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Promise me.

I felt the earth tilt a little a my resolve crumbled around me.  Dizzy. Nauseous. Mad.

Most of all, sad. I had spent days preparing for this meeting. Knew the law well, knew I had rights. It all laid poached like once hopeful animals at my feet. I had nothing left to say. No fight. They won.

And it isn’t me that lost. It’s my daughter. My beautiful, three year old completely non-verbal daughter. Abby doesn’t even babble. Yet here they were cutting the time she would have in a language rich environment in more than half. Cutting speech services. Why? Because they could. Because the law let them. Because at the end of the day, they’ve met their bottom line and my daughter isn’t worth anything extra than the bare minimum. Their dollars are better spent on a child that excels than a child with Down syndrome and autism.

At least, that’s how it felt. That’s how it hurt.  I couldn’t hold back. My advocate skin had been too thin, the parent-the mother- was all that was left. I was reduced to a quivering lip that betrayed me. I broke down. I sobbed. And then I did something that I truly regret:

I apologized for the tears they caused.

I apologized for tears that showed the damage they had inflicted- like apologizing for the blood that spills from a bullet wound. I apologized.

I won’t ever do that again. I’m done apologizing for feeling hurt when people hurt me. I’m done holding back tears for the safety of my car or home. I’m done pretending everything is all right when everything is not. all. right.  My life is beyond hard. I can put any spin you’d like on that. I could finish this post with some resolve and some “everything happens for a reason” bullshit, but I won’t because it’s not honest. It’s not me. It’s not real to what I’m going through.

I could not publish this because I know damn well that the district reads my blog now. But I am going to publish this for the same reason I cried in front of them and for the same reason I will never  apologize for tears again:  TEARS ARE HONEST.

No more. No more crying in our cars after someone says horrible things to us in a grocery store. No more apologizing to the person who caused our tears. No more feeling like we are weak for loving our children so much that our emotions take over.  It’s in these times, in the times that we have the courage to break down, the courage to show how deeply we’ve been hurt, how deeply we care, it’s these times where we are our most brave.

Promise me, too, that you’ll stop holding back and apologizing for tears that were not your fault. Promise me that you’ll let people feel the full weight of their actions as they flow in tears down your face. Promise?

Promise me

27 thoughts on “Promise me.

  1. I am so sorry Lexi. And what you ask is something so hard for me to do. But I did do it at my last 2 IEP’s, and I promise I will try to do it even when it is hard. Showing people my feelings is the hardest thing for me to do. I only finally did it because I was so broken at that point. I am so sorry that Abby is not being given the worth and the service plan she deserves. It is not right. Hugs to you.

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  2. I’m sorry. This sucks. The preparation that you did, the reading, the seminar/workshop/whatever . . . you did every single thing that you could, and in the end they just get to shrug and say “We hear you, but no.” (If they bother to acknowledge that they hear you, instead of just talking over you dismissively.)

    I’ve been there, too. This is also where I can get frustrated with other SN parents, who say “I wouldn’t stand for that! I would fight more! Hire an advocate!” etc. Sometimes you can do every freaking thing, and if you end up with a decision-maker who doesn’t really care, it just doesn’t matter.

    When my nonverbal girl was in preschool, we lost several services, and let them just drop off. When her assistive tech evaluation through the preschool system became a joke, that’s the one thing that I seized upon—because communication is the single most important thing to me. That’s the one that I decided to pick up and run with myself, to figure out something for her and make it start happening at home, without their input, so that I was in control of it. She might not ever jog up a flight of stairs, but she will communicate well, if it kills me.

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  3. Ok – then I’m not apologizing that your post caused me to cry because I felt your frustration and sadness as a mom.

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  4. Damn. I totally do that. I apologize to people when they make me cry. I have never thought about that. You’re so right. I’ll stop doing that too.

    Lexi, I’m so sorry. Abby is worth so very, very much. I’m so sorry that the district and the law can’t see that.

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  5. I’ve lost many fights at those types of meeting, both as a parent and as a tutor or therapist advocating for a child/family. It is sad, but the most ridiculous thing of all is that school staff don’t realize that they are often hurting the district’s bottom line.

    Example: I wrote long reports and transcribed for hours what a 3 year old’s utterances were, to prove how disordered her speech was and how her verbal apraxia was affecting her (besides the ADHD). Nothing.

    I continued to write updates. She started a preschool, and staff started complaining re: her behavior and communication. Her family started her on fish oil, which seemed to help her speech, but by now she was over 50% delayed. In kindergarten her teacher said she was impossible to teach. The family worked with an advocate. She’s 6 now, and can speak in 3 word sentences. Sometimes they are complete and often there are speech and language errors: Me like cool. (School) the district is now paying for speech, physical therapy, occupational therapy and a self-contained classroom that she will need for many years to come.

    Research shows that early intervention results in lower costs and shorter treatments.

    At this point, saying, “I told you so” to that district is an empty consolation and it’s all so sad.

    As a parent, I was in the middle of my master’s in speech when I realized my child had feeding and speech issues.
    I did home therapy and he slowly improved.
    Find a therapist who will consult with you.
    Learn to be her therapist.
    Figure out which techniques work best.
    Give Abby 20 to 30 minutes of alone therapy time
    with you up to 3 times per day.
    My son was more verbal in warm water, so he had 3 baths
    per day. That was our therapy time.
    Once you know techniques that work then you
    can insist that they be used in school all day long.

    For one boy that meant access to index cards
    that he could grab and read to cue his own speech.
    “I want_____.”
    His parents took videos to IEP meetings showing
    the techniques in action and insisted all at the meeting
    watch them. Having techniques used all day long
    is more valuable than a 20 min speech session, sometimes.

    This summer I worked on spelling skills with him.
    He has Autism. His mom practiced the techniques and
    called a meeting in Sept. He is mainstreamed for
    Spelling and within 3 weeks earned a 100% on a test,
    Which he wrote himself! Last June he was in ABA classes
    all day long!

    With consultation, and guidance, become your
    child’s therapist. Give her therapy as much as you want.
    You have the most powerful not-so-secret ingredient: Love!

    Noelle

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  6. Beautifully written and courageous post. Our son is 33. Over the years I’ve discovered schools will let you down, people will let you down, the state will let you down, over and over. In the end it’s about you and your child. Fight as hard as you can and do all you can but know you’re a great parent and you deserve to be honest about all of it. I gave up pretending years ago. I love our son but that doesn’t mean it’s easy and I’m not apologizing for that. We do the best we can within our ‘reality’. We laugh, we cry, we celebrate every small victory and mourn over what cannot be and in the midst of it all we find joy in the everyday of life.

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  7. I gotta say….I am a mom of an autistic son. Before that I taught special ed (early childhood). There is nothing that the school can do for her that you can’t do for her. I’m assuming that she is getting SOME time in a school setting. I know that you’ve heard this before, but….three year olds should be PLAYING. If you feel she should be in a language rich environment, make one for her. Find out where other kids her age are hanging out and go there. Sitting in school all day is not going to be more beneficial than anything you can do with her at home. You will have guidance from her speech therapist and teacher. But you can put in the man hours yourself.
    (I’m sure that this is not a response you want to read. Sorry! Just throwing out another perspective.)

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  8. I truly hope that your daughter’s school system sees my reply. I live in Massachusetts. Near Boston, where all of the top-notch hospitals and research facilities are located. Do a little research on Dr. Brian Skotko and Dr. Christopher McDougle. Those are the physicians that my son with a dual diagnosis of Down syndrome and autism sees.

    Hey, State of Washington, is your goal to remain in the Dark Ages? Or are you willing to compete with Boston? It seems to me like you want to remain in the “Dark Ages”, because it doesn’t cause any waves, doesn’t “ruffle any feathers”. Or do you want to be progressive and find your own “Dr. Skotko’s” and “Dr. McDougle’s”? Don’t you want to be better than Boston? No? Well then your government has proven itself to be full of scared, uneducated, uncaring individuals who will ONLY provide adequate services for special needs children when your “Great State” is embarassed enough to do so. So Seattle–congratulations. You can survive on the “legend of Kurt Cobain” and “the awesomness of Starbucks coffee”. Otherwise, what does your state stand for? Want to play with the “Big Boys”? Get your act together, call Massachusetts and see what YOU SHOULD BE providing your students with special needs. But I have a feeling that you’re “content” with being a second-rate state; living off the royalties of coffee and dead celebrities. So now your state is seeing an insurgence of children with Special Needs. And yet, you’re too ill-equipped to provide these children with the special education and skills they require to become productive members of society. Or, State of Washington, would you prefer to have a population of children who depend on state assistance?

    The ball’s in your court, Washington. You have the power to make things easier on yourself. Because, in the long-run, if a child with Down syndrome, autism, or some other chromosomal abnormality is looking for assistance . . . Washington State may be footing the bill for the rest of their lives. Why not provide them with an IMMENSE amount of services while they’re still children? It will only save your state a SIGNIFICANT amount of money in the very near future. Bottom line–invest in disabled children NOW, or wait a few years when the astromonical cost of assisting a disabled ADULT smacks you across the face. “Washington State’s Pocket Change” or “Washington State’s head on a platter”. Which would you prefer?–Written by a woman from Massachusetts who has a child with a dual diagnosis of Down syndrome AND autism

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  9. I promise too!

    You are SO right. My son has been diagnosed with juvenile on set bipolar disorder at the age of 8. Shortly after his diagnosis, he was suspended (yes, they suspended an 8 year old) because he had a bipolar rage caused by the school administration. THEY failed to follow his safety plan (formed in conjunction with his psychiatrist), and then punished my son for it. I too, couldn’t hold on any longer, when sitting in the principal’s office listening to them condemn my son for not giving them an explanation other than, “I have bipolar disorder”. As I openly weeped out of sadness, frustration and a whole host of other emotions, luckily my son’s father stepped up and explained to them that an 8 year old suffering from a psychiatric illness that most adults cant handle probably didn’t have any other explanation for them other than “I have bipolar”. I too found myself apologizing for the hurt THEY caused to both my son and myself. NEVER AGAIN! YOU ARE SO RIGHT!!!!

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  10. I cry and apologize to them, too. I so get it. And I will promise to work hard to not.do it anymore.

    I am sorry that Abby isn’t getting the services she deserves. ((Hugs))

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  11. I too have a daughter with Down syndrome and autism. I too, heard all that crap about “language rich environment” to which I counter, putting my daughter in the room with a television blaring would be a “language rich environment” so I’m not going for that. She too got way too few services and supports until we finally got tired of teachers and aides abusing her, hired a Special ed attorney, and spent about 2 1/2 years fighting to get her needs met. She is in a specialized school that puts education first, costs the district a fortune (about $1800 a week) and she is doing much much better! I believe had her needs been met from the beginning this level of care would never have been needed. Unfortunately, there are too many districts that would rather spend their Special education funds fighting against doing what our kids need.

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  12. From what you describe, it’s very unlikely that they have the law on their side. On its face, they appear to be denying FAPE under Section 504, because speech is a major life activity and her disability interferes with learning. So you could go for a Section 504 hearing.

    I’ve filed about 10 of those, and the district has blinked each time, except one that the district decided to fight last summer. We went three days, got a lot of free discovery and some training, and even a finding that they discriminated. And we got the public records today revealing that they paid $8000 to the hearing officer and another $95000 to the attorney, who actually did a fairly crappy job. Over $100K to fight a fairly small discrimination claim, and there others like it if they want.

    This is the most fanatical district I’ve run into, but they now know there’s a lot more of this for them if they keep it up. 504 hearings are powerful pressure against recalcitrant districts.

    They probably also impeded parent participation in the IEP, or committed other procedural violations that denied educational opportunity or “caused a deprivation of educational benefits.” Such procedural violations in themselves constitute denial of FAPE, without even looking at whether what was offered afforded educational progress. So an IDEA due process hearing on simple issues is probably possible.

    We can talk about it more if you want. On its face, your story doesn’t sound like the district can possibly be in compliance.

    Another thing. Reasoning and begging in an IEP meeting isn’t fighting. Reasoning is necessary but not sufficient. Fighting is responding to their bad behavior with blows that hurt: compliance complaints, due process complaints, selective or total revocation of consent, and such like that inflict punishment. Fighting is not always called for, but if it is, that’s what fighting looks like. It can be done so that it doesn’t cost you much money, but so that it costs them lots of money and political embarrassment.

    And you have to get over the idea that these institutions care about your kid. They don’t. You have to be reasonable, giving them every reason to work with you and none to fight to the death. But apart from the fear of cold iron, their ears often will not open.

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  13. I know things are incredibly hard. I know. We’ve spent the last five years clawing, scratching and bleeding for any small scrap of service they would give to Ted and AJ. Yesterday, I talked to a lawyer. I’m done. No more giving them the benefit of the doubt. No more begging. No more apologizing. Our kids deserve more than the shit the districts try to pass off on us.

    Also, hugs, love and eVodka, my Friend.

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  14. I Promise! Maybe I’ll even try it with my former spouse-oh the possibilities are endless with when to be honest! I tend to”freeze” ….hmmmm….. I’ve thought about your blog about “not smiling all the time “to-makes me think. God be with you and your family-and my love and thoughts.

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  15. I have a rule of thumb for this kind of meeting:

    SIGN NOTHING.

    You want to reduce services for my kid, think you can get away with “bare minimum” instead of “appropriate”? Think those two words can be interchanged? Try “HELL NO.” Then you can discuss it with my child’s advocate and lawyer, because until then, I SIGN NOTHING.

    And if I don’t sign, nothing changes. Period.

    And by the way, I love you. You are awesome.

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  16. Please, please, please, if you know that the IEP meeting will be contentious because either the district representatives are nasty and/or because they will be fighting you on every service that your child needs, do yourself and your child a favor and do NOT go to the meeting alone. You will L-O-S-E!

    It doesn’t matter how much Wrightslaw.com information you read, how many government web sites you visit to inform yourself, or how many books you buy to educate yourself on your rights. The reasons for this are that: 1) the district knows you are tired, exhausted and emotionally worn out; 2) they know that even if you are very good at advocating, if there is a hearing and you represent your child, you cannot collect attorney’s fees. Therefore, the district has no concern about having to shell out a lot of cash on the parents’ attorney’s fees in the event that the parent prevails. Bottom line: they have NO incentive to provide your child with the program he needs. Even if YOU are an attorney, if things with the district have reached the point of disintegration, there is an impasse, or the district is violating the child’s rights (even causing harm to the child by not providing FAPE because regression has occurred or no gain has been made) — you NEED an attorney!

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  17. Lexi, you amaze me. Your writing has inspired me and put words to so many similar feelings I and others have had. Thank you.

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