In 2007 I found that I was pregnant with quadruplets. These are not my first children, as my oldest children from a first marriage, were 13 and 11 at the time I gave birth to my quadruplets. The quadruplets were born 13 weeks premature. Due to their premature birth, we lost one of her babies and the other three survived but had various issues due to their premature birth.
Since I had two older children I knew how children were supposed to develop. I quickly found that these children were not developing in the way I was expecting. I kept going to various doctors and they all just patted me on the head and told me everything would be fine. They said that the children were only delayed because they were born prematurely; however, I knew that was wrong! As a mother, I knew there was more going on than what I was being told! I tried to fight with the doctors and the therapist but I didn’t know what to say or how to say it. I didn’t know the jargon or ways to explain what I was seeing that they were ignoring. In the end, all it did was make me really angry! I started researching. I hold multiple degrees from a university but they are all in science. I never studied medicine. Once I had my children though I began to study more about medicine, and medical jargon, in order to better explain what I saw was going on with my children. This got me started in medical advocacy for my children.
From birth until about three I fought and fought for my children. I fought the doctors and therapists in order to get my children the diagnoses they needed to get more therapy and more help. I fought with my husband and his family as they thought I had Munchhausen by proxy since they did not see the issues I was seeing in the children. I fought the insurance companies who denied the things I needed for my children. It was a never-ending fight. Each day I would wake up, look at my list of things, add the new things I needed to do, and then I started working on my list. It never ended. The parade of people in our lives. Therapists, doctors, specialists, medical supplies, surgeries, and more. Any free moment was spent in medical advocacy or research for my children.
When the children were nearly three and aging out of early intervention I ran into a kind woman at a seminar on how to file for divorce (all of the stress of having the kids were taking a toll on my relationship with my husband; but, we are still married and will be celebrating our 22 anniversary soon) she told me my daughter’s quirky behaviors might be due to autism. What? I had no idea what she was talking about so I looked it up. It made so much sense! Why had not Early Intervention therapists (there were several) nor any of the other doctors or therapists brought this up? Now, I was angry again, this time at Early Intervention.
I was fortunate that the disability law group, in the state I was living in at the time, had just received a grant to pursue cases involving Early Intervention. An attorney was assigned our case and the next thing I knew, like magic, I found out we had won our due process case! I was happy we had won the due process case; however, I did not understand what had happened or why we won. It was in that moment I understood I needed to learn more about special education and special education law.
So I turned my attention from medical advocacy for my children to educational advocacy and I studied everything that could. With my husband being a public school teacher, and the sole supporter of our family, we did not have enough money for me to take paid classes so I took every free class I could find. I quickly found that the free classes did not provide enough information beyond me learning that I had more rights! So I began to research on my own and spent hundreds of hours reading peer-reviewed journal articles along with purchasing college-level textbooks in the fields of special education and neuropsychology. By 2014, I realize I had learned a lot of information that other people probably wanted to know too so I started to help others advocate for their children. In 2016, I founded this group to help parents who are lost and struggling in the special education system. The admins and mods for this group focus on having “one voice” in order to cut through any confusion and provide clarity to parents. In this group, we speak in “one voice” because we focus on the law and guidance.
My children range in age from 29 to 13. My surviving quadruplets are now 13. My daughter, Margaret, suffered HIE. She has issues with aphasia, a hole in her right frontal lobe that causes issues with a lack of impulse control. She also has diffuse white matter brain injury we think caused her expressive/receptive language issues, she has been diagnosed with autism, ADHD, poor working memory, severe dysgraphia, severe dyscalculia, mild dyslexia due to a visual processing issue, and mild cerebral palsy. James was diagnosed with autism and ADHD. He has really impaired fluid reasoning and we see more of that impact now he is a teen. He also has behavior issues and is considered to have Dysthymic Mood Disorder and is treated with medication. Baby C, my daughter Martha, is the quad who passed away the day after she was born, and Baby D, Joseph, is my miracle kid. I was told he was going to die in the womb, then I was told he was going to die at birth and not to bury my daughter yet as he would join her. Then he almost died the day he came home from an undiagnosed case of severe hypotonia and GERD. Then he almost died again when he had a sub-glottal cyst removed that was blocking 80% of his airway. I was told he would be a vegetable. He now walks, talks, and has a lot of interesting thoughts to share! He is considered medically undiagnosable and medically complex. He is 13 and the size of a 7-year-old and weighs 55 pounds. He is blind in one eye due to ROP and may lose vision in his other eye. We watch him closely! He has tracheomalacia, a narrow trachea, hypotonia, dysphasia, aphasia, ataxic cerebral palsy, autism, SUPER slow processing speed pulling his overall IQ into the intellectually impaired range. There is likely more I am forgetting but he is a complex kid! LOL
Where my heart and my passion lies is in teaching others how to be effective advocates for their children. I don’t want people to suffer or feel alone. That is why I formed this nonprofit!
We are here to provide instruction and training to parents who are seeking to effectively advocate for their children. We are here to help you with private advocacy services, if you need it because we realize sometimes parents end up in difficult situations. I specialize in doing phone consults for parents to help them prepare for meetings or to give them advice. I also specialize in the interpretation of psychometric testing done by the school (or elsewhere) and I look for hidden disabilities along with reasons to ask for an IEE. Jackie, Arie, and I are non-attorney parent advocates. I am so excited they have recently also joined the board of PASEN.