Autism Archives

Vacations and The A word

July 23, 2015ALLLeave a Comment

It can be difficult to talk about.

Difficult to think about.

Difficult to plan for.

We love going on vacation.

All of us love being on vacation.

We love the fun.

We love the excitement.

We love everything except how Autism affects vacations.

Being cool with daddy on vacation 2014

I think there was a while that we went into vacations somewhat blindly.
Hopeful.
Not to say that we are hopeful now, but it’s different.
It’s more of a planned hope.
A very intentional hope with a plan.
We have left the amusement parks late at night after being overstimulated all day, screaming and crying and just not being able to stop.
Those are not the memories we want our children to hold onto and take with them.
And, honestly and thankfully they don’t seem to be the ones that stick.
But, if we can avoid that from happening at all, then we want to.

So, how do we attempt to do that?

Our answer: Don’t go it alone.
Never feel as though you are the only one who is in this or trying to make it better. If you don’t feel like you have a partner or a team, hopefully you have resources. Professionals, social workers, psychologists, friends and family that can help your child and you to have the tools you need to succeed. For us this is been really helpful and helped us to set out on a plan before we go on vacation. For our next trip away, we have a list of expected behaviors and responses. We have also talked a lot about small reactions going with small problems. One of our biggest issues is big reactions to small problems or something that doesn’t seem to really be a problem at all. Transitions are also really tough and vacations are typically full of them. We also have a “family plan” so we can think about and talk about all of our roles before we start something. For example, if we are going to a Hotel for the first time, we can talk about what we will each need to do in order to get checked in and settled in our room. It’s actually a pretty fun game and all of the other kids get into it too.

Next: Don’t sweat the small stuff.
You know when it’s too much for your child. You know your child. You know when they are overstimulated and need a break. You know when you need to address something right then or when you should just let it go, because it’s really not a big deal. You know. So, trust your instincts and don’t worry about what other people think. If that is what is driving you during a meltdown, then it will never end well. We have to learn to separate our child’s behavior or misbehavior from our own self worth and frankly, that can be really challenging in a public place.

Finally: Choose activities you are confident your child will succeed at doing and do those activities.
It’s his vacation too. And, him being filled with joy riding his favorite ride brings him joy and that brings joy to the whole family. You don’t have to plan your entire family vacation around one person, but it’s nice to think of things that each family member will love to do and to try to make that happen on a big trip. It makes each of us feel special to know that we are valued and that are interests are taken in to account when our parents make plans for the family. I certainly choose activities that I want to do. It’s my vacation too. 🙂

Don’t give up. If you do encounter a meltdown of epic proportions during a vacation, ride the storm and pray it passes quickly. They usually do and with my guy, he seems to block that stuff out and really focuses on all the wonders and excitement of the day. We are blessed.

brothers on vacation, summer 2014

We Made It…thankful for a new school year!

September 6, 2014ALLLeave a Comment

Last year was tough. Really, really tough. Our oldest son, who is on the Autism Spectrum, changed schools to be with two of our other children. It was a change to make things easier and smoother for the whole family. But, as you probably know, change can be very difficult for a person with autism. Honestly, change can be difficult for anyone. But, change is difficult for him and it was difficult.

A new school. In third grade. In a team with three main-subject teachers in three different classrooms. All new (to Bakri) ancillary teachers. And, new kids (to Bakri) who have pretty solid friendships by third grade. That was the hardest part. Bakri had friends at his old school. We loved his old school. We loved the teachers he had. He had great ones. Really great ones. It turns out that the kids and the relationships your children have with them- that’s almost, if not more important than the teachers. I’m speaking, of course, about schools that we’ve gone to, where the teachers are, for the most part- top quality and the best of the best. So, when that is the case, the kids in the classroom and having friendships is the most important part of the school day.

That was a struggle for Bakri last year. There were some super nice kids in his class. I think some of them really like(d) Bakri. But, when the bullying happened, the nice kids either didn’t see it or hear it, or they were afraid to stand up to the bully(ies). It’s tough. We are trying to teach our other children how to stand up for kids like Bakri. And, it is a tough line. When do they speak out to the bully and when do they tell the teacher? Or, do they always do both?

After our crazy summer of fun and complete chaotic-24-hours-a-day togetherness, we (especially me!) were looking forward to school beginning.

Some of us woke up extra early and willingly let our Momma fix our hair with a hairbow (that NEVER HAPPENS!) and even had time to cuddle on the couch, fully dressed with a robe on. That’s miss Kindergarten, Trinity.

Some of us were pretty tired at breakfast. Leeland on his way to Pre-K 4!

We enjoyed picture time outside. The oldest two, Maddux and Bakri were all smiles. Excited for 2nd and 4th grade.

How do we get all four to stand and smile at the same time? Who knows!? When it happens, it’s a small miracle.

And, then Leeland woke up! Ready to go!

Leeland and his chauffeur!

Big boy at a big school!

I took the other three kids to school to begin kindergarten, second and fourth grades. The first morning was the easiest of the week.

The rest of the week flew by and it was chaotic and exhausting. Mornings were tough. I’m pretty laid back in the summer. So, being at school at 7:30 on school days presents its challenges. Trinity already knew her teacher and seems to be adjusting well and enjoying kindergarten. Maddux has made a couple of new friends and knows most of his classmates. He has great teachers as well. Bakri had an easier transition this year. We met with his team of teachers- just two this year- the week before school began. I think that helped us to set some expectations. They also assured me that this would be an easier year for him in establishing friendships, now that he is in his second year at the school. We sure hope so. Leeland is in a montessori school and has the same lead teacher as last year. He loves her and she loves him.

So, we’re in it. 2014-2015 school year. Ready to learn, love, and grow. I’m scared and excited and hopeful. How did your first week of school go?

Hope it was great.

love,

El Momma

Preparing for School

August 20, 2014ALLLeave a Comment

We’ve enjoyed summer and are in the crazy last days of complete insanity. I am moving from room to room cleaning up legos, beads, making beds, putting away clothes to turn around and it’s like the opposite of Mary Poppins. Everything I just put away magically ends up on the floor in worse condition than before. I’m in la la land. Help! If you are wondering why I don’t have my children do these chores- the answer is “I do.” And, we are still in some crazy place of stuff every where. I am really really looking forward to the normal life of kids in school. It means I will actually clean something and my little els won’t destroy it (at least until they get home) and they will probably have so much homework and be so exhausted that they will only have enough energy to eat and go to bed for the first week. A girl can dream.

To prepare for this year’s intense workload in 4th grade, we met with Bakri’s teachers yesterday. It was amazing and hopeful and wonderful. We are really excited about this year for him and praying every single day that he will make a close friend at school. In having conversation with his teachers they wanted to learn more about him. His interests, likes, learning style, etc. He sang part of a song and we told them how much he loves playing the piano, writing music and about a project he did in second grade. His project was to tell about his family in any creative way that he wanted to. He wrote a song and we recorded it and recorded a music video to go along with it. It is called “Our Family Song.” We watched it a few times yesterday. The Els commented that there are a few things that are incorrect in the song, like when it says “we don’t fight in our family!” Um, ok, people, these are goals and hopes. It also has very accurate things like “we run around in our family!” So there!

So, in honor of school starting, here is Our Family Song by Bakri El-Hakam, written at age 7.

Thank you

May 25, 2014ALL4 Comments

On Wednesday, I was feeling frustrated. Sad. Alone. I went to the computer and opened my blog to write. When I looked at the drafts page, there was one that I had never published entitled “Admitting the Truth.” I opened it. Read it. Wrote a quick intro and hit publish. I walked away and went back to my normal night routine.

The next day, the battle I was in continued. There I was again asking someone to stand up for my son. Asking someone to do what is right. Asking for compassion. I was having to battle for these things. Believe me, I do not want to constantly be in a battle. Thankfully, I’m not. I choose them for the most part and sometimes the battle chooses me. This particular battle chose me. I won’t go into the details of this one. But, I will say, compassion won. Thank God.

Later Thursday, I was spent and preparing for a special rehearsal with our contemporary worship band and our traditional Bell choir- Bel Canto. That night we had an amazing rehearsal preparing beautiful arrangements of contemporary worship music. I loved every second and it was very therapeutic for me after the day I had. By Friday I checked back in with my blog post from Wednesday. I was overwhelmed by the responses. I’ve received so many encouraging comments, emails, texts and messages and Moustapha and I just want to say “thank you” to each and every one of you.

Being honest is an important step in life. For us, we’re honest about this because we’re in this together and we need the love and support of others to make it work. And, we’re not ashamed. All of us have ‘stuff’ we deal with. Some of it privately, and some of it can be more public if it helps others. We feel like this is one of those areas where, if we’re honest about our experience, it may help others who are just beginning to question whether or not their child is on the spectrum.

I will share more stories about how Bakri was diagnosed, how we came to accept it and how amazing he is doing now in the near future. But, for today we want to simply say THANK YOU!

Admitting the truth

May 21, 2014ALL1 Comment

At the end of the summer in 2012, I wrote this post. I never finished it. I never shared it. I don’t think I had the courage or the strength. But, now, I’m ready. Our school knows. Many of our friends know. Our family knows. Now, I’ll share it with you:
ADMITTING THE TRUTH by El Momma
August, 2012.
We’ve continued our Summer theme weeks. Since we left off, we had Tradition and History week (the week of July 4th), Vacation Bible School week, and Family Vacation week.
The last two were the hardest. You see, no matter how hard we try not to admit it, we have a child on the autism spectrum.
Anytime we break in the routine or do something new, it takes him a while to adjust. Usually after a week he’s fine, but activities like VBS that only last for a week or family vacations that last for less than a week are really difficult on him.
Yes, him. We have three boys and one daughter. Autism is found in 1 in every 62 children in the US and is more likely in boys. 1 in 42 boys are diagnosed with an Autism Spectrum Disorder. ASD.
We’re in that statistic. Hard to believe. And, hard to admit.
We don’t want any of our children labeled, especially negatively. We want them to grow. Be the best they can be. Have a bright future. Be themselves.
Autism is a scary diagnosis for a parent, not because it is the worst, but because there are so many unknowns. In our case, it was mostly a shock. I grew up around people with special needs. My sister has downs syndrome and she had people who were labeled “autistic” in her classes. They didn’t speak. They rocked constantly. There was no way to accurately measure their intelligence.
This is not our son. When he was little he communicated well. He never rocked. He looked perfectly normal. He was intelligent. But, slowly we began to notice that things weren’t ok.
He had difficulty adjusting to new situations. He cried uncontrollably when being forced to leave a park. We could not console him for hours. He resisted making eye contact. He would get “stuck.” He became obsessed with topics.
He loves vacations and he loves his family.
So, off we went to a resort in Texas last week. As much as we knew we would be blessed, we prepared that we may have tough times. It’s hard. Our son doesn’t look any different. But, he is. We get the “looks,” even when It’s not that bad. At one point he kept jumping in the pool yelling “Canonball” and jumping straight in. No Canonball. This was the last day after he had mostly adjusted. He was happy. It was a kidfriendly place. But, still, we got looks from others around the pool. Maybe they found his happiness annoying or they thought his parents were too lacking in discipline.
On the last day, I noticed another family with a special needs. Nobody seemed to look at them. A child who is more obviously special needs.When people know your situation, or at least think they know your situation, they tend to be more understanding.
We left and headed home. He cried. And cried. And, said he didn’t want to go home. Adjusting. It’s hard. I cried too.
He’s getting older. Who do we tell? Should we have him labeled at school to get him extra help? Or, will that hold.him back and change who he can be? How can we help him? Is it enough to love him unconditionally?

The Kickball Game Experiment

April 26, 2014ALL2 Comments

Yesterday was a big day for us. Our oldest child is on the spectrum. The Autism Spectrum. He’s somewhat reserved most of the time, quiet, emotional and very sweet. He changed schools at the start of this year so we could have 3 children at one school and so that I could help him more and be more invested in the school. Changing schools in 3rd grade would be challenging for most kids and for our child, it is especially challenging. He doesn’t seem to cause many problems in social settings. He is just an easy target at times. If another child makes fun of him, he may not notice. He processes things a little more slowly and carefully and therefore other children may perceive this as he’s not as smart as them or doesn’t know what is going on. It’s not true. But, these are real challenges that we face. And, we face them as a family.

He loves kickball. They play it at recess and he especially loves his chance to be team captain. So, earlier in the year, I had the idea to sponsor a 3rd grade kickball game. I proposed this idea to the committee working on donations for an upcoming school event and there was nothing like this booked at the time for 3rd grade. So, I began working the details out with the school. We set a date- after STARR testing which took place earlier this week and we coordinated with the Little League who uses the fields later in the day.
Everything was set. As the date approached, we even recruited a few more players. Settling at 14 total. Which is $280 for the school. Yay!

We planned snacks, drinks, chick-fil-A and ice cream. My dear husband even designed tshirts for the event. The design was printed in all navy blue. They turned out so great. We found a local Houston artist, Randy at Donkey Paw designs who did all the screen printing for us. He is amazing and the turnaround was super fast.

The challenge: there was some kind of miscommunication in planning another event- social- fundraiser for the same grade at the same time. I don’t know how it happened. We received our date confirmation on February 7. But, somehow, 2 events were scheduled on the same day and this other game was sponsored by teachers. One of which is a teacher of my son. So, the classmates, the ones that we really want our child to have better relationships with, to socialize with, to be true friends with, guess where they wanted to be? They wanted to be at the kickball game across the field with their teacher. It makes sense. Their teacher is fun and she actually plays kickball with them during recess. And, they know her and love her. Why would they want to go with a couple of awesome parents who they don’t really know? So, I’m upset. I donated a lot of time and money for the school and this double-scheduling error has been extremely upsetting.

My sweet boy just looked over my shoulder. I quickly scrolled down to show him the picture of him and his dad. He smiled and then he said. “I just don’t understand why they had another game with players that were supposed to be on our team. We need another kickball game.” I’m not sure what can be done about it now. It was unfortunate and unfair. But, it happened. Maybe we can help to make sure nothing like this happens to another family in the future. It certainly doesn’t leave you wanting to work so hard on an event to support the school. However, I won’t give up and I won’t give in. I’ll keep fighting to give my child and other children really great, enriching experiences, even with unexpected challenges.

We still had a great time. My husband was the umpire and coach and our first grader played the entire time. He loved it too!

Our five year old even joined in the fun. The kids looked so great playing in their “team” jerseys!

What matters most is the smile on his face. His dad and I are so proud of him. He loved the kickball game and calls it a “practice game for the next one.” I don’t know when the next one is, but I hope he’ll be there with a smile!