I got a really good education. Without trying too hard I was able to get B's and some A's and I took some honors classes, too. I was choir president, in the plays and musicals, attended a weekly before-school Bible study all four years, and was friends with good girls who were kind and fun. Socially speaking we were also pretty middle class and pretty happy about that. It's nice to be liked enough that no one ever will pick on you but not popular enough to have deal with the pressures of being, well, popular.
I liked school Kindergarten through 12th grade and I always had a good experience. I want that for my kids and I have hoped and prayed that they would all have similar experiences: decent grades, good friends, never bullied, never having to deal with too much pressure regarding sex or drugs or drinking, enjoying classes and teachers and learning.
So having a kid with special needs has been hard on me. It has thrown all kinds of worries into my prayers and tossed away my hopes. I know that this is not about me, and wow I sound like an ass right back there, but I hope you understand that all of this is because I want what is best for my child and yet I am afraid that they will suffer greatly and I won't know how to help them.
I don't know if you have a kid with special needs or if you've ever been to an IEP meeting. In case you haven't let me explain it a bit. An IEP meeting is where the principal, special ed teachers, therapists / specialists, general education classroom teacher, parents, and possibly others (nurse, school psychologist, advocates, etc) come together to look at what your child can(not) do and what the standards / goals are for their grade. Together personal goals are set and accommodations are incorporated (aids, extra time for testing, speech therapy, etc). Everyone there cares about your kid and wants to see him or her thrive and excel. But mostly what they do is tell you all the things that are wrong with your child, all the ways they are delayed, unprepared, falling behind, failing, struggling, unable, incapable, not smart enough. Because they are kind, good people they will sandwich all these negative things with positives like, "Your child is so cheerful! I love having your child in class! Your child is a hard worker and always smiling!" but it doesn't really matter how fancy and good the bread is, if you're putting it around a giant turd you've still got a shit sandwich.
As I'm sure you can imagine or maybe know from your own experience, eating that shit sandwich is hard. It reminds me of when we were in the NICU and doctors kept telling us all the things that were going to be wrong with James. Here our little boy had come back to us and in our ignorance we hoped and believed everything would be okay. So as they told us, "He'll likely be blind." "He will probably never be able to eat." "He will probably have cerebral palsy and it will be severe - he'll be strapped in a wheelchair." "He will likely have the brain development of an infant."what they were really doing was just taking him away from us again but now one bit at a time. We had to grieve the child we thought we had and the future we assumed he would have.
It's sort of the same at the IEP meetings, with each statement about what our kid cannot do they take away a bit of who we thought our child was and hoped for in their future. This is maybe even worse because of some kind of NICU wound, but also because back in the eighties and nineties when I was in school at my nice, good public schools filled with nice, good kids, special ed kids were Others. They weren't treated poorly necessarily but they didn't have friends. They were isolated in their own classrooms and we never really had anything to do with them. Or if they were in some regular classes they were seen as stupid and some of those kids were bullied. So yeah, they actually were treated poorly.
I don't want that for my kid. I want my child to enjoy school, to not be bullied or pitied or ignored. I don't want them to ever feel stupid. I don't want them isolated. I don't want them to struggle. I don't want them to suffer. I don't want them to feel worthless or not-good-enough. And teachers keep telling me that it's not as bad any more and I hope it's true. We'll see what junior high and high school are like.
This Wednesday we will have an IEP meeting for one of our kids and at it we will be modifying the education plan so there is more time in the special ed classroom and out of the gen ed class. There will be follow up conversations to previous conversations about all the things our child cannot do. I'm not happy about these things but I'm hoping that by tackling them head-on we can help our child lay the necessary foundation so later our kiddo won't struggle. I'm also grateful that understanding these things about our child has meant that we are parenting them differently and that will hopefully mean better things for this child.
I know that in real life - and not the one in my head made up of hopes and dreams and ideal situations - my children will all suffer. Good parenting isn't protecting my kids so they never fail or hurt, it's teaching them how to thrive and find blessings despite or even in the midst of those failings and pain. I know that. And I hope you understand that this isn't about having a precious snowflake of a child. This is about passionately loving my kid, wanting to do right by my child, and feeling like a complete failure, like I've lost the game before it's even been played and there's nothing I can do about it.
So there's that.
So there's that.
Prayers for you and your family, Bonnie. I have tears streaming down my face, which might actually help me today because when I yell for the fifth time that they DO IN FACT NEED CLEAN UNDERWEAR TODAY they might see my tears and be scared enough to actually go get dressed for school! I really appreciate your honesty and vulnerability and it is very clear from reading this that you care very deeply for your kids and that you are a faithful daughter of God.ReplyDelete
Praying for you! We have three on IEPs for various reasons; I know the delicate balance of our heart's desire to just make typical what is not and at the same time create a golden IEP that somehow garentees success...both desires are near impossible but still pull at us at times. We have had some excellent IEP teams and some rough ones, I pray that your team has your child's growth both academically and socially as priority over their budgets and that you all can creat a plan which will allow him to make great strides in whatever areas the struggle lies. Many hugs and cups of coffee as you prepare for Wednesday!ReplyDelete
Lots of love. We have an upcoming IEP conference with my oldest tomorrow - and I totally fear that shit sandwich too! She's a wonderful girl, that I love having in my class, but..........ReplyDelete
I'll pray for you, and ask that you pray for me! <3
We are totally in the middle of this right now. It's weird because a year ago our newborn was in the NICU and we terrified for him and had long term concerns. But he is fine. And at the same time our five year old just got hit with this diagnosed learning disability this past year, and another diagnosis which will probably screw with her learning even more a few weeks ago...with the suspicion there might be even more going on. And now we are wading through IEP waters and talking about what special attention she might need to overcome all of this. And this year that I thought would be spent wringing my hands over my son has become mostly about my daughter and what she can't do. And I know next year is going to be even worse. And I am going to this therapist and that evaluation, hearing some things that are just depressing and some things which I don't agree with. And I feel like her whole future is crumbling around me. But we were coming out of an evaluation a couple of weeks ago and I was holding back tears and thinking about everything awful that is coming...all the frustrations, all of the challenges we are going to have claw her through...and I realized that nothing, truly, has changed. She might have a new diagnosis or a challenge that has been given a name, but the same child that walked into that evaluation walked out. And screw it, they might be experts in these conditions but they are not experts of my child. I will advocate for her, fiercely. I will weigh their suggestions and meet with these doctors and therapists and we will pursue what will best help her. But, at the end of the day, I realized I felt like my child was becoming a stranger to me behind all of these labels, etc. And I realized I can't let that happen. I feel like they forget there is a person behind these challenges, and if the rest of the world is not that great at remembering that...in our home that will not be the case.ReplyDelete
Our NICU grad is younger than yours, so we haven’t had to face the school struggles just yet, but we had that same conversation with neonatologists when we had to decide, should our son be born at 22 weeks, would we or would we not opt to resuscitate. The blindness, the cerebral palsy, all of it and all I could reply to them through the tears was "he will still be our baby." So believe me, I get it. And it makes sense that that would come rushing back with IEP meetings coming up. It's like a grief cycle -grief, anger, exhaustionReplyDelete
Now as our son gets closer to kindergarten age we're cycling through the therapies: speech recently finished, at least for now, occupational therapy just began. It's hard not to compare him with typical children but one thing I know for sure about your little guy and mine-God really really wanted them to be here, and He used His awesome power to make that happen against tremendous odds. So in spite of the challenges and struggles they will have to face, He has very great things in store for them, And so, when it comes to advocating for your son and preparing him for what He has in store, God thought you were the perfect mom for the job.
My sister was in special ed and had ieps through all of her schooling. She was never part of the general education population, however the general education students that were aids in her special ed class treated her like one of the regular kids. They talked to her like she was a real person even though she is non verbal and non communicative. Its amazing how understanding and accepting kids can be of kids that are "different".ReplyDelete
You are doing a great job Bonnie. I am going through a similar situation with my oldest. Sometimes I just want to take her out of school and shelter her from the world, but then I feel like I can not provide the kind of structured environment that she needs. It breaks my heart to see her struggle. Hugs and prayers for you and your family.ReplyDelete
"This is about passionately loving my kid, wanting to do right by my child, and feeling like a complete failure, like I've lost the game before it's even been played and there's nothing I can do about it."ReplyDelete
Oh my. These words are exactly my feeling about my family. I was having a sob this morning over my struggles with my kids, and it is somehow so healing for me to have someone say just how it all feels.
Prayers for you and your family.
This made me cry! My sister has cerebral palsy and is my only sibling. My upbringing was much like yours except even I felt judged at times just for having a sister who was disabled (obviously she felt judged too, but often less keenly b/c of her disabilities, which at times was a blessing). I remember sitting through some of these meetings or seeing the after effects and just wanting a "normal" life. I wasn't raised Christian at all, so what that "normal life" meant was quite different than my perspective right now. But over time you see how true it is that it's the journey that matters, not so much the individual steps. It's who they become, not just what they learn. And as a Catholic this is all the more true. You are raising saints, and their math scores don't influence their holiness--it's how they (and you) try and respond and grow and learn (maybe life lessons more than math lessons)! I hope you can keep your chin up, because your response is teaching them how to respond and your cherishing of them might be a lesson to the educators you're dealing with too. I know you want the child to take school seriously, but on the other hand, it shouldn't be taken too seriously. We just read "My Path to Heaven" during Holy Week and talked a lot about how different people have very different paths to Heaven, but the one we need to choose is the one that is surest to get us there. This almost always means struggle of some sort, so the kids and I talked a lot about that and they loved studying the picture that went with that chapter. When something is hard now, we talk about where this might be on the path--how much it might matter or might not. It's as good for adults as it is for kids! I'll stop babbling now, but many prayers for you!ReplyDelete
Oh friend, I get it. I feel this so acutely every day- this fear that the older he gets, the meaner the other kids will get. The more they will notice his differences. That the closer they get to puberty, the more they will begin acting out towards him out of their own insecurity. The fears are so real, and no matter how much I remind myself about God's faithfulness, I worry. I wish I had some great spiritual exhortation for us both, but maybe it's just enough to say "you're not alone". Love you.ReplyDelete
Bonnie, thank you for sharing your heart so we know just how to pray for you. I don't have any good answers except to say that, DAMN, he is so blessed to have you as his mom. Honestly, having an advocate for you, one that fights for all the things until you can fight for them yourself is SO very important. Don't discount that. Lot of love from Texas.ReplyDelete
Bonnie, you are not alone. I am facing a similar situation with my daughter, and it is enough to break a mother's heart in two. I am a former special education teacher, turned stay at home mom. How I wish I could go back to my teaching days...I would be so much more compassionate with my students' parents. Not that I was cold or impersonal, just that I didn't understand the hurt of delivering g that shit sandwich the way I do now that I am a mom, and the one receiving the shit sandwich. I have no good words of advice. I struggle with the grief...grief for my daughter and her crosses, both now and in the future. And if I'm being honest, grief/resentment that it is so damn hard and not what I imagined for my family. Terrible, but there it is. I have grown in my devotion of our Sorrowful Mother, saying 7 Hail Marys each day to honor her tears, and that has provided grace, for certain. Thank you for this piece. I will add your sweet kiddo and your mother's heart to my intentions.ReplyDelete
Thank you for sharing. As a SPED teacher it is so valuable to me to hear your story. I'm sorry. I think there is a grieving process we go through in SPED. It is heartbreaking. Still, please believe we want to help. Parents are sometimes hurt deeply when the team discusses the child's situation. All in all, the process does help. Sometimes can all be very messy. Thank you.ReplyDelete
I used to be a special ed high school teacher and for half of the classes, my job was to go into regular ed classes and assist the special ed students. But mostly I just worked with whomever needed help and I don't think the kids knew who was special ed and who wasn't. There's a much bigger push for integration than there was when we were in school and I don't think the special ed kids are seen so much as "others". Also, as Unknown says above, we really do want to help; unfortunately, we are trained to be "hammers" looking for "nails" so we have a tendency to focus on needs versus strengths. I pray that Jesus will give you comfort and strength and will give the entire IEP team guidance.ReplyDelete
Thanks, Bonnie, for the window into your heart. And, gracious, what wonderful reader/commenters you have! - nancyoReplyDelete
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Oh, friend! My oldest used to have an IEP, my second still does, and I'm sure my soon to be born daughter will eventually need one, given the severity of my HG this time. This is so spot on!! Thank you for sharing your heart. You are not alone!ReplyDelete
Hi Bonnie and all other parents on this thread,ReplyDelete
I hear you. I'm a teacher and I do the best I can to make parents happy with their child's IEP and all the meetings that come with it. What suggestions would you give for teachers? I would hate to have a parent feel hurt or angry or dissatisfied.
I only want to speak for myself and the first thing I want to say is that overwhelmingly we have had positive experiences with in IEP meetings and the people there have done everything right. But I will say that when people are sitting there and uninterested or impatient it is upsetting. Again, speaking only for my family, we are getting news that is HARD to hear and affects our home life, routines, hopes, prayers, and vision for our future. This may be one meeting about one kid you have for one year but there is mourning and facing hard facts going on for the parents. The least the people at the table could do is understand and respect that. And when the empathize with us it is a true gift.Delete
And sorry for the typos!Delete