Dearest Mommies and Daddies,
Due to recent family events, process of moving and medical emergencies with our son, I apologize for my delay in my next written blog post. Our next podcast will be this coming Monday and you can find our up to date episodes on PodBean!
Tonight, I wanted to share with you about our daughter Kaylees progress with homeschooling and our son and his most recent medical diagnosis and his transition back home.
As we finally wrap up week nine of homeschooling with Kaylee, academically Kaylee is soaring! She has mastered most of her set goals from week one which includes, making the Sign of the Cross, sequencing in 4 steps, mathematical concepts of more and less, reading up to 15 new words by sight and associations, identifying colors of objects, 90% mastery of letter sounds and able to complete 8 art projects! Academically, you can see Kaylee is doing exceptionally well, with a few setbacks but achieving her goals steadily and with happy progress!!
However, Kaylees behavior, within the past few weeks since week five, has risen sky high. When she left her autism preschool, she had a B.I.P. for elopement, disrobing and delayed echolalia and now, not only does she remain to have these behaviors but she has aquired texture issues again with clothing, changing her clothes about 15-20 times a day. We really believe we can’t seem to find what it is she is feeling but thank goodness I have a great friend who has been aiding me in strategies and guidelines. Thanks girl!
Kaylee engages in her echolalia amidst all of her activities, daily and we have hit a serious crossroad because her academics have come to a complete hault. Kaylee is unable to stay on task now, does not respond as well to demands placed and her need to change clothes and re enact TV episodes… has all left me at a loss, not just as her teacher but as her mom.
Not only am I unable to connect with her as I do with my eldest daughter but she simply cannot hear me the way I need her to and remain focused and able to achieve her goals each day. But again, with help of a fellow autism mom, I have much hope we will get through this. Kaylee, although tough to reach, knows in her heart, I know, that she can rely that I will do whatever I can to get her through her next hurdle.
Now, I want to share new developments with our little boy, Sean Jr. Without revealing too kuch medical information, I don’t know if you remember some posts a few months back about Sean exhibiting seizure like behaviors? It was first noticed in EI when he began center based education. We were alert. We took data. We took him to a doctor and tests read negative.
Now, one year later, and yet still exhibiting same behaviors, has now received a positive EEG of abnormal brain activity. Following that visit, my husband and I sought out a second opinion to see if the data would be consists across the board. The next doctor, a prominent NYU neurologist, agreed that the EEG data is concerning and our son then got his first MRI, with sedation.
If you have ever had to have your baby sedated because you know the end justifies the means, I would have rather walked across and through fire for him then to watch that. In an instant, they took my son from me. His eyes rolled into the back of his head. He dropped to the table, out of my arms and I had to leave the room because I’m pregnant and I felt I couldn’t breathe. For 30 minutes, I was in the dark, I could not be with my baby during this tough time and yet I wish I hada radiology degree to see what it was that they could see.
In any event, days later we received a call from the doctor and it was positive for underdeveloped or smaller hippocampus on the left side of his brain. Medically, it may mean nothing but as a mom and someone who loves him most, I felt like I was punched in the chest. The doctor continued to explain sometimes it can typically be asymmetrical but in my son’s case, because he has systematically engaged in seizure behavior, the doctor is concerned. He has been officially diagnosed with epilepsy and we are awaiting his next mri, with a 3t magnet, scheduled for mid Decmeber. This next mri will give the doctor a more in depth look to help see what is exactly going on with our little boys brain.
Now, I called a meeting with the doctrine and his team and we have arranged that for the next six weeks, due to the unavailability of a one-to-one aide and his new medical diagnosis and emergency, he will be home with us and receive home services until he return in January, for integrated learning, where the ratio will then alow for Sean to have a one-to-one aide to keep him safe.
As you can see, we have many unknowns and challenges with our daughter and now, our son. God has never failed to challenge us but also continues to love us. You see, although I am deathly afraid of the worst and don’t know how my children will improve it not, I have great faith.
God has never left my side ,through the good and the bad. He has gifted two of our children with Autism and now seizure disorder in addition and yes, I still call it a gift.
For months and months, I have taught here and on my podcast, that Autism is not something to survive but something to embrace and love. It deserves tender attention and devotion and comes with a relentless exhaustion beyond words. But moving forward and as I pray at night, I believe strongly that this is all for a reason. God loves our babies so much, me and sean as parents, that he chose us to do it with.
Whatever message and reason God is trying to convey and explain, my husband and I embrace it through all of the upcoming fear, anxiety, worry and unknown. We will always have something about our parenting journey that we have no control over. Our daughters severe behaviors and our sons brain development or lack thereof, are clearly things we cannot control. They have been given to us and our family and we accept it, just as they are, as perfect as they are. Sean and I are doing all that we can and we assuredly will never give up.
So if you are facing challenges that are similar or things that are worse, have faith, don’t give up and love your children with understanding, empathy and tender care. Find and confide in those around you that you trust when you hit your roadblock. We all have all different kinds, so dont hold back and share it with those you love and depend on to walk you through. I am so thankful I have great friends that get me, our children and our family, especially Corinne.
So as you continue on, remember, they are our babies and who better to advocate , defend and protect so that they get all that they need and deserve.
I love you Kaylee and Sean Jr. You continue to inspire me as a woman, mother, wife and Christian. You enhance my love and faith in God each day and when we have our tough times, God is with us most. Thank you for being the very reasons why I now know what life is all about and how much God really does love because he gave you to us!
With time, terror and transition, we have much hope, little doubt and great, great faith!