Hand to Hold's Official Blog: Written by Parents for Parents

Not Delayed Enough: Navigating School for the First Time

Lily on scooter board

Lily on her scooter board at home

Like many parents of preemies, I have remained hyper-vigilant about the care and development of my surviving micropreemie triplets.  Early on we are taught how important Early Intervention is to ensure our babies hit their milestones as infants and toddlers.  My husband and I felt our girls started life with so much stacked against them that we vowed to always advocate for the very best for our girls, well past infancy.

Avery and Lily are now six years old and will start first grade in the fall.  Both girls graduated from EI services when they were two years old and neither qualified for services through the school system once they hit age three.  As such, we have continued with private Occupational Therapy services for Lily due to Sensory Processing Disorder.  She has also been followed by a Developmental Pediatrician for anxiety and OCD tendencies.  We truly are thankful that the challenges she has are manageable at home with a sensory diet, but when the girls were about to enter public school for Kindergarten I had some fears of my own.

Without an IEP (Individualized Education Plan), Lily would not be tracked or supported within the school system in terms of Occupational Therapy.  The therapists at school wouldn’t be allowed to work with her, nor would there be coordination between the therapists and her teacher to ensure any specific needs would be met.  We had to take on the role of advocate and liaison between our private OT, Developmental Pediatrician and the teacher.

Some may say: “What are you complaining about?  Be happy she isn’t delayed enough to qualify for services!”  But for me, I knew all too well what could happen in the long run if Lily’s needs were not met appropriately.  While my younger sister was not a preemie, I watched her struggle in school for years, barely making the grades to advance each year.  School mornings were full of drama and tears because of her anxiety and difficulty with clothing or the seams of her socks.  Twenty years ago no one knew about SPD and it took my mother years to finally convince the school administrators to test my sister for learning disabilities.  Lo and behold at the age of 14, my sister got the help she needed and was on the A/B honor roll!  But the damage to her self-esteem and self-confidence had already been done and as a young woman she still wrestles with self-doubt and anxiety.  This was my fear for Lily, that she would have a school experience like my sister – not being significantly delayed but needing extra help at the same time.

8 Tips If Your Child is “Not Delayed Enough” To Qualify for Services

  1. Meet with the principal.  I scheduled an appointment over the summer, before classroom assignments were made to ensure the principal knew about Lily, her medical history, and her anxiety & sensory issues.  I brought evaluations and reports from her OT and Developmental Pediatrician.  It was imperative Lily was matched with the right personality of teacher with the right teaching style for her.
  2. Meet with the teacher.  I had several phone calls and a face-to-face meeting with Mrs. N. before school started.  I shared all the information I shared with the principal.  This information led to the realization that the seat Mrs. N. assigned (in the back corner of the classroom) to Lily was not in her best interest.  We moved her to the front next to the teacher’s table.
  3. Continued communication with the teacher.  Any time I was aware there would be an assembly, program, field trip or other situation that could be overwhelming for Lily I made sure to point this out to Mrs. N.  She responded by keeping Lily near her and checking in with her to make sure she was handling the situation well.
  4. Become involved in the class.  I volunteer in the class, read to the class, and attend all school functions.  My help was appreciated by the teacher, established a trusting relationship between us, and I always acknowledged and appreciated the extra steps she took to support Lily.
  5. No concern was too small to point out.  I thoroughly reviewed all of Lily’s worksheets that she brought home and could easily identify concepts she was struggling with.  I spoke to Mrs. N. to make sure she was aware and asked what I could do at home to help Lily understand.
  6. Communicated with our OT & Dev Ped.  I made sure to keep good notes for our therapy sessions and follow up appointments.  After showing a few worksheets to both professionals we realized Lily’s handwriting needed extra attention that couldn’t be given in the classroom.  The result of the extra work with the OT was truly amazing!  Her penmanship improved dramatically.
  7. Don’t worry about being a squeaky wheel, and be respectful.  Yes, there are 24 other kids in the class.  Yes, each child deserves the same attention and instruction.  Yes, Mrs. N. has a full plate.  But my responsibility is to my child and she’s the one I care most about.
  8. I kept my multiples together.  This is unique and different for every family with multiples and for every child.  For Lily and Avery we chose to keep them together in Kindergarten.  It was such a huge transition from our little church preschool to a public school with 125 Kindergarten students.  With Lily’s history of anxiety and OCD we felt the comfort of having her sister in her classroom would help ease the transition.  Mrs. N. rarely had them in the same work group so each would develop independently, this worked very well.
Avery & Lily at Fairytale Town Day

Avery & Lily at Fairytale Town Day

Thankfully we are in an era where SPD is becoming more well-known with research and resources to support parents, their children, and the teachers.  If you find yourself in a similar situation, I encourage you to keep communication lines open with the school.  Have those conferences, make those calls, share those articles or books. Don’t be shy and stick to your guns.  You are your child’s best advocate!

 

Keira Sorrells About Keira Sorrells

Keira Sorrells (MS) is the mother of triplets, Avery, Lily, and Zoe, born at 25 weeks. Avery and Lily spent four months in the NICU and Zoe was there for 9.5 months. After coming home, Zoe was rehospitalized at 14 months and died suddenly from a secondary infection. As a result of those experiences, Keira founded the Zoe Rose Memorial Foundation which offers support to parents of premature infants and those who have lost an infant; as well as the Preemie Parent Alliance, which connects parent-led, preemie support organizations across the country. Her faith and connecting with preemie and bereaved parents has given her hope when it was hard to find. Follow her on Twitter, Facebook or on her personal blog.

Comments

  1. Nicholle Sorrells says:

    My twins were micro preemie and just turned three, one just qualified for public preschool for speech delays and her sister who has some sensory issues too did not qualify. It was always my plan to keep the twins together so I am still adjusting to the idea for this fall. Thanks for sharing these tips I know they will help me! Just reading this I can sense what a really great Mom you are! God Bless You!

    • Hi Nicholle, first off we share a last name :). Second, I completely relate to your apprehension about separating your twins. I’ve been able to keep my girls together since preschool but this fall they will be at a new school for 1st grade. The new school always separates multiples. I may be the one having the most difficult time with the idea! It’s a hard thing to come to terms with, but I hope that both of your daughter’s needs will be met.

      I will tell you also that I used the same tips I noted below when they started preschool at age 3 1/2. I met with the teacher, the director & the music teacher to make sure they understood my daughter as best as possible before she even started. Please feel free to contact me if you need some encouragement. There are also some great resources online for kids with SPD.

      God bless you and your sweet twins!

  2. Congratulations on your isightful, balanced and informed management of yourdaughter’s developmental needs. It’s a shame more parents don’t grasp or enact your responses within the existing systemic constraints, accessing privately what’s needed and communicating effectively as well as co-operatively dealing with their school setting.

    While ideally all children with support needs would have them met in public school funding, these rescources when limited are dealt back to front.

    It is the children with less severe disabilities that ought to be prioratised. It is these ones that can make important gains to function effectively in the future with that extra timely assistance while required. While you’re capable of knowing what needs to be done and getting it done, sadly many salvagable kids don’t have parents like you and risk poor outcomes.

    Logically, the far more severley disabled children with combined low cognitive functioning, won’t end up with any significantly alteration to their life outcmes, regardless of whatever specialist help is given at school.

    You’d think that funding could become altered to look then instead at all kids with any level of support needs and include as another criteria a childs capacity for achievement from intervention.

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