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©2018 BY SUCCEEDING WITH PASSION

Preserve Your Child's Potential: 5 Steps to Advocate for Your Child with Special Needs

September 8, 2018

 

 

My daughter Maya is loving, outgoing, and a born performer. She is the star of my Facebook feed. She says the most outlandish things which leaves my husband and I in stitches. She draws attention everywhere we go. People just love to be around Maya. Her energy, her joy, and her unencumbered love of life shines through her like a beacon. 

 

Maya has always been an active child. She, fully walked at eight months-old, understood and spoke both English and Spanish at 15 months, and taught herself how to do a cartwheel at three years. She is in constant motion. We often say that she has two speeds: run and sleep. 

 

She challenges us as parents every…single…day. We waver between amusement, joy, and utter desperation. Maya keeps us on our toes with insightful questions and a no-nonsense approach to life. Everything with Maya is a negotiation. She needs to know the “why” behind every decision she doesn’t understand.This determination and inquisitiveness will serve her well in life. However, there is another side to parenting her that is not so pleasant and has left me shaking with desperate tears, worrying about her future.

 

When Maya was 18 months-old, she had a petite mal seizure. After that incident, we noticed that her activity level (which was always elevated) reached new heights. She became increasingly aggressive. She would hit her sister and her nanny. She had problems focusing and sitting still. Many people told us that this was just a normal development phase from infant to toddler, but Russell and I had our doubts.

 

We placed Maya in preschool when she turned two. We noticed quickly that her behavior was out of bounds. She was extremely aggressive towards her teachers when she did not get her way. She often required interventions from the preschool director. Any time an adult tried to assert any kind of authority over Maya, she became increasingly defiant and violent. Nap time was exceptionally stressful. She flat out refused to take a nap. She would run around the room, throwing books, and hitting her teacher. Over the next few months, the school was extremely patient. However, after about 10 months, they asked us to remove Maya.

 

Russell and I knew that this was not normal behavior. Maya was now approaching three years-old. We felt strongly that with early intervention, we could get her behavior under control and help her manage her impulses. With dogged determination, we made an appointment with our pediatrician to get help.

 

 

What Do You Mean We Have to Wait?

 

There is nothing more frustrating for parents than the healthcare system. When we took Maya to our pediatrician with the HMO, the doctor informed us that there was nothing wrong with Maya. She also informed us that our HMO would not diagnose a child until they were six-years-old. I was dumbfounded. They wanted us to wait until after Maya had entered elementary school to have her evaluated. 

 

The medical community is well-built for children who have special needs that are presented clearly. However, if you have a child that appears to be “normal”, they tend to put assessment and treatment off until the child is older. I completely understand the reason for this process. There are many things that present in childhood that kids outgrow. For us, we knew that Maya’s issues required immediate attention or she would be dealing with the negative ramifications for years to come.

 

And of course, treating children early costs money.

 

We felt that we had to get Maya help before elementary school. This means we had a short window to get her help. We embarked on what would become an eighteen-month odyssey of despair, anger, and ultimately success. 

 

 

Step 1:  Get a Diagnosis 

 

After being turned away by our pediatrician, I reached out to as many people as I could for help. My boss referred me to a pediatric neurosurgeon in San Diego who would help us diagnose the issues with Maya. Although this was a large expense for us, we felt that we had a duty to our daughter to do whatever we could for an early intervention. We made the appointment and were on our way to San Diego three weeks later. Once we paid the hefty consultation fee, we were ushered in to the waiting room.

 

This doctor and her nurse did a full battery of tests on Maya. They observed, did interactive tests, and had her complete blood tests. They did a full evaluation on Maya and us. At the end of the long day, we had a diagnosis. Maya had ADHD, Sensory Integration issues, and slight OCD. We cried with relief. We at last knew what we were dealing with and could move forward with treatment. 

 

Problem-solved!

 

Not so fast.

 

We now needed to find the resources to help our daughter. We had no idea that the diagnosis was the easy part. It would take us another full year to fight the system to get Maya help she needed.

 

Step 2:  Stand Up for Your Child

 

Armed with the diagnosis from the neurosurgeon, we then headed back to our HMO. They had to listen to us now. When we presented our pediatrician with the paperwork, she referred us to the autism clinic for a full day of further testing. Here’s the thing I have learned about an HMO – if they turn you away, go outside and get a second opinion. Every time I have done this and returned to my HMO, they do what I need them to do.

 

In Maya’s case, they put her through a full battery of tests and came up with the same diagnosis from the neurosurgeon with an added diagnosis of anxiety disorder. Great, we thought, let’s get her into some behavioral therapy and teach her new skills. We were naïve. The first thing they threw at us was medication.

 

The doctor walked into the room. He was an older doctor with a distinguished air about him. He smiled at us with kind eyes and went through the results of the tests. As he finished his presentation, he started in on his recommendation. He would prescribe Maya a low dosage of Prozac to help with her anxiety and go from there. He also referred us to a therapist.

 

We sat there in complete shock. Where was the referral for behavioral therapy? Where were the classes to support parenting a child with special needs? Why would we put a three-year-old on Prozac? We started to push back immediately. We explained to him that medication was a last resort. We wanted to start with tools to help Maya self-regulate and modify her behavior. 

 

His kind eyes turned hard and he referred us to occupational therapy and behavioral health department. If we didn’t want to medicate her, there was nothing he could do for us. 

 

We were beaten – but not defeated.

 

Russell and I decided to go to the behavioral health appointment believing that the counselor there would help us navigate how to parent a child with special needs.

 

We were so wrong.

 

This “counselor” began by telling us that Maya, because of her birth parents, would probably grow up to be an addict and thief. I sat there in shock as she described to be the progression Maya’s life would take. This woman said “she will be aggressive to others and you. When she gets to Junior High, she’ll start experimenting with drugs and steal from your purse.” She then began to tell us how high the divorce rates were for parents of children like Maya. By the end of the appointment, according to this woman, Russell and I would be divorced parents of a criminal.

 

I was horrified.

 

The only thing that saved me from going “the hell off” was that we mistakenly brought Maya to the appointment. We thought that the appointment was for her. We took turns sitting out in the waiting room and playing with her while the so-called counselor bombarded us with dire predictions for Maya’s life.

 

When the session was over, I grabbed Maya into a desperate hug. I silently rebuked the counselor and prayed joy into my child. I promised her that I would do everything I could to make sure she had a beautiful life. Russell and I grabbed hands and walked for the door. As we walking to the parking lot, a gentleman met us at the side door. The words he spoke gave me hope. He said “that little girl is lucky to have parents like you. I observed your interactions with her in the waiting room and it was beautiful. She’s going to be a great person.”

 

That was the lift we needed. We resolved to get Maya help.

 

Step 3: Find Your Tribe

 

Six months, a new school, and numerous occupational therapy appointments later, Maya was not doing well. I was missing work to sit in on her preschool class. Russell, thankfully retired, was on-call to the school to help with meltdowns. The preschool director at this center refused to give up on Maya. Together, we worked tirelessly to help Maya navigate the world. 

 

During this time, the Regional Center failed to call us back. We went up to the office to try to get help in person, only to be met by a security guard blocking access to the building. We wrote letters, we called, we attended classes. We worked tirelessly but were in no better shape to get Maya the support she needed. We found out soon after that Maya did not qualify for Regional Center help because she was three years-old. At this point, we would have to work with the school district.

 

We had never interacted with our public-school district. Our older daughter attends a small private Christian school. Thankfully, the principal of Erin’s school gave us the information we needed to get help from our local school district. She connected us with the Special Education coordinator. We filled out the paperwork and within two months, Maya was enrolled in the preschool program. The best part about this program was that it was a “regular” preschool program. It was difficult to secure a spot. However, because of Maya’s assessment and determination that she met the criteria for special needs, she was enrolled.

 

Things were starting to come together for Maya. She was now in a school environment that was designed to help her. Russell and I were also getting the right counseling and direction from a psychologist who my gift-mother knew. This psychologist was a Godsend.

 

She helped give us the tools that we needed to parent Maya better. We were not parenting Maya well. There was a lot of yelling in our home. We would often focus on the negative aspects of Maya’s behavior. We were all under stress. After meeting with this amazing woman, we learned how to parent Maya through positive reinforcement and patience. Under her guidance, we changed some aspects of Maya’s diet, eliminating milk and other dairy. Slowly but surely, Maya’s behavior began to turnaround as she responded to OUR CHANGE in parenting her.

 

Lastly, I surrounded myself with women who knew my struggle. Unbeknownst to me, my gym clique was filled with women who had the same issues as me. They had children with ADHD. They helped me understand the need for increased activity and positive guidance. I listened to all of them and they were my salvation when I needed it. A couple of them even suggested that I give Maya a shot of coffee to help round out her ADHD. We tried it and it made a huge difference. 

 

Which brings me to my last piece of advice…

 

Step 4:  Be Flexible

 

Maya is now on medication. After a year of indecision, 5 ml coffee shots, diet modifications, and parenting adjustments, she needs it. Maya was doing a great job with modifying her behavior and aggression. However, as we progressed through the year, we realized she needed medication. She continued to struggle with impulse control. We understood that for Maya to have a successful school career and the best chance at a successful life, we needed to reevaluate our stance on medication. She needed more support.

 

We revisited the doctor at our HMO and told him that we were now ready for a pharmaceutical intervention. We rejected the Prozac outright. That was not something that I was prepared to put into her system. He prescribed the lowest dosage of an Adderall like medication. It was a game changer. 

 

Everything came together. 

 

Maya is thriving. 

 

We are better parents.

 

Step 5: Find Your Joy

 

We went to Maui, HI this year for a family vacation. We walked through the hotel. Maya cartwheeled through the hotel. Her absolute joy for life beamed through her little body. Everywhere we went, people smiled at her, babies wanted to play with her, and she brought happiness.

 

When she woke up in the morning, she would remind me that she had homework to complete. She would sit quietly and finish her work. Once she finished, she put on her swimsuit and proclaimed that the beach was waiting for her.

 

As I watched her frolic in the ocean with her big sister, delighting in the waves knocking her into the sand, I felt pure joy and relief.

 

She was going to be ok.

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