My body betrayed me.  I have felt an immense amount of shame for years.   I birthed a beautifully imperfect child who has trampled through the garden of my dreams.  Her arrival made it muddy, and the trails aren’t worn in the same way they were before.  The flowers grow up in the cracks and the weeds run amuck while I try to redesign a path to find the parts that thrive.  Sometimes I need a machete to cut through the overgrown bullshit; an unwieldy and dangerous tool to find the smallest of blossoms.

I was supposed to have three children.  Three, beautiful, healthy children. 

Instead, I have two.  I didn’t trust my body to have another baby, so after my beautifully imperfect daughter was born, my husband had a vasectomy so that we couldn’t.  Not trusting my body feels unfair to both of us.  Each period is a mockery of the possibility that still exists but might have broken my family with another beautifully imperfect baby.  Each friend who dares to tempt fate with a third or fourth child unearths a longing.  To have an ache that never ceases feels like an unwavering wail sobbed into the wind.

I am the only one who feels the wail reverberate through my body.  If I talk about the wail and the ache and the longing, you say, “But you have one beautifully perfect child.  And God only gives us things that he thinks we can handle.  And you are so strong.  I just don’t know how you do it.”  That reassures me that the wail must reverberate only through my body because yours cannot handle the existence of it.  It tells the tale of a mother who doesn’t perfectly love her children.  It leaks imperfection out into the community, and we cannot have that. 

So, I keep it close. It is mine forever. I will share it with the few who understand and can sit in the silence and be uncomfortable with the imperfectness of my body and the wail that reverberates in it.

When you have a child with special needs, determination becomes second nature and frustration just settles into your bones.  There’s a weariness and a wariness that comes with parenting a special needs child; I am often unsurprised by information from doctors, therapists, teachers and specialists.  You can’t surprise me.  I live IN it.  The extremes of joy and pain, of exhaustion and elation.  I get it. 

The genetic test we took when she was 10 months old showed that baby girl had a de novo mutation. She has a megabase deletion on chromosome 6p.  She’s missing a significant portion of her DNA on which sits about 42 genes.  Of those 42 genes, geneticists have yet to determine what 10 of them even relate to.   We know 6 other kids in the world that have a deletion that is similar to hers, and each gene expresses itself differently in different people, so there’s not much to go on. 

Long story short, we don’t know what is coming and neither does any medical professional. We can guess and predict, but I’d rather not. Instead, I’d like to present her with every possible option to become the best version of herself at each stage of her life. This includes at school and at home.

So, in recently creating a presentation for local school speech therapists “from a parent’s perspective”, I’ve come up with a list of things that I need from every teacher and therapist as we start our relationship.

• Patience:  We are doing our best.  This is so hard.  I know a few therapists that had special needs children, and they told me that their entire outlook changed once they had a special needs child to care for.  Where they previously rolled their eyes when a parent said that they didn’t have time to work on weekly goals, they now spoke of empathy.  Where a regression or frustrating visit was previously blamed on parenting, they now saw a bad day and provided words of encouragement.  We are trying to do PT, OT, Speech, cook dinner, clean the house and spend some time with our kid just being a kid.  Sometimes it’s more important to just spend time with our kids. Sometimes it is a struggle to just get through dinner.
• Advocacy:  We are exhausted from advocating on our own.  We know that the school has limitations, but please fight for our kids as if they were yours.  At IEP meetings, don’t nod and smile – help me with data points and suggestions.  Please don’t be afraid to speak  up.  I am struggling not to cry – I need you to support me.
• Empathy:  I live in a world of shame.  I’m ashamed that I didn’t figure this out sooner.  I’m ashamed that I missed the opportunity to sign up for something.  I’m ashamed that I forgot my daughter’s medication one morning last week.  I’m ashamed that she spilled on herself at breakfast and I didn’t have time to clean it up.  I’m ashamed we were late to school last week.  My shame often shows up as anger and embarrassment.  I need your empathy and understanding.
• Continuous improvement:  Please, please, please accept help both from me and from the experts.  Please never get to the point where you think you know it all.  It is so incredibly disheartening to get halfway through the year and find that we’ve all wasted precious time.

You are so important to our families. Thank you for spending day after tireless, thankless day with our children. We love you and we need you.

My daughter had 2 seizures this past week.  It was the first time she has ever had seizures.  We entered into an unknown medical territory that many have journeyed through, but for us it was new.  And it was shocking.  And it is still terrifying.  We don’t often broadcast when something major happens, because we are fortunate to have wonderful friends and family who create a safe space for us to discuss our fears and frustrations.  Most people don’t know the ins and outs of our doctors visits and medical needs and worries and frustrations with the process.  We don’t tend to give difficult information to people, because they can’t do anything about it.

And there’s another reason we keep most of this to ourselves.  When people can’t change a situation or make it better for you, they say the WORST things.  They have terrible replies.  Things that make you feel worse when you hear them.

“God only gives special need children to special parents.”

“Special needs children go to the best parents.”

“God only gives you what you can handle.”

“There’s no one else in the world that could handle this the way you do.”

“I could never do what you do.  You are so strong.”

Good lord, just be quiet!  Do you really think that there’s a God picking and choosing who gets what child?  Do you really think there’s an eeny-meeny-miney-mo situation happening in matching parents and children?  Do you really think that God had a hand in making my life exponentially more difficult to build my character and make me a believer?  Do you really think that if you birthed a special needs child that you would just throw your hands in the air and give up?

Here’s what I think.  I think that my daughter is amazing.  I think that she touches lives and opens hearts that most other kids cannot.  I think that everyone who meets her has a different view on the world because of her.  I think I will always do my best to make her life better and easier.

I also think that if you birthed a special needs baby, you would handle it.  You would advocate.  You would fight.  You would figure it out.  You would find a new routine, a new structure and make a new plan.  Because you have to.  I wasn’t born with this resilience, this fight, this patience.  She brought it with her.  She came in a package that demands those things.

Here’s what I do not think.  I do not think that there is a God that is making tiny humans with chromosome abnormalities to build the character of those around them.  I do not think that God is intentionally picking parents for special needs children.  I can’t believe in that God.  That God sucks.

Being a parent to a special needs child is hard.  There are days I feel like filling my pockets with rocks and walking straight into the ocean.  My life has been forever altered because I have a special needs child.  I look at money differently.  I look at public school differently.  I look at children differently.  I look at charities and non-profits differently.  I look at other parents differently.  The world is different for me because of her.  It’s not good or bad, it’s just different.

The next time the parent of a special needs child let’s you in on their struggle, just listen.  Let them know that you hear them.  Be their advocate and let them lean into you.  And if you can’t find anything to say, that’s ok.  We all need a little quiet every now and then.

Along with special needs comes the Individualized Education Plan (IEP) process.  When a child with special needs is encroaching on their 3rd birthday, the county that you live in will begin an evaluation of your child to determine need and placement in a preschool program for early intervention.  

The process is murky at best, though I think that our county tries to provide accurate and adequate information to prepare parents.  Both my husband and I were confused about what each step would look like, so we asked several of our friends who had been through the process.  No one described it well, so our expectations were different from what we experienced.  Because of that, I wanted to take the opportunity to describe our experience in detail for those of you who may want to know more.

Six month out meeting:

In June, our county preschool coordinator, Matt, came to our house and met with my husband and I to gather some information and coordinate with us on dates for future meetings.  Three future meetings were scheduled in succession one week after another starting in November and ending in December.  We provided Matt with paperwork on Ouisie’s diagnosis as well as all of the documentation we had of her doctor’s visits, surgeries and therapies.  We also provided him with names and contact information for our therapists and current school so that they could contact them for their progress notes.  I believe it was at this point that we signed consent forms at this point to allow for the transfer of that information.

First IEP meeting:

We were told to bring Ouisie and her birth certificate to this meeting and that we would determine what she would be evaluated on going forward at the meeting.  My husband and I sat with 6 professionals around a table while Ouisie roamed the room playing with toys and eating the snacks we brought for her.  The professionals were the preschool coordinator (Matt), school psychologist, occupational therapist, a special education teacher, and our CDSA coordinator.   There would typically be a physical therapist in the room as well, but she was out that day.  We sat in a U shape, looking at a projector screen. On the projector screen there was a database called Goalview (by PCG Education), and Matt was entering in information into the database based on our answers to the questions asked by the professionals.  The questions they asked were to determine what areas Ouisie would be evaluated on in the following meeting.  Possible evaluations include Academic/Readiness, Cognitive, Communication, Behavioral Emotional, Motor (Gross and Fine), Medical, Adaptive Behavior, Social/Developmental, and Transportation.  For each area, they asked us questions to indicate Ouisie’s strengths as well as her needs.  

To be honest, the meeting went quickly and we felt that everyone in the room was supportive and open to conversation.  We brought all of Ouisie’s medical records with us, and as I mentioned before, we had already provided her medical history.  We also brought with us notes from her therapist at TEACCH and progress notes from her sign language instructor, both of whom had been through this process before.  Their notes were similar in layout – they mentioned their history with Ouisie, her strengths, her challenges and her emerging skills.  Her sign language therapist also listed her goals for Ouisie.  These were helpful to have, as they were better able to express some of her educational needs than we would have been.

At the end of the meeting, we were given a printout of everything they put into the database based on our conversation.  We were also given 2 questionnaires to answer as well as a medical form to fill out.  Additionally, they gave us 2 questionnaires for Ouisie’s teachers to fill out.

Because some of the evaluation professionals would be unavailable at our next meeting, we were told that they may visit Ouisie at school, and would coordinate that directly with our preschool director.

Second IEP meeting

My husband and I brought Ouisie to the same building and she went into a room with the OT, school psychologist, special education teacher, the assistive technology coordinator and Matt.  When we realized that he didn’t need to be there, my husband left to go back to work.  Matt came out after about 30-45 minutes to ask me about Ouisie’s vision, but other than that, Ouisie was in the room with her evaluators by herself for about 80-90 minutes.  I assume that the expectation is that the evaluation will be 90 minutes or less because while I was waiting for Ouisie to come back out, another child came in for an assessment.   Our appointment was at 9:30 and they showed up right around 11.  

When Ouisie came out after the evaluation, I took that opportunity to ask some questions about the printout from the last meeting.  Other than that, I had minimal interaction with the staff at this meeting.

Third IEP meeting

There is a place in my brain that knows everything I was told in the third IEP meeting.  I don’t access that part of my brain that often, because if I did, I would not be able to function on a daily basis.  A child with special needs often comes bundled with an incredible amount of joy that is wrapped up in fear, sadness, and an abundance of worry.   We choose to live in joy as often as possible in order to hold onto the hope that everything we are doing on a daily basis is going to allow Ouisie to live the fullest life possible.  With the being said, I have been crying off and on since we had this meeting yesterday afternoon.  Sometimes it’s a few tears, sometimes it’s outright sobbing.  I know it will eventually stop — this has happened before — but for now it’s here to stay.  A close friend died several years back and his dad gave me the best advice last week, “Sometimes when it hits you, it’s best to just stay down.  Like a boxing match.  Stay down for at least 8 counts until you know you are strong enough to get back up.  If you get up too early, you might get hit again and not be able to handle it.  So, just know your boundaries and stay down for as long as you need to regain your strength.”  So, I’m writing this while it’s fresh and staying down for now.

This was the meeting that I was most prepared for and knew the most about what to expect, but there is nothing that can fully prepare you to hear that your 35 month old is functioning on an 11 month old level across the board.  At the third IEP meeting, the evaluators gather all of their observations into the Goalview database.  We went back into the same room from the first meeting and we sat in a U shape, looking at a projector screen again.  All of the evaluators’ information is used first to determine eligibility — they had to first determine if Ouisie was actually eligible for services.  They went through their observations one by one starting with the school psychologist.  Each evaluator had their own area that they went through individually where they told us Ouisie’s strengths and weaknesses, and, based on what they observed, the percentage delay that they would attribute.  It is honest and kind, but heartbreaking.  There are 14 different areas of eligibility and Ouisie was determined to be eligible under the area of developmental delay.  From there, the evaluators outlined goals that they created for Ouisie based on their observations.  There were too many goals to provide here, but as an example, goals read like this:

Ouisie will participate in and complete self-help skills (hand washing, toileting, feeding, etc) starting (date) with 80% target achievement completed by (date).  Methods of Evaluation:  Observation, Informal, Observation/Demonstration; Evaluation schedule: Quarterly

Ouisie will engage in teacher directed turn taking activities with up to 2 peers, starting (date) with 80% target achievement completed by (date).  Methods of Evaluation:  Observation, Informal, Observation/Demonstration; Evaluation schedule: Quarterly

Ouisie will walk fast with controlled speed for 20 feet starting (date) with 70% target achievement completed by (date).  Methods of Evaluation:  Observation, Observation/Demonstration; Evaluation schedule: Quarterly

After we read through all of the goals, each therapist told us their recommendation for therapy that would be provided throughout the week.  Recommendations vary from child to child, but we heard things like “speech therapy 2x weekly out of class for 20 minutes and 2x weekly in class for 30 minutes.”

Based on those therapy needs, the evaluators provided a recommendation for Ouisie’s schooling.  In New Hanover County, children can qualify for 2, 3 or 5 days a week.  Due to all of her needs, Ouisie qualified for 5 days a week of a full school day from 8:00-2:30.  We learn about her school assignment next week.  Matt told us that it is dependent on both geographical location and available space.  Before we make the decision, we will go on a tour of the school.  I am hopeful that it will be an incredible experience where we see that Ouisie will be safe and loved and challenged to her fullest ability.  We’ll keep you updated.

My recommendations:

• Always take someone with you for the meetings.  If your child’s other parent or guardian is not involved, see if you can bring a therapist, close friend, grandparent or someone else that you trust.  It is important to have a second set of ears and someone to support you and your child.
• Read everything they give you.  No matter what you think you know and what you remember was written, it’s always worthwhile to read back through the material to make sure that things are correct and nothing was missed.
• Keep a running list of questions to ask.

Organizations that provide helpful prep for IEP meetings:

ECAC

FSN

CDSA