. And the more impossible your pain, the more incredible the power he will bring out of it. It’s his rattaouille-his specialty, a signature move that he has mastered. I heard someone once say that God gives his toughest assignments to his most trusted soldiers.”
Have you ever been in a public place and your child has a meltdown and you feel people’s stares and judgmental comments? That is a hard thing for a parent, as each parent’s reaction and approach is different than our own. But as a parent of a child who does not speak and has autism it becomes a little more anxious and hard. It is automatically assumed since he looks normal that he is acting spoiled in which is not the case. What they do not know is that he cannot express himself; sometimes he cannot transition for one thing to another especially if it was something that he really loved to do. There have been videos that have surfaced of families of special needs children who are treated wrong or are even looked at if they are bad parents because they cannot handle their own children. Little do people know what these families go thru on a daily basis behind closed doors. These families refrain from going out just so they do not have to deal with the looks and or comments. If we all would look beyond that and see that every child, every youth and adult that have special needs are special people. We can learn so much from them if we would take the time to see beyond the obvious. Our son has taught us to look at life through his eyes and sometimes that is the best way for us to be a part of his world and for a split second see a glimpse through his eyes. Many people can’t see that glimpse because they do not want to see how special these kids are. They have feelings and aspirations just like we do, so if there is something I could suggest when you see a family going through a hard time with a child, do not make it uncomfortable for the families. Families have it hard enough than to feel uncomfortable and frustrated because someone is next to them giving them a hard time. If you are at a restaurant offer if you could assist them or offer a simple smile that says don’t worry it will be ok. Before I had children, I always said it took special parents to have children with special needs because not everyone could handle it; never thinking that I would be one myself. There are days that life seems more complicated and that we do not think we can handle this path that God has chosen for our family. We did not ask for this journey but God thinks and knows that we can handle it and hope never to disappoint him.
These last couple of days my mind has been, what seems to be a blur with life’s everyday struggle and the extra stuff that we don’t count on happening. One of the things that surpassed everything this last week was an appointment that we had with Adrian’s biomedical doctor, which we found was encouraging. See some may say or think that we may be complacent with the world’s definition of autism. But this doctor has given us a little bit of light and hope for the future. Although we know that at the end GOD will ultimately do his will in Adrian’s life. With that being said, Adrian has been seeing a biomedical doctor for over a year and half and we have seen some significant changes with Adrian. For example:
We have been able to control his eczema and his colds.
His eye contact has gotten better
He participates and interacts with other children.
This is only a few things to mention.
We went last week for a follow up and I have to admit that I was a little nervous for this appointment. Not sure if it was that I was expecting a negative response or if he was going to tell me something that I did not want to hear. I am glad to report that it was not all bad news. We did get some good news the doctor did mention to us that Adrian has some form of Apraxia that causes difficulty in putting sounds and syllables together in the correct order to form words. This brought us a sense of hope because we thought it was because he did not want to talk, but that is not what the doctor told us, he mentioned to us that it was clear that Adrian wanted to communicate with us, its just that he can’t process what he wants to say. Therefore the doctor believes that if we continue giving Adrian the supplements that he needs this could possibly help him say something in the near future. One of the hardest things for us to do is wait for something to happen. I have a friend who told me “…that if it’s not granted here on earth, it will be granted in heaven!...” I keep holding on to the promises that GOD gives us and know that one day I will hear his voice and see him communicate. I have found that our biomedical doctor has important information for people to become more aware. Please take the time to read his blog.
My name is Gail and I am a mother to three amazing children, Adrian (age 8) and a set of twins Aby & AJ (age 4). I have been married to my best friend for almost 13 years and I’m so thankful God blessed me with a supportive, loving man after God’s own heart. Our family is blessed in so many ways and to even describe how thankful we are for His love and grace is beyond words. One of our favorite verses that we love is.. “But seek first the kingdom of GOD and His righteousness, and all these things shall added to you” – Matthew 6:33.