When Jude was born, we were overcome with how insanely and intensely in love we were with this little tiny boy. I’ve never experienced love as quickly and unconditionally as the day that I met my son. My entire life leading to that moment no longer seemed to exist. We thought incessantly of how to protect and ideally care for him.
He arrived about 12 days late. After 48 hours+ of failed induction, I had emergency Cesarian surgery. He was difficult to extract, even during c-section, the Doctors and Nurses had to vacuum him out and remove his umbilical chord that was wrapped around his neck (twice). It was a very scary experience. All that we wanted during pregnancy was for his arrival to be safe and secure. Once he was delivered and doing well, we hoped his challenges were over.
Despite my may attempts and meetings with Lactation Consultants, Jude wasn’t able to breastfeed. He wasn’t tongue tied and we really couldn’t figure out why he was struggling so much to nurse. People offered their attempted helpful advice and assured me that breast was best, the most natural experience in the world. I was confused and saddened that I couldn’t preform these womanly rites of passage, natural childbirth or breastfeeding.
Despite these early challenges, Jude hit his first year milestones pretty much right on. We celebrated his first year of life and started to make plans to have another child. A little over one month after his 1st Birthday, I discovered that I was pregnant again, just as we had hoped. At this time people would comment how close he seemed to be to walking and that surely it would be any day now. Yet, Jude didn’t start walking until about 15 months. This is considered borderline of delay (depending who you ask). We also started to notice that his friends were beginning to say words/phrases and hit other milestones that Jude hadn’t gotten the hang of yet. I expressed my concern from time to time and people would reassure me, “Oh, he’s perfect, he’s just a boy!”
We continue to believe that ‘he was just a boy’ until he turned about 1.5 when started to notice that Jude was becoming increasingly frustrated with his inability to communicate his wants and needs. The older he got, the more specific and complicated his needs became, yet his communication was not developing.
I was about six months pregnant when Jude began having tantrums. Excessive tantrums to the point that we became concerned for his physical well-being. We couldn’t even go to Target or Walmart without a complete meltdown and condemning looks from observers. People told me he was hitting his terrible twos early and I tried to convince myself that they were right. That this too was “normal”.
We continued justifying these behaviors for a few more months, until it became increasingly obvious to us that what we were experiencing was not typical. Jude’s tantrums would last 45 minutes to an hour (sometimes longer) and he became so frustrated that he actually began to injure himself. We started to worry about him hurting himself and doing permanent damage to his body. He exhibited other strange behaviors such as eating books, needing relentless physical activity and lacking interest in communication or his peers.
My husband Michael and I struggled deeply as we did our best daily to help Jude every single way that we could. We tried so many different avenues of helping him…. that just didn’t seem to help. We were all becoming increasingly frustrated, saddened and desperate. We were terrified that things would never improve. My pregnancy with Ruby was progressing in time and our season with only one child was passing quickly.
One day, my husband was at work when he received a frantic phone call from me. Jude had been throwing a tantrum for over an hour and I was actually afraid for my own well-being. I don’t know how to explain how a woman who is 25 years old, at my height and weight, can be afraid of a 30lb toddler? But that’s how I felt in that moment and it was the scariest, most out-of-control feeling that I’ve ever experienced as a parent. Jude was banging his head against the wall and hurting himself. No matter what I would try to do he wouldn’t listen and I started panicking that he was going to hurt himself permanently. I actually started videotaping the tantrum because I was afraid that no one would believe me when I tried to explain its severity. Michael rushed home and was able to eventually pull Jude out of the tantrum (and calm me down as well). It was then that we decided that this was not “normal behavior” and we needed to speak with Jude’s Doctor immediately.
The next day we met with Jude’s pediatrician and communicated our concerns. She made the helpful suggestion that we reach out to Alta Regional Center and speak with them about our struggles. We did just that and Jude was evaluated by Occupational, Speech and Behavioral Therapists. At that time the Doctors and Therapists didn’t feel comfortable diagnosing him with Autism, but he was diagnosed with Sensory Processing Disorder.
Little Ruby was born right around this time. We were so overwhelmed with the joy of bringing her into our family, yet feeling very frantic about the future and doing what was best for Jude. He didn’t pay too much attention to Ruby in the first six months that she was alive, however when he did, he would offer her sweet kisses and loved her just as a big brother should.
Jude was eventually approved for services through Alta Regional Center. He received Speech and Occupational therapy until he turned three. He was progressing and after his third birthday was placed into a Special Needs Preschool in our school district. He’s done SO well in Preschool and his Teachers and Therapists are amazing, beyond anything we could have ever hoped for! Jude looks forward to school everyday and he loves his teachers so much!! It brings us so much joy that other people actually care about our sons well-being. Yet, Jude’s struggles and challenges have continued. He still has obstacles that we were concerned about and his Pediatrician recommended that we take him to the Neurologist to have him officially assessed again.
So we continued on the path of trying to help our son. Filling out paperwork, making phone calls, scheduling appointments etc. to try and get Jude further help. Finally we were able to get his appointment scheduled with the Neurologist, Monday September 23rd 1:30pm.
So today, after Jude got out of school, we made the trip down to Sacramento to have him assessed.
As the Neurologist told us of Jude’s diagnoses, it wasn’t a shock. Despite that, and even though you know that a diagnosis is “good” because it opens more doors for your child…which can lead to more success for your child’s future… there’s still an unstoppable part of you that that feels sad. Sad that there something wrong with your child.
Ignorantly, I assumed that I had suffered enough and faced enough challenges in my single life. That I should have earned enough good karma to enable my children escape of the struggles of the world. But that’s just not how life works. No matter how much you’ve overcome and how much you’ve tried to make your children’s lives perfect, sometimes we just don’t get what we want or feel entitled to. Only a parent can fully understand what it feels like to want your child to be “normal”. And only a special needs parent can understand what it feels to have someone tell you that they are not.
Today is the day my child was officially diagnosed with Autism. Autism Spectrum Disorder coupled with ADD.
Today is a launching point for our family, meaning this diagnoses enables us to be able to move forward and access services for Jude that we couldn’t otherwise. Yet, I am still his mother and there is a sadness in my heart for my son that he was not born “normal”. He will face more challenges than a typical child. Fear that he may be bullied or picked on more than other children. Fear that he won’t have friends, or be understood by others. We are Jude’s parents and we are going to continue doing for him what we have done for him before he was even born, our very best.
This boy continually fills our life with so much joy, love, humor and beauty. Ultimately he’s an intelligent child that just faces a few more obstacles than most. We will be by his side helping, encouraging and celebrating him every step of the way. We love you so much Jude and we can’t thank you enough for choosing us to be your parents.