Who is Jaslynn?
Jaslynn is 7 this year, attending SPED school at AWWA. Her diagnosis is Pitt Hopkins Syndrome which is associated with GDD, Hypotonia and Microcephaly. She has a lesion of alphasia cuts on her scalp since birth. Although she had a few seizures episodes, she was not put on any medication to further prevent any seizures from happening.
Being non verbal, Jaslynn is only able to reject by shaking her head or to wave her hand. She is a happy girl who likes music and movement. Jaslynn is very fortunate to have an adult sister, who always sings and dances for her. It takes a lot of guess work for us though to know why she throws a tantrum. Most of the time we would be left wondering why she is upset.
For her mobility, she uses a Kaye Walker to walk which also helps her to strengthen her core muscles. Most of the time she is scooting across the floor using her butt.
Jaslynn takes solid food and formula milk as her main staple. Due to her weak muscles, her food is cut into small pieces for her to chew more easily. We also do daily chewing therapy to help her strengthen her chewing strength.
Jaslynn also has high astigmatism. She starting wearing a pair of spectacles at a young age of 2. She also went through a minor day surgery operation for her left ear hearing loss due to Otitis Media with effusion(OME). Otherwise her condition is very stable and only needs regular check every 6 months.
It maybe a tough journey for her but she has us to be with her ❤!
Being a parent/caregiver for a special needs child is never easy as we need to keep our eyes on her 24/7. We only discovered about her condition when she was not hitting her milestones at one year old. After seeking advice from KKH, we were devastated to know that she has GDD and Hypotonia and that her head is actually smaller than other kids. To best help Jaslynn, we enrolled her for EIC when she was two. We also placed her in a infant day care center while I, as the mom, continued to work part time. Due to the center’s closure and also her slow development in her fine and gross motor skills, we could not find any center that was willing to accept her when she was four years old and older.
We decided to take care of her on our own as we also had no faith in getting a helper to care for her needs. Both husband and I have since left the work force. My husband is a Grab Driver which gives him more time flexibility. It was a very stressful transition, for myself being a full time caregiver and also having to manage the high household expenses at the same time , depending on my husband as the sole breadwinner. I kept asking myself why my child was so different and blamed myself for not taking good care of my health during pregnancy.
Fortunately with the moral support of my family and friends, I gradually opened up. I have also become more patient. To be able to see her slowly improving and achieving every small milestones, I really have no regrets becoming a full time caregiver.
After knowing her diagnosis in year 2020 from the genetic tests, I started to find out more about her condition online and that is how I found out about RDSS. I felt inspired by the patient stories whereby most of them are on high support and are more challenging to take care compared to the needs of my child. I believed they too went through a lot of sacrifices, and shower their child with lots of unconditional love. In the support group chat, we would always receive warm greetings and advices from one another.
Thank you RDSS for giving the support and encouragement that we need!
From my experience and what I saw in other parents, I have learnt not to give up on our loved ones even though they are special. Perseverance and tolerance is what we need the most during our caregiving journey. To see them grow up and their smiles, it simply make our day.
Love Is Not Rare! ❤