In September 2009 we found out we were having a baby. Eight years earlier we had our beautiful Leilani, so to find out I was pregnant, it was quite the surprise. After getting over the initial shock we were so excited to welcome a new member to our little three person family. Everything was going smoothly until Halloween. We had taken Leilani trick or treating at our local mall. We had been walking around collecting candy for a little less than an hour before I felt something was wrong. I went into the bathroom of a Subway restaurant and saw that I was bleeding. I immediately felt my heart race and being so scared. I was quickly taken to the emergency room, I was told everything was okay. This heavy bleeding (sometimes with clots) would continue on and off until December. Need less to say I was placed on bed rest. I was never given a reason at that point as to why I was bleeding.
Towards the end of my pregnancy, I was told a few times about seeing extra fluid in the back of the baby's head. My high risk OB wanted to perform an amniocentesis at 32 weeks gestation. We refused. The doctor mentioned hydrocephalus and how a shunt would be a possible solution. At 37 weeks I had a planned c-section. Kaleo was 6lbs 7 oz and perfect in everyway. That same day they did an ultrasound of his head and I was told he did not have extra fluid in his brain
Kaleo from the start was so immensely loved not only by myself and his dad but by his older sister who was completely over the moon with him.
Kaleo pretty much reached all his milestones on time. He walked at 12 months. When we would crawl he would tuck his left leg underneath him and drag it. I took him to see his doctor and a physical therapist for an evaluation. They figured it was a sensory thing and he would grow out of it.
At 16 months, Kaleo, was not speaking. I took him to his doctor, once again. He told me he was fine, that it just took some kids a little longer to speak.
At 18 months, Kaleo was still not speaking. Once again, I took him to the doctor. Told him how he didn't speak, hardly slept, wouldn't answer to his name, didn't look me in the eye. He said to give him time and wait until he was 2. I didn't agree. I took it upon myself to take him to speech therapy.
We were SO blessed to find a simply AMAZING speech therapist. She was the angel we needed. She was more than a therapist to him/us. We voiced our concerns she referred us to a developmental pediatrican.
On May 21, 2012. Kaleo was diagnosed with autism. He had turned 2 less than a month before. Hearing the word autism come out of her mouth was more than I could handle. The thing that popped in my head was 'what will become of him when I die?' the thought of him being institutionalized felt as though the wind was knocked out of me. She explained what we needed to do, what therapies he would need and gave us information on a support group. I spent most of the day crying.
The rest of the week was not much different. I immediately started making phone calls and finding out as much as I could about autism. I knew of autism, as Kaleo's cousin also has autism, but I had not experienced it on such a personal level. Once again, his speech therapist was there. Being the amazing therapist and friend. She listened to me and helped me in ways I don't think I could ever fully express.
Kaleo did not speak, would not look people in the eye, toe walked, spun his toys, would stare at the ceiling fan endlessly, would not sleep, would start screaming in crowded places, he would stim by running back and forth. He would not sleep in his crib or play pen. He preferred to sleep in his infant car seat, if I tried taking him out once he was asleep to put him in his crib he would immediately start screaming.
Kaleo was receiving speech, occuptional, physical and ABA therapy, in addition to an early interventionist that would come to the house twice a week. Slowly, Kaleo started making animal sounds, then 'cow' which gave way to him saying mama and meaning me! (although his dad doesn't let me forget that he said 'dada' first lol). Hearing him say 'mama' for the first time made my heart soar. Although the first time he said 'juice' I think really was the quintessential moment for me as it was the first time ever that he had expressed a want or need. More and more words came along, he would look people in the eyes randomly, he started playing with his toys appropriately as opposed to spinning them but with the improvements came severe meltdowns. My heart and soul were crushed when I would see him melting down on the floor, screaming and nothing seemed to help. Through ABA I learned the way to deal with his meltdowns. It taught me how to work with him when he was having a meltdown but his meltdowns continue to this day (some are more severe than others).
A few weeks before he turned 3, Kaleo had a brain MRI. In that MRI we found out Kaleo had a cyst at the base of his brain. According to the doctors it was the result of a stroke that he must've had in utero. They assumed it happened during the time I was bleeding extensively while pregnant. Once again, my world came crashing down. Why was this happening to my baby???? was it something I did??? something I didn't do???? A few months after that Kaleo was diagnosed with epilepsy, following several EEGs. He began taking Lamictal for his seizures.
Today, Kaleo speaks non stop, although at times he will still use the sign language his speech therapist taught him. He continues to toe walk but wears AFO leg braces. He's slowly becoming more social, although the first time you meet him he will hide behind me. He loves to dance and sing. He is obsessed with dinosaurs, monsters university and his iPad. His love for his sister is just as strong as ever, their bond is simply unbelievable.
Kaleo's diagnosis has resulted in us as a family becoming more involved. Leilani writes her own blog on her experience of having a brother with autism, his dad works extensively with Autism Speaks and recently became involved with Beards for Autism
I try my best to spread as much awareness as I can and I have been lucky enough to be there for others who feel or have question about their child having autism.I simply want to be there for that person who is feeling lost about their child's behavior or diagnosis. I do not consider myself a autism advocate, I am simply an advocate for both my children, one who happens to have autism. Hopefully within this blog and my future posts it will help someone else become that advocate that child needs you so desperately to be.
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