Dear Sweet Mama,
You have been given an incredible, amazing, and heartbreaking gift.
You have been given a child with “special needs.”
The needs could range from severe allergies to severe handicaps and/or anything in between. Not that there is a spectrum and your story is worse than another’s mom’s story. Or her story is worse than your story. You just each have a story. And a journey that has been difficult. It may get easier. It may get harder. BUT you (WE!) are all “special mamas” together. We are all in this TOGETHER.
And it’s not the road you asked to travel down. You were hoping for the road that leads to Italy, Fiji, or Santorini. Yet instead your travel stop landed you in the middle of a war-torn country you’ve never been in. There are landmines to baby step around. There are well-meaning but insensitive people there. And there are downright nasty, unjust humans there, too, who make your struggle to provide everything your child needs, all that more challenging.
It is TRUE, though, that in this distant land of life with disability there are angels. There are lovely souls who care, and whose patience and compassion are as vast as the universe sky. There are angels each step of the journey if you look for them, in the smallest cracks of your day. YES.
Sweet Special Mama, do not think for one second that your experiences in Motherhood are in any way on par with families who have not encountered disability.
Do not think for one second you should be like THAT MOM, wife or family.
Do not expect that you will cherish motherhood and parenting in the same way.
Do not expect that you will not need breaks. Lots of them.
Do not expect to never fantasize what life would be like if your child was born perfectly healthy in every single possible way.
Do not condemn yourself for wishing, hoping, praying, and pleading for a re-do.
Do not condemn yourself for wondering if life would be easier for you, your husband, and your other children, if your child passed away.
You, Mama, carry heartache.
You carry loss.
You carry disappointment.
You carry an on-again off-again grief. And it comes in waves. And in your everyday life, it is there underneath the surface, threatening to come up.
It takes some of your joy. It makes you tense. It makes you more snappy, and less carefree-and-happy.
You have become more tender and you have become tougher as a result of this terrific trial in caring for your disabled child.
And it’s ok.
You are ok.
You are very ok.
You can do hard. You already have.
I know there are moments you absolutely want to curse and cry, “Why me? Why us?” You want to pull your hair out after a day of dealing with illness, or medical specialists, or anxiety or behavioral issues. That is normal. You are normal.
You need to vent.
You need to cry.
Who knew that the kitchen floor would be the place for a monumental conversation?
Kate hopped out of bed one night recently. I was puttering in the kitchen and she plopped herself down on the floor. I don’t know what stopped me from firmly giving the stay-in-bed-lecture. I stopped what I was doing instead, thankfully, and sat down beside her.
Maybe I intuitively knew what was coming.
Kate: I wish Ryan didn’t have any special needs.
(THUD…Did you hear my heart just pierce?)
Me: So do I, Kate. What makes you say that?
Kate: It makes me sad.
Me: That is ok to feel sad. It makes me sad, too, sometimes. (Darnit, then my tears start rolling…)
Kate: I wish it was a secret between our family and the school.
(Note: Ryan goes to a separate public elementary school from Luke and Kate, one that better suits his needs.)
Me: Are you embarrassed sometimes Kate?
Kate: (No answer. At first, she was silent with this question.)
Kate: I just wish nobody knew. That it was a secret.
Me: Well, in our family, we don’t keep secrets. Not unless someone has a surprise gift or surprise party. (Why I said this instead of just asking her if anyone said anything to her at school escapes me.)
Me: Its perfectly ok, Kate, to feel that way. Mom and Dad wish Ryan didn’t have ANY problems or struggles. We wish he was totally healthy, that his brain and body were not different from yours. Its ok to get sad, mad or frustrated, or embarrassed about it. We get sad, too.
At this point Chris chimed in and joined the kitchen floor party.
Chris: You know what, Kate? You are also kind of lucky to have Ryan as your brother. And he is so lucky to have you and Luke.
Kate’s eyes widened and she said, “Really?”
Chris: You will grow up to be such a sweet girl, with such a big caring heart.
Me: And you will be an even better mommy and wife someday because you learned so much from being a sister to Ryan.
Kate: I will???? (Big smile.)
Me: Yes, absolutely you will. God gave Ryan to our family, and even though its hard sometimes, we will all be better people, and nicer, stronger, and have more compassion.(At least I hope so…I think to myself.)
So I stood up from the hard kitchen floor and helped Kate get up. We meandered to her room, hand in hand, slowly. I tucked her in and kissed her sweet cheeks over and over.
As I walked away, I prayed silently, for Kate and Luke, to be spared any long-term anger issues, or any resentment or bitterness, from having a disabled brother, and a unique family story. May they not grow up feeling overburdened or neglected in any way. May they grow up to be people of compassion and patience, kindness and wisdom. May they turn the pain of this all into something beautiful for others in their world.
It's astounding to me that we have had 11 IEP’s for Ryan so far!
The first one was when he was almost 3 years old, and not even walking yet. He began his education journey at Sunrise Preschool in Palos Verdes, a special education pre-school, full of caring, skilled teachers, therapists and staff. I can still see us sitting in the physical therapy clinic on the floor for his evaluations. "Miss Jan," his forever-loving-PT, is the face I remembered the most that day. Fast forward to now, and Ryan is finishing his first year in middle school at Palos Verdes Intermediate School. He loooooves being in middle school, and I am told is beloved there by peers and teachers. Even if he has had a few "blips" as I call them, (incidents with difficult behaviors), he is loved and taken care of.
I must say we have always had a positive experience with our schools and our school district. It’s never gotten litigious ever, not even close. I am grateful that we have had good relationships with Ryan’s special education teachers (ANGELS!) and aids (ANGELS!).
Now let's talk about you, dear Mama (or Dad), as you embark on your very first IEP:
1). Set the tone positively. Go into it BELIEVING the school/district team will be collaborative, helpful, and truly work with you. They may have budgets and resources to deal with, but most likely the group of people at your IEP signed up to work with special needs kids because in their heart they want to make a difference in the life of YOUR child. You’ve just begun a new marriage with them and divorce isn’t in the realm of options unless you elect to leave the school district.
2). Bring coffee, donuts or pastries. You are planning for your child’s success, so make it festive. Again, it helps set the tone positively.
3). Prepare. Prepare. Prepare. Get copies of all evaluations or reports and proposed IEP goals AHEAD of time to review. Bring those reports and your notes to the IEP.
4). Don’t go alone. Bring a spouse, a friend, or an informed parent or friend.
5). Find out who will be attending the IEP. Make sure ALL key people will be there like special education teacher(s) and regular education teachers, and therapists (OT, PT, Speech, Behaviorist Lead, APE), school psychologist.
6). Put aside all pride. Even though it is emotionally exhausting to talk about ALL the things that are wrong with your child, its important to lay it out because it drives the need for services. You are there because your child needs help. This is the time to highlight the weaknesses, not the strengths.
7). Be clear in describing what you want and why. Remember the catch phrase SMART goals – specific, measurable, achievable, realistic and time-bound. If you are asking for a particular service, like speech therapy, tell how it will help your child learn and progress this year. An assessment of your child, previously done by a professional, should support this need. Sometimes an independent assessment (covered by you/your insurance is needed to support this.)
8). Know resources are available elsewhere, such as the local Regional Center. Schools are only responsible for education-related matters. For example, if you are needing in-home behavior therapy, that might not be covered by the school district but might be available from the Regional Center or other.
9). Take the IEP home and review in detail before you sign. Even if you agree with it, take home to review. Talk to others to verify you like all that is offered for your child’s education plan. It’s not all or nothing. You can agree with some parts and disagree with some aspects. You can write in any part you disagree with.
10). Speak as part of a team. Parents are part of the team and the school needs to listen to them. Try NOT to be confrontational. Speak expecting they agree, not asking if they agree. For example, avoid saying, “Why won’t you give any speech therapy?” That invites an answer to support why there should be no speech services. Instead say something like "I am concerned about his speech compared to his peers - how should we address it?" Even if it comes down to a compromise, parents should feel satisfied with the outcome, even if it wasn't completely what they wanted.
11). Attach an addendum with specific instructions or requests unique to your child’s diagnosis. For example, I have it written in that I need to be notified anytime there is extra food in the classroom. You can attach a bunch of handouts from PWSA/PWCF (your foundation/organization/doctor/specialist) and list them in the addendum as being required reading. Of course there's no way to make the team read the material, but if you've made it an addendum to the legal document they have to follow it and are responsible if something in there comes up.
12). Know your legal options. Know your legal options and alternative steps to take if the school is unwilling to provide appropriate services. Find and learn from other parents who have gone through administrative proceedings for recommendations and tips. Legal action may be a last resort, but your child is worth the battle if his or her needs are not being met.
13). Take a deep breath. You did it!
**A big thanks to my husband, Chris, and my friend, Julie Casey, for giving valuable input on this post. :)