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!
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?
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!