My daughter was discharged from Boca Raton Regional Hospital as a healthy baby girl. She was full term, and I had a healthy pregnancy/delivery. We chose to name her Brielle, because it meant “God is My Strength”. And in hindsight, it fits her perfectly, because everything she has been through, God has been her strength!
When we got home she didn’t want to nurse. After about 6 hours we noticed she was extremely lethargic & brought her to West Boca emergency room. Where they admitted her & said she was displaying seizure-like activity. They were able to stabilize her for further testing. An MRI showed lack of blood flow to her right occipital lobe, which suggested a neonatal stroke. However, they were never able to locate the blood clot. After being transferred to 2 other hospitals, Brielle ended up at Miami Children’s & was under the care of some amazing physicians. After about 2 weeks she was discharged & it was a waiting game for test results.
On November 19, 2014 we had the proper diagnosis of a Chromosome 9p24 microdeletion. The exact interpretation is: “A section of 5.2 MB was noted on chromosome 9p24 .3p24.1 (203861-5464014). This deletion is associated with dysmorphic features, congenital heart disease, developmental delay, abnormal genitalia, & hypertonia. In Brielle’s case, after seeing numerous specialists we were able to eliminate everything except developmental delay & speech delay. I am a firm believer in “everything happens for a reason”, and am grateful for everything we have been through. Without Brielle’s early hospital visit we would have never of known of this chromosome deletion & would never have been able to do early intervention.
At about 4 months old Brielle went through “Early Steps.” (Early Steps is Florida’s early intervention system that offers services to eligible infants & toddlers, age birth to 36 months, who have or are at-risk for developmental disabilities/delays). She was able to have a Physical Therapist, Occupational Therapist, & eventually a teacher & Speech Therapist come to our house once a week. We also opted to receive additional PT & OT through our insurance. (ALWAYS CALL & CHECK YOUR BENEFITS!) OT was really hard for Brielle because she hated being touched. How do you learn anything if you cant do hand over hand to teach them? Practice, Patience, & Persistance. Brielle needed PT because she had low muscle tone & needed help sitting up, stretching, crawling, walking, etc. And needed OT because her fine motor skills were fairly delayed. Examples were as a baby she didn’t use the pincher method to pick things up, and didn’t point at things. She was/is extremely sensory seeking. She would rock back and forth if something was behind her, and shake her head back and forth constantly.
Brielle also needed the Doc Band because she developed torticollis & PT helped stretch her out. But because her head favored the right side constantly, she ended up having plagiocephaly. Our pediatrician referred us out & we went with Cranial Technologies & OMG what a difference! After 2 bands and months of Brielle wearing the Doc Band, she graduated. (Check out the before and after pics)
We decided to put Brielle in preschool at the age of 2. We went with Discovery Preschool in Coral Springs, FL. And we chose it because they were NAEYC accredited, we got the homey feel, & they actually had a curriculum for a 2 year old! She was the more reserved 2 year old. She wasn’t scooting around the playground, instead she observed & won the hearts of her classmates. Even though her vocabulary was limited, the other kids ran to her & gave her hugs when I would drop her off. (That would always melt my heart) She loved the computer lab, & music class. She wasn’t very fond of the sensory table & “new” activities. I decided that it would be more beneficial for her to receive OT at school. And in fact it was! For all the activities Brielle did not want to participate in, her teacher would let her OT know & her OT would do a 1:1 & eventually she would enjoy the activity or participate.
When Brielle was 2&1/2 , we met with her neurologist. He brought up the topic of Brielle possibly having ASD (Autism Spectrum Disorder). He recommended upping her speech. (I WISH SOMEONE WOULD HAVE TOLD ME THAT DOING SPEECH THERAPY ONCE A WEEK ISN’T ENOUGH!!!!) Also, he wanted us to look into a ABA therapy program, & also work on eye contact. After upping her speech to 3x a week, we definitely saw/heard more of a difference.
She got evaluated for Child Find, it’s when your child is leaving Early Steps & transitioning into a pre-K program through an Elementary school. She got an IEP (Individual Education Plan). In my opinion, seems like torture for the kid to get tested. I feel like they should allow the childs therapist’s to participate in the evaluation. Instead, you bring your child into a unfamiliar place, with unfamiliar faces to make them do all these tests. Needless to say Brielle cried, almost the entire time. I know as her mom what she was capable of & she couldn’t do anything because she was overwhelmed. When we came back to get her results, they actually saw her playing appropriately with toys & actually using her words. (But by then it was too late, her IEP was already set up). They basically were giving her 150 minutes of speech a week (and that does not mean it’s 1:1), they were NOT going to give her OT even though she was receiving OT 2x a week, they wanted her to start and IF she needed it, they would reevaluate her.
Right before she turned 3, we saw her neurologist again. And it was a hard diagnosis to swallow. After going through the questions, it was 50/50 but he went ahead and gave her the ASD diagnosis. It’s hard to say because we know her chromosome microdeletion could be causing the delayed speech. I remember wanting to burst into tears, and my eyes filling up as he kept talking. BUT I looked over at Brielle, and she was flipping through a book & I said to myself she has come so far & she is so amazing!!!!!! I can’t be sad, I have to continue to show my daughter what she has shown me, strength & courage.
Shortly after the diagnosis, we decided it was best that Brielle went to a ABA therapy program instead of Child Find route. When we were looking at schools, we saw a couple that were traditional ABA, where it was a child and a therapist in a small room doing their 1:1 & basically looked like “training” of a kid. Some schools didn’t even have a playground! How do you learn to be a kid if you can’t even play? And then we came across Project Brilliance. The “new” ABA therapy where you learn through play. It was heaven sent! And what seemed even more perfect was their new location was going to be 10-15 min from our house. This facility is bright & so welcoming! It has a sensory gym, a indoor playground, small sized classrooms, 3:1 student to therapist ratio, and their curriculum is awesome! 1:1 MAKES A HUGE DIFFERENCE! They do everything to make sure the kids are hitting goals & smiling. I love the fact that they have a observation room because I can see what Brielle is doing with her therapist and do the same at home. I truly believe she is blossoming each and everyday because she is surrounded by people that love her & BELIEVE IN HER!
I have seen a tremendous growth in Brielle & am excited to share everything we have done for her to get to this point. I know not everyone’s journey is the same, but if we can all come together & support one another & gain some information along the way, this venture out into blogging would make it all worth while. I always say what is little to you… is HUGE for me. A kiss, a hug, affection, engaging in songs, listening, endless smiles & laughs are all HUGE things for us!
I will be posting about some resources I have used, and any other information that I feel would help Broward & Palm Beach County, FL.
If you have any questions or comments please feel free to email me. I would love to connect with you! Thank you for the LOVE…