Transcript:

I grew up in the East Coast with really good parents. A brother. A sister. A pretty cohesive family unit. I was shy and quiet and although I don’t remember much about high school I do remember that I had dreams of becoming an accountant. I loved numbers. I loved how working with numbers helped people build businesses, gain financial freedom and helped people save up for all the important things their family would need or want. Perhaps I loved numbers because financial freedom was the only thing my family lacked. After two years of college following my accountant dream I had to quit because we just didn’t have the money. My dad’s heart issues were affecting his quality of life and his work days and well, I would have to find another way.

So, I got a job doing the closest thing to accounting I could think of. I worked for the same bank for 20 years and I progressed up the corporate ladder quickly and consistently.

I had a lot of relationships during those 20 years but nothing seemed to really stick. There were some with commitment issues. Some that were just immature. Some lacked vision and goals. I don’t know, nothing terribly traumatizing happened during that time but no one really came close to being someone that I wanted to spend my life with.

I finally met my husband in my late 30s. We dated for about four years until we got married in my early 40s. When I met him, he was fully immersed in a medical school residency which was quickly followed by a fellowship. I knew this would mean that as a couple, and when considering a family, I would have to be willing to move… a lot.

So there I was in my early 40s ready to have a baby. This meant ensuring my body was healthy enough and this quickly and surprisingly led to five surgeries for uterine fibroids. Luckily, even though it took quite a while to get pregnant, we were able to conceive without intervention.

I remember being on the table with that blue gel all over my belly as the sonogram technician happily swirled the wand and said, “OK well they both look really good!”

Both?

Yeah. Twins.

Needless to say, I spent most of my second trimester on the couch with complications because, well, twins. If you know, you know.  

Because of our age and the fact that my husband is a healthcare professional, we decided to do an amniocentesis. Regardless of the results we would love and treasure these babies but because we were older and genetic abnormalities were a higher probability for us and they were twins, we just wanted to be prepared.

The results showed no genetic abnormalities and the genders. A boy and a girl. Wow. I would have a son and a daughter all in the same day. It was not lost on me what a tremendous blessing that was and how many mommas would dream of this coupled bundle.

They were born six weeks early. Those days were a blur of pumping at home and then having my mother in law drive me to two different hospitals daily to visit both of my babies who were separated because of their unique needs.

My little girl came home first and she was a dream. I fell in love with her so fast but I longed to have my son join us.

My little son was having tremendous issues with eating. He was losing weight and not gaining, not thriving. Eventually he did come home but we visited many pediatricians and hospitals often as he continued to not gain and have issues feeding. After several medication failures we found a medication that worked for him and it changed everything.

He was a great kid, they both were such cute, good kids. When you have twins it’s almost impossible to not compare them. My son crawled before his sister and walked before his sister. He giggled and laughed and was so interactive all well before his sister but the only difference was that as they approached 2 years old, he wasn’t talking. His sister was a little chatterbox which made her brother’s silence even more deafening.  

The pediatrician kept telling me that he would talk when he was ready to talk but I wasn’t so sure. As they turned three I took action myself and reached out to a local early intervention agency.

After their evaluation, we were able to get some home speech therapy approved but it was during these speech therapy sessions that BIG sensory aversions made their way to the forefront.

Common things. Playdough, shaving cream, cotton balls. He was just repulsed. I don’t know if it was the smell the texture the sight. He could not stand them anywhere near him.

I was concerned because I knew that typically these were all things that kids LOVED so for my son to be “disgusted”, I mean geez.

But other things stood out too like his above average intelligence in certain areas. This kid at just 3 years old could do a pretty complicated puzzle in seconds. It’s like his brain could visualize where each piece went before they were placed. Fascinating.

After many sessions and testing the speech pathologist diagnosed him with apraxia and motor planning issues. It’s like he knew what he wanted to say and he had full comprehension of what you were telling him but he just could not formulate the words.

We carry a lot of sad stories about the PreK years as most of our experiences involved teachers that would say unkind things. They just didn’t seem to understand that my son was just different and couldn’t really control the way his brain was working.

It was in a private pre-K school setting in the same classroom as his sister that we started seeing all of the behavior problems. My son was withdrawn. He was alone most of the time. He would throw tantrums.

I remember one time the teacher telling me, “I wish he could act like everyone else” and that was so interesting to me because she was so kind and she really a great teacher and she said that with a sadness in her voice, like I just wish he could act normal because he has so much potential. You know? But I know she didn’t mean it with ill intention, but man it hurt. I knew the world would agree with her. It would just be so much EASIER for him to comply. Yeah. But what if he can’t? Is he not worth educating? Is he not worth the time and attention and unique strategies?

Speech therapy continued as we worked on apraxia and motor planning. It was clear that he was avoiding hard tasks and knew how to manipulate the situation to get out of it.  

Then, in kindergarten, after a lengthy evaluation, the public school labeled him with autism.

I was not shocked by this diagnosis but I remember feeling really sad. Not sad for myself but sad for him. I kept thinking how hard it must be for him. How hard it must be to know what you want to say and you can’t say it. How hard it must be to know what you want to do and you can’t get your body to do it.

My husband and I experienced our own sadness as we seemed to miss and long for the conversations we thought we would have. The experiences we thought we would have. 

I think the sadness was just so pervasive because my daughter was doing so great. She was so wonderful and smart and interactive and she could talk to us and it was rewarding and we just, we wanted the same for my son.

Right after the label was given, he was placed in a Life Skills classroom and at that time there were many students with severe disabilities.

It was obvious that my son didn’t belong in that classroom because he didn’t need the level of physical support that the other children needed, but he could not tolerate the regular classroom without disruptions so … WHERE DOES HE BELONG?

About a year later my husband had an opportunity to relocate near a beach and this momma gave him a wholehearted YES!

We went to register the twins at the local elementary school and I was told my son would not be able to attend.  This particular school didn’t have a Life Skills class so I had to do a lot of convincing for them to allow him into their regular classes for inclusion. After reviewing his file, the special education teacher literally told me, “I can’t support him.”

But I knew they were wrong. I knew what he could do. I had seen him. I knew how smart he was. I begged them to just give him a chance to adjust. He was in a new town, a new home, a new school and I knew that testing him would be difficult. But I believed even more in his potential.

It took about one year for the teachers to realize that he did belonged there.  

It is so frustrating and sad to think that school and the whole educational experience for families like ours is such a gamble, a tossup. You know?  It’s like every year we roll the dice. In first grade, the teacher was OK but not very communicative so when failing grades came home on his report card, that was the first I heard or knew he was failing.

In second grade he got an angel of a teacher.  A teacher, a person that I know will be close to us for the rest of our lives.

It seems like some teachers inherently understand that this whole thing is not about worksheets or grades or testing. It is about people. This is not about teaching kids, it’s about loving people.

Third grade brought to us another wonderful teacher with a background in special education. She was so attentive and patient but then came fourth grade.

The roll of the fourth grade teacher dice resulted in a teacher who told me, “I have no experience and I don’t know what to do when it comes to autism or special needs.”

Every time my son had a meltdown in that class because he was frustrated with the content coming so quick, the other kids would get scared. For me as a parent, I think it’s so simple to teach. It’s so simple to educate these kids that he has a unique brain that works differently. Kids are smart and attentive. If the teacher was patient and willing and accepting, they would follow.  

Fifth grade we got another wonderful teacher with special education background. This was also the year that my son came home one tough day and told me, “Mom, I can’t turn my imagination off.”

Pretty quickly after that epiphany we tried an ADHD medication to see if it would help him and although it did help him focus he still needed help staying on track.  It’s like he needed someone sitting next to him just to keep his focus in line for that worksheet, for that particular assignment while he was in the regular education classroom. Now I know that parents don’t get shadows for their kids, even the most severe kids don’t get shadows and that’s really what he needed. I know it’s money and I know it’s expensive but all in all I get so frustrated with this because if that’s what a student needs to succeed, and what a teacher needs to be successful, isn’t the money more than justified?

Well, the next thing I know the principal of this school placed a shadow with my son.  I don’t know if the principal had a Special Education background but she did have common sense and a heart of compassion and so all of a sudden, one day, there was an educator sitting next to my son. I suspect a request was not placed to the Special Education department because it would have been ignored and denied. This principal did what was necessary for my son and it changed everything for the better.

Regardless, every single year I had to help. Every year I had to be an active participant. I had to be actively involved with the teacher and I had to be aware of what was going on every day. I expect that this will be needed year after year.

I feel like the greatest fear I have for my son is that my greatest dream for his life will not come true. Although he’ll have a place in my home for the rest of his life, I don’t want him to feel stuck with me if he doesn’t want to be. He is brilliant and I want him to have a job but my biggest fear is that independence won’t come for him not because autism will limit him, but because the world will limit him. Employers will limit him the same way the school system has limited him.

My biggest regret is that I should have pushed for earlier intervention. I can’t help but go back and think what would’ve happened if we had all the therapies in place at two years old? Behavior therapy and speech and occupational therapy have all been so instrumental but maybe if it was just sooner.

But I believe that we find things and people when we’re supposed to.

The biggest lesson I have learned is to never let someone tell you that your child can’t do something. Don’t let anybody put them on a lower peg.

Too many times parents are terrified for the schools to label their child with ANYTHING because they know that for some schools and some teachers, a label or diagnosis encourages them to wipe their hands clean and free themselves of any responsibility to educate that child. They feel that because the child has a special need, their only role is to keep problem behaviors at bay regardless if they are learning or not.

No. We want these schools and teachers to get a diagnosis and a label for a child and feel empowered and passionate about helping them learn at the same time building up the students around them to make them more aware, kind, and patient. When special education students and general education students are provided the optimum environment to learn and grow TOGETHER, we all win.

Only together, we all win.