Today was the often dreaded I.E.P.

I do not think I have made it through one IEP without crying before, during or after.  I think we have the most painless IEP of any IEP anyone could dream of, but talking about my kid’s education, their future, their accomplishments and their struggles stirs all of the emotion inside of me.

For those of you who do not have a child with any sort of developmental disabilities an IEP is an Individualized Education Plan that lays out the services your child will receive for the year. To the average person that sounds pretty painless. But unfortunately the public system is so skewed that it is anything but painless for most parents. It’s weeks of stress before, during and after until you sign in  your own blood, sweat and tears to finalize it.  It involves  teachers,  principals, the regional center, therapists, consultants and sometimes lawyers. The IEP has become a battle ground and war zone pinning parents against faculty to get the services our children need.

We are lucky enough to attend a wonderful Charter school where the dreaded IEP is not a battle ground, but a conversation. It is a dialog between our team.  Our team consists of a Special Ed Coordinator, principal, teacher, therapists, our home ABA company and my husband and I. And we sit at a table, and we talk about Mateo’s accomplishments ( pages of accomplishments) and we talk about his struggles, we talk about his fun personality, and about his ability to make everyone in the room laugh. And in my IEP, everyone in the room knows Mateo. There are no strangers telling us what’s best for our child. They are the people that know his strengths and where he needs help. We laugh, and smile and of course I cry. Not because they are against us and fighting our suggestions, quite the opposite.  In our discussions of his transition I tell them I am concerned about the 2nd graders in this new class.

You see, Mateo has had the same class for Kindergarten and First grade. They all know him and his silly personality, they know he stims when he’s excited or anxious, they know he may break down when frustrated, they support him and love him for who he is. But it’s all about to change. No longer will they all know Mateo.  They will be bigger and let’s face it meaner than most Kindergartners. And I worry for him. I worry a lot! I worry they will be mean to him, and hurt his sweet nature. So as I tell the team my fears, I try to push the tears back. The Special Ed Coordinator is holding my gaze, and trying to be supportive but the tears fall anyway.   I feel embarrassed, but my kids mean everything to me and every worry and fear I have is for them.

But we develop some strategies and ideas together. We are setting up meetings with his new teacher to develop a transition plan.  We are deciding how to handle the new students and discussing Mateo and Autism.  Our goal is to create a positive and happy environment for him for the next two years. Not just my goal, it’s the team’s goal.

My wish is that all of my Autism parents out there could have a TEAM for their IEP.  I wish they could work together on the computer typing up the goals for the next year, providing input and not us versus them.  I wish that an IEP was always in the interest of each child and not cause so much strain and stress on the parents.  I wish it was a place of smiles and laughter and not a battle ground with blades drawn and names signed in regret or anger.  I am here to support you all as we wind down from IEP season.  You are all the warrior parents who have gotten us this far, and who knows, maybe together we can change the system to be about the kids.

When you realize your child really has grown up, time to say good-bye to ABA.

Look at that stride!

Mateo has started track with his sister this year and it has been so great for him. Not only is he out getting the exercise his body needs so much, he is participating in a sport, making friends and having a great time. Did I mention making friends? He is coming so far socially. We just had his IPP (Individual Program Plan) that we have each quarter as well as his annual review, and at the end of this quarter is almost to age level at many of his benchmarks. Each quarter I am always amazed at where he began and where he is today.

We discuss his development as well as concerns during the IPP. And as we are talking about transitions and how well he is doing I heard the dreaded words- FADE PROGRAM. I knew it was coming. Mateo is now 7 and has been receiving ABA for 4 years. For four years he has been working 40 hours a week in school and therapy and I know he’s ready to end ABA. But am I ready? I know once it’s gone, it’s gone. We won’t get it back. And if he regresses or stops progressing, what will we do?

So I put my fear aside and I take a good look at Mateo, and I see his growth, his intelligence, his independence and I know in my heart that it’s time for him to graduate from ABA. I am very proud of all he has accomplished. He can do more activities now, he will have more time to focus on school work, he will have time to play with his friends from school, to go to the pool, and to just be a kid.

Since the age of 2 he has had a packed schedule, we have had people in and out of our house more than three days a week- usually closer to 5. Mateo has never really known any different, but it’s been far from what most kids his age experience each day. Most kids can have time for T-Ball, watching TV, playing video games, but not Mateo his schedule was always too packed. I can see the frustration in his face when he’s tired of ABA questions. Some days he is just not in the mood, after being at school from 8-3, who can blame him. Some days he loves it and is right on target, but I honestly don’t think he will be sad to see ABA go.

ABA will be faded and gone by August. Reuben and I will be filling the role and working with our consultant to handle any behaviors or issues that come up. We will also have to fill his time with social activities so he doesn’t become bored or regress.

ABA has been the most amazing thing for Mateo. It brought him from the developmental age of a 12-18 month old when he was almost 3, to where he is today, practically at age level across the board. We have met some amazing friends, people that made such a huge difference in his life and ours and I am excited to throw him a big graduation party! This is a huge step in his life, one of the biggest and I couldn’t be more proud of him.

Making friends

This is post 100!! I feel like I need to step it up a notch, I am feeling the pressure to write something very prophetic and moving. But all that I can think about right now is about friendship.  When Mateo started school in Kindergarten and we decided to take the direction of Main Streaming, even though our school district didn’t necessarily ‘recommend’ it. I remember one of my biggest fears was that he have trouble making friends. Would the children accept him? Would they choose to include him on the playground or would they be forced to by an Aide? Would he have real friends?

The truth is besides my incredible husband and children the one thing that has brought me so much happiness is friendship.  The  amazing friendships I have created over the years have touched my life in such a positive way.  I have always been a very social person and see a lot of myself in Mateo.  He has always wanted to be in the center of the action, he has always loved playing with his sister, cousins, our friend’s children. But would these new kids want to play with him?

Mateo has been with the same class for two years and I will tell you in those two years he has made some true friends. Accepting and caring friends that look out for him, they help him with his struggles without an adult telling them to. They include him on the playground without anyone asking.  He is included because they enjoy his company and spending time with him. He jumps around and stims on the playground, but no one turns a head, no one stares, no one draws attention to him. He is just himself.

Mateo’s birthday party is this Saturday. I was told on the phone by one of the Mom’s that Mateo is her son’s favorite kid in class and he was so happy to be invited to his birthday party. As my husband dropped off cupcakes kids from all different classes and grades were wishing Mateo a Happy Birthday. He is so loved. Truly loved and accepted for the amazing kid he is. And I am again moved and hopeful for the future of all of our kids with Autism. Maybe Autism Acceptance isn’t as far out of reach as we think.

Next year is a whole new class, a new classroom, a brand new teacher. And again I am worried for him, but maybe I should have more faith in children and the fact that Mateo is just one cool kid.

A Birthday Letter to Mateo

Dear Mateo,

Today you turn 7 years old. I honestly cannot believe it has been 7 years since I first held you in my arms for the first time. And in those 7 years you have faced many more challenges than many 7 year old boys have had to. You have been born with an incredible mind, a mind that works much differently than many people, and I know it causes you many struggles, but you face each one head on.

I just want you to know that your father and I will always be here for you, through whatever challenges come your way. I want you to always be proud of who you are and your incredible mind you have been given. You have come so far in these years, and touched every therapist and friend who walked through our front door with you incredible personality and warm heart. You have made me a stronger person, and taught me so much and I want to thank you for that.

I just want you to know that your father, your sister and I all love you so much just the way you are. We love that silly sense of humor, your kind heart and your wonderful personality. We will always support you in whatever way you need us so always know that you can lean on us. That we will listen to you and your needs.

You will go far in this world no matter what path you take. Be proud of who you are right now and always. I couldn’t be more proud of you!

Happy Birthday Mateo!

Love,
Mom

April is …

April is here. It is the month that my incredible son Mateo was born, and ironically it is also Autism Awareness month. And although Autism Awareness month has had all of the best intentions it has turned many people who have Autism against it. Many people with Autism just want to be accepted for who they are, to be left alone and not be put on display or used for a cause. But we also need to talk about Autism so people are no longer scared of a diagnosis, and services and support continue to be talked about, because Autism is here to stay. But I don’t want to get into the politics of April, but to just share a little more about Autism for our family.

Mateo was due on April 1st, supposed to be an April Fools baby, but the joke was on me and he stayed inside until April 10th. He was stubborn about entering this world, he was facing up instead of down and tangled up in his umbilical cord, but was eventually delivered healthy and happy. The diagnosis of Autism never once entered my mind in this first year and a half of his life. I was aware of Autism, because my cousin was diagnosed with Aspergers at a pretty young age, but I was will admit that I was very naive about what Autism really is.

Mateo was diagnosed at just over 2 years old. We had concerns at around 18 months when he had hardly any words, but did not know the cause. walking out of that Psychologists office, with a diagnosis of Autism was a shock for me, it frightened me because I didn’t know what to expect or what his future held. The words high-functioning, autism, probably a normal IQ, no eye contact, doesn’t share his excitement with you, refuses to point and very little vocabulary the words swimming in my head. That is what Autism was to Mateo, that is why he was diagnosed. Although I knew the life we had would change, little did I know it really changed that day that amazing kid came into my life on April 10th.

A diagnosis of Autism is much more than a bunch of traits. It’s more than delayed speech, little or no eye-contact, spinning in circles, flapping hands. It’s more than just therapy sessions and IEPs. My son sees and processes the world differently. From walking on his toes, to flapping his hands, not making eye-contact each little trait of Autism has a reason and a function.

My son is definitely not a statistic to be feared. He is an incredible boy with an amazing mind. He is loving and kind. People are drawn to him and his almost magical energy he has inside of him.  He has a joy and amazing spirit that touches every therapist, teacher and friend that enters our life. So 7 years ago when he entered my life, I had no idea this incredible boy that would forever change my life. Change my views. Change my purpose. And forever shine a light on Autism for me and my friends and family.

I look forward to the days when he shares many of his thoughts with me, when he talks to me about Autism, when he shares his fears and hopes. When he advocates for himself and tells me what about Autism is important to him. But he really just wants to be himself. He is just like most 7 year old boys. He wants a bike for his birthday. He loves playing video games on the Ipad. He loves super heroes, and teasing his big sister. Yes, he’s a face of Autism. A face that deserves respect and understanding. A face that will grow up and need continued services. Just like those early intervention therapy services that have enabled him to be in a Mainstream Classroom today.

Of course we live Autism in our house every day of the year, but for many who have little contact with Autism, they don’t really think about it. But please spend a little time thinking about Autism and how we all can spread the truth about it. How each of us can show a little love and understanding and embrace individuals of all differences. Next time you see a kid flapping his arms with excitement or a person not wanting to look at you when meeting you for the fist time, you can have a little more understanding. And that little bit of understanding and acceptance will go very far for every person with Autism.

Avoiding the breaking point

I wish I could see inside his mind, and see what he sees, feel what he feels and know what Autism is for Mateo. I wish he could clearly communicate to me when he is anxious or over-stimulated when the world is closing in on him before he reaches that point, the tipping-point that precedes the breaking point.

My husband and I have gotten really good at helping him at the tipping point to rescue him before the breaking point hits. But sometimes it hits. Sometimes a full glass of water will land on his lap at dinner and there is no warning, but we know it’s over. Sometimes he will stumble and fall and the world crashes. And sometimes he will pick himself up, brush himself off and move on without incident. Some days are easy, some days are a very difficult struggle. But we don’t really understand why.

At a family party for my grandmother the other day I spotted him off sitting alone, with my phone, stimming non-stop. And inside I felt so sad. His sister was quietly swinging on the bench swing, smiling away, as he could not stop moving his hands and making vocalizations. I am sad, not because of the differences in his behavior, but the fact that the anxiety of being in a new place is causing with all of my family is causing it. Maya goes up to him and asks him to swing with her. He shakes his head, and goes back to stimming. And my heart sinks, because warning sign one is when Maya can’t rescue him.

So I approach him and talk to him, ask him if he will join me at the table. He asks if he can watch a show, so I put on Netflix and he chooses Blue’s Clues. Mateo would probably never admit to his school age friends that he watches Blues Clues or Mickey Mouse Clubhouse. But I know those shows calm him down and make him feel good. They are his security blankets that bring him back from the breaking point.

So watching the show, his stimming is less frequent and he slowly can process the people he doesn’t see all of the time. And I relax when I see him back to chasing his cousins, not asking to go home and a huge smile returning to his face. He and his cousins are all swinging together laughing joyfully and we made it. No breaking point, no need to leave early. And he is happy. And that is truly all I want in this world for him.

Such adorable cousins!

Treasured Time

I took Monday off to spends some time with the kids. I have been working a lot of hours and it’s been hard on my kids, especially Mateo. Like many people with Autism change is hard for Mateo, and having me out of the house for long periods of time was tough. So we have been trying to pack in lots of family time when I am not at work.

Mom and son time!

Over the weekend we went to the River and hiked around. Mateo’s favorite part of going to the river is hunting for the biggest rock he can carry down to the water’s edge and chuck it in for the biggest “sploosh” he can make. He tried to dig the buried rocks out and chuck them in with all of his might. As we walked the trail there were signs with historic facts about the river, Reuben began reading the signs to Mateo and then we had to stop at each sign and make sure we read it along the way.

Boys of all ages just love to throw rocks!

One amazing sister right here!

The day was beautiful, the animals were out and Mateo and Maya excitedly pointed out 15 deer, one Jack Rabbit (not the Easter Bunny it was decided) a turkey vulture and a turkey which turned out to be a tree stump. I think these trips are his favorite, just his family, the big outdoors and not a lot of people around. He seems so happy on these walks, he basks in the sun, is all smiles and seems very at ease.

With age, I am noticing the anxiety setting in. Crowded spaces cause him to become very introverted, he will instantly ask for my phone to play a game and find a place to sit. There he will be consumed by his game, and able to slowly ease his way into his new setting. His stimming sky rockets, he jumps, he won’t answer me except for short sentences and seems so anxious. He will now ask to go home after being somewhere for over an hour or so, which is also new for us.

I know that it’s hard for him, but I also know that it’s necessary. As long as he has coping mechanisms, I know he will be ok. Eventually he lightens up and begins to enjoy himself, I will take my phone away, and let him slowly absorb his surroundings. But being in places surrounded by people is part of life, he has to find ways to cope and ways to handle the anxiety.

So on my day off I took the kids out for some Frozen Yogurt at their favorite spot. A little time with just the three of us. We laughed and told silly jokes and after finishing their frozen yogurt concoctions Mateo asked if we could go to the book store. So the three of us walked over to Barnes and Noble and searched through the children’s section. Maya instantly chose a new dog book of course and Mateo took his time searching. He finally came to Green Eggs and Ham. He had picked out a baby version, it had a mirror that squeked, and he was a bit confused by it. I asked him, do you want this one or should we look for the bigger version that has the whole book. Oh the big one he said! So we found it and he eagerly brought it home. I asked if he wanted me to read it and he said no not until bed time of course.

Then he sat there before bed and read it. Word by word the whole book, only getting stuck on a couple of words, but when the words were repeated he knew them. He read it with so much excitement, it was amazing and inspiring! And I wanted to bottle up that night and treasure that sweet memory for ever. The way he would yell ‘NO I DO NOT LIKE GREEN EGGS AND HAM! SAM I AM!!’ was the cutest thing I have heard in a very long time.

I remember the days when we would coax every word out of him, where he would fight through tears to tell us what he wanted to drink. And now we have new challenges, and I know I will look back on those challenges and say, look how far you have come Mateo. I will always be so proud of my children and the amazing things they have taught me. I really treasure all of these amazing days, their laughter, their jokes, their stories, Mateo’s laugh, Maya’s growing kindness and the incredible bond they share.

The incredible duo! One would not be the amazing kid they are today without the other!