Indulge me in some REAL TALK.
Our sweet Faify girl was born three months premature. She spent the first five months of her life in the hospital – growing, fighting for her life, tethered to cords and tubes and machines that helped her do both. Three weeks after her birth, she developed Necrotizing Enterocolitis (NEC), and lost over half of her small bowel and a tenth of her colon, leaving her with Short Bowel Syndrome – a condition that makes her susceptible to dehydration, malabsorption, and malnutrition. She has several glorious scars on her torso from multiple life-saving surgeries, all telling the story of the fighter she’s always been.
It wasn’t the a typical start to life by any stretch of the imagination. The sounds and interactions and experiences of hospital life simply aren’t natural, no matter how much kangaroo care we exposed her to, no matter how many days therapists visited her to assist with her development, no matter how many hours we spent holding and rocking and talking to her. It wasn’t home and her care largely relied on the limitations set forth by her fragility, orders from her doctors, and intensive care protocol. Even though she had the absolutely best medical care around, you simply cannot make up for the last thirteen weeks that she was supposed to be in-utero growing and developing as a baby should, nor the unnatural environment of hospital life.
Once she was released home, she was still not a “normal” baby. She had a central line for IV nutrition and a g-tube for nutritional purposes, too. We had to cart around an IV pole in our home that strung her TPN, lipids, and enteral bags full of very expensive formula wherever she went. If we went out in public – which was rare those first few months since she was extremely sensitive to germs – we toted it all around in an old Vera Bradley bag. We had to do sterile dressing changes on her tiny little chest, replace her Mickey button, flush her lines, run her feeding tube, and set up her pumps around the clock. It was intense.
She had several subsequent hospital stays during the first 2.5 years of life. All were set-backs, both physically and developmentally and nutritionally. (Pic below is of her escaping the ICU for a room on the GastroIntestinal floor until she was well enough to go home. August 2015)
At almost-five, Faith is deemed delayed across the board. She receives speech therapies, occupational therapies, and physical therapies on a regular basis to help her “catch up” to the expectations of a typically developing child and man, oh man, has our little girl exceeded our expectations. But, she’s not 100% caught up, though Brandon and I truly believe she will be on her own time. Faith gets to set that course, though, and we’re just here to guide, support, and teach her along the way.
She should be in her final pre-k year right now, heading to kindergarten next fall – the fall of 2019. She should also probably be in public preschool right now, for which she’d qualify no doubt. However, here’s the deal. I’m a teacher. And, I know the minute she’s enters the public preschool in our state, her educational path will be set (i.e. public preschool now, kindergarten next year). Simply put, she won’t be ready. She needs one more year to play catch up and I am SO OKAY with that. I already feel like childhood is a rush and that, as her parent, I can push the breaks when it comes to her education and the knowledge of the beginning of her life. Because one more year to prepare, one more year to grow and mature, one more year of support is absolutely NOTHING in the grand scheme of life, but it could be hugely helpful for her academic trajectory.
Currently, Faith is in the 4s class at a private preschool, 3 days a week (she did 2 days a week last year). Next year, I would like her to do 5 days of pre-k or kindergarten at a private school. She will continue her therapies through our Children’s Hospital and will hopefully qualify for drop-in speech services in our county so that she will enter kindergarten with an IEP already in place.
I am very curious what other parents of kiddos with special needs have done as far as entering school goes. Did you do public preschool? Did you hold your kiddo back on your own so they’d enter kindergarten later? Sent your kiddo before he/she was ready? Do you have knowledge to share regarding your experience that might help me with mine? Pros? Cons? I would truly love to hear! Feel free to leave me a comment with advice, support, considerations I should keep in mind or to share your own experience.
My newly turned 5 year old has a speech delay. Not a huge one from most stand points but it was enough for me to say “just one more year of PreK.” That said, he qualified and receives speech therapy from our public school so he has an IEP. I’m like you…just one more year is not that big in the scheme of things but it will make a huge difference in his future.
So, you are an awesome Mom and whatever you decide will be the best decision for your family and sweet Faith!
Yes! I totally get it! Thank you so much for providing your perspective!
As a momma and a kindergarten teacher I think your decision is a great one for your situation! If you couldn’t afford pre school or therapy I would be chiming in with a different perspective but I think an extra year for her to develop will set her up for even more success in her future years!
Thanks for the encouragement! And, you’re so right – we are able to afford private preschool and therapies, which I know isn’t a universal option. Great perspective to add!
We did vpk (free from state) but at a private school. Then moved to Public school for K so he could have a 504 and later an IEP if needed. We thought he might need 2 years in K but he ended up doing great. He was doing ok but once we got his 504 he just did amazing. He just needed that little extra support. We later added an IEP for speech. He is in 2nd now in the same Public school (where I also teach) and I’m just so proud of him.
Love hearing this success story! Yay for your son!!!! Thank you for sharing!
I wrestled back and forth over sending my twins to public K or leaving them to do private K. They were born 5 weeks early with no major problems but we definitely had some speech delays. They never qualified for any early services though. I teach 2nd and I was so worried about them. I honestly couldn’t afford to keep them at the private school for K so they are at my public school for K. So far they are doing amazing and the teachers haven’t noticed any major speech issues. If we were having issues I was just going to send them to the private school and pray every month I could pay my bills I would definitely add a year of private K or pre K to help your sweet girl get caught up!
Thanks so much, Jessica! I appreciate your perspective!
I just want to say you are doing an amazing job with your family. I love watching your updates and morning wake ups everyday on instagram. As a special education teacher I thinking keeping her 1 more year in prek is the best for Faith to help catch her up and at that age they don’t realize at all and she will be better prepared for kindergarten. I also think having an iep in place before she starts public school is a great idea to get her set up with services and some goals. Great job with your family and thanks for all your sharing.
Thank you so much, Kara! I appreciate your perspective <3
Abby, I know it varies by state and even district to district, but it could be worth looking into. I’m an occupational therapist that works for the public school district in my county. My entire job is providing private school/homeschool students with special needs with OT services (our district also offers speech). It’s through Child Find which is part of IDEA. If this is something that your district offers, Faith may qualify for it now. I see several students at their private pre-k or church based preschools and because it’s part of IDEA, it’s considered school-based services and funded by the district. Also, not a parent, but in my experience, many of these students have really flourished with an extra year to grow and develop before starting kindergarten.
I will definitely look into this! Thank you for the information!!!!
I teach special pre-k in a public school setting. I have had a couple of students that would have benefitted from another year of pre-k before going into kindergarten. Unfortunately, once a student turns 5 by the cut off date for kindergarten the school moves them into kindergarten. It is frustrating because that extra year of pre-k would be so beneficial to some of my kiddos. Many of these parents can not afford private preschool so they move their child up to kindergarten. So, yes you are definitely doing what is right for Faith. Kindergarten is so rigorous that waiting until she is ready is the right move. I wish all parents that needed to make that decision for their child had that option. Faith is lucky to have such wonderful parents and you are lucky to have such a beautiful and special child.
Yes, that cut-off and swift movement into K is what deters me from public preschool 🙁 I know it’s a WONDERFUL service, I just don’t think it’s the best fit for her – and many other kiddos who just aren’t quite ready. Thank you SO much for chiming in here as a pre-k teacher in a public school – such valuable information!!!
My oldest is in PPCD at our local public school and we’ve had the BEST experience. We’ve seen him grow by leaps and bounds in the last year. He has a severe expressive and receptive language delay and an anxiety disorder. He started preschool in a traditional preschool classroom and didn’t speak for several months because he was so intimidated by the other kids. Putting him in a classroom with other kids on his level really helped his confidence and eased his anxiety. He’s pretty much caught up now but if he wasn’t I’d hold him back a year as well. You’re doing the right thing, girl!
Thank you so much for sharing! I appreciate your perspective so much!
As a fifth grade special educator and a mama of 3 – one of whom I held for a year because she just barely made the cut off – holding Faith back for a year to be young and play and grow is the very best gift you’ll give her. She will not catch up right away. She’ll so benefit from the time to grow before the academics demands of school begin. We have never ever regretted holding our daughter. I have never ever heard of anyone regretting holding their kids back. Good luck!!!
I love that you put it as a ‘gift!’ So true! Thank you for sharing <3
Hi Abby,
My son too was 3 months early. He spent three of the hardest months of our lives in the NICU. He came home with an apnea monitor and oxygen. It has been an uphill fight for him and us. As a first time mom to an exceptional kiddo, I felt like I knew nothing about anything. My motherly instincts were nonexistent and everyone told me what to do with with him and when to do it. He received EI until he turned three and then the school district took over. Since he turned 3 in October he got almost 3 years of pre-k. The school has always worked really had for him and have given us everything we have asked for. He has had some of the most amazing teacher. There is something to be said about NICU nurses and good special education teachers!!!! Our son is now in 3rd grade and every IEP meeting is heart wrenching. The gains have not been as great as we have wanted but we love greatly and he is the happiest kid we know. The idea that he has ever been ready is something that we have never been sure of. As a teacher myself watching him fall further and further behind is oh so very difficult but every little milestone is a mountain in our house. My advice is to do what you feel is right and if holding her back for a year feels right, then do it.
Praise the Lord for good NICU nurses and teachers!!!! Amen!!! Right there with you! Thank you for sharing your story <3
I just have to say I applaud you! As a fellow teacher I see so many students (special needs or not) entering school before they are truly ready. I teach 4th grade and we have so many kids of late starting the year as 8 year olds, turning 9 rather than starting as 9 year olds and turning 10. The difference (for most kids) is astounding. In terms of maturity, social skills, academics, and beyond. I love that you aren’t forcing it just because “that’s where she should be.” You are making sure ahead is going when she is the most ready.
Yes, yes, yes! Hope that an extra year is just what she needs <3
I’m from Canada so our system is a bit different from the states.
I’m a special education consultant for a local school board and support early intervention for public kiddos pre-k to grade 2. I also have a daughter who is 3.5 that will likely have a. developmental coordination disorder diagnosis in the next few year. Our situation is a tad different. She has delays but she’s not high for severe funding and too young (by 2 days) to get mild/moderate funding. So we are in limbo. I’m currently taking on her therapy at home. Paying private therapist here and there for guidance and asking my friends (who are SLPs and OTs) for what to work on next. It’s hard work but if I don’t do it she won’t get any. She will be 5.5 when she enters kinder. When she enters the public school system I have to be careful as I work for them.
That is incredible that you’re working so diligently with your daughter at home! It’s not an easy task. Faith will be six when she enters kindergarten, but I really think it will be for the best! Thank you for sharing your story!
I teach developmental preschool in Ohio and I’m also the mom of a child with special needs. I typically encourage parents to hold kids back if there is ANY doubt about sending their child on. You will never regret holding her back. I agree with post above that said if you have the means to keep her in preschool then do it. I am a firm believer in letting her be a kid for as long as you can. There’s no turning back once she enters kindergarten. Take advantage of it now! You are your child’s number one advocate. No one will feel more passionate about her education than you! Go with your gut and have no regrets. Good luck!
I’m so with you on the ‘no turning back’ thing – which is what I fear. I feel like sending her too early could have multiple poor effects on her academics, social life, and general well-being. Thank you for your encouragement!
Trust your mommy gut. You know your child best. One more year won’t hurt. Being teachers we both know that an extra year can make a big difference in a child’s life. She’s lucky to have a mom who realizes what would be best for her.
That said I have a child with autism. I sent him to public preschool for 2 years where he was on an IEP and received his services there. It was a smooth transition to kindergarten as he was familiar with the building and routines. My suggestion is to make sure you start the IEP process early enough so that everything is in place from Day 1 of kindergarten.
Prayers for you both on this journey.
Yes, it’s that teacher voice that reassures my heart it’s okay to wait! I definitely want to get the speech services rolling for that very reason. Thank you for your perspective!
My Lily was born at 24 weeks. She defines the word fighter. She constantly amazes me at what she can do and how far she has come from her 119 day hospital stay. She started 4th grade last week. She had home visits through our school district starting when she was 18 months. She started K “on time” but is in an all day resource room and about a year behind her peers academically. She has always done things on her own timeline. She was not going to come home from the hospital any sooner or later than when she was ready no matter what I wanted. She was released from private OT and PT last December. She is absolutely amazing. I’m so glad you shared Faith’s story because tonight I was getting irritated that Lily wasn’t completing her homework “fast enough.” Both of you reminded me that she will always do things in her own time and own way. No need to rush her mama! Let her dictate her needs to you. Those preemies are SPECIAL!
I love hearing fellow preemie stories! You’re right – they are SPECIAL! Thank you for your perspective. I truly appreciate it!
Hello! I’ve never been one to interact with the “celebrities” I follow on social media, but I have to say your stories have a way of compelling me to reach out. I love your open and honest way of sharing your family.
I’m an Early Childhood Special Educator in WA state, so that is where my perspective comes from. First, I think you have the knowledge and experience as Faith’s parents to make the absolute best decisions for her. Trust your gut. Second, it sounds like you have really great systems of care and intervention in place.
Is she successful in the private preschool? Kudos to them for providing an inclusive learning environment!
The “ready for kindergarten” question is not unique to your family. I have conversations with multiple families every year, for students receiving intervention services and for those who are not. It sounds as if there is little choice on your end for giving her more time once she starts school? Our district seems to struggle with this also, but there are no fiercer advocates for the best interests of a child than parents and a passionate preschool teacher.
My advice-it doesn’t hurt to visit the public school and ask questions and see what is available there and how it may complement or replace your current plan, and trust your gut.
Thank you so much time for providing your insight and perspective! I love the idea of visiting the public school – great suggestion!!!
Abby, I think you are making the best decision for Faith. As both a K and 1st teacher throughout my teaching career the changes in curriculum and expectations have been astounding. In my state kindergarten is so much more in expectations as it was years ago. Now kindergarten has become a new “first grade”. I don’t think pushing Faith into public school is a neccessity. Many parents see that waiting another year has become their best choice for a variety of reasons—academically and socially. I know that you and Brandon are doing the very best for her!