does this mom of a special needs child need a prescription for this new motherhood?

I’m not very good at this special-needs-mom thing, this new motherhood. I’m nearly always frazzled. I can’t think of a moment I haven’t felt overwhelmed in over three or four years. I often have a short fuse. Sometimes just thinking of my son’s sweet face will bring a flood of tears. I am overcome with helplessness every time I think about his experience at school. I am always, always worrying about something. I am seemingly a textbook definition of depression and anxiety disorder and I don’t remember being so before my son started having problems in school. 


Two weeks ago I was so worried about how much the school is failing Luke, and I wasn’t affecting any change despite trying, that I was nearing a full-blown panic attack. 


In the low darkness of that week, I actually told my mom I wasn’t sure I could be Luke’s parent without taking an antidepressant. As soon as I heard myself say it, I was stunned. I thought I was joking but quickly realized there was a seriousness to my comment. 


I can’t see a life of joy in all of this chaos. I feel overwhelmed, incapable, helpless and unappreciated, and it affects my family. How can our family be happy when one of our members is struggling? When I’m struggling to help the struggling? 


When I realized I was perceiving my world as spinning out of control, I called on the help of my ADHD mommas. I sent the following plea in a very long email:

Ok. I feel weak for doing this. But I need help. I can’t shake this ADHD funk. I can’t seem to find a way out of this dark hole. Hoping you ladies can give me a hand and help me figure out where to go next.

Here’s how I fell over the edge:

Two weeks ago we finally had Luke’s first IEP meeting to design his IEP. I have been fighting for two years to get him special ed inclusion for his writing disability and I finally did. I was pleased but still very nervous about them giving him the help he needs. He has one goal: to get 80% on 3 out of 5 writing assessments. I am guessing he’s at 30-40% at best so this is not going to be an easy goal. They stated in the IEP that “Luke’s writing difficulties affect ALL academics.” And yet, there are very, very few accommodations in the IEP, and nothing but chewing gum and testing accommodations for all subjects other than writing, even though we established that the writing affects all academics!

    • 30 minutes a day in resource in a small group (5) kids to work on handwriting. At first he was not using a computer for that after he had been in the classroom, but I’ll get to that in a minute.

 

  • 3 sessions with the school OT per QUARTER (9 weeks)
  • Testing accommodations including minimal distraction, extended time, and marking in the test booklet.
  • Allowed to chew gum anytime

 

 


That’s ALL!!!!!

So I was heartbroken. I spoke for a good 30 minutes in the IEP meeting about assistive technology. No one spoke up about any possibility. We talked about how his classroom teacher had spoken to everyone in the school trying to get a computer for Luke with no luck. There isn’t any wireless at the school. There’s one network plug in each classroom and all the software in the school is accessed via network, nothing lives on the computers. All the classrooms are set up with a new netbook (stimulus funds) for the teacher to run projector and other things. The kids are not allowed to touch that computer. And, in order to run them, the teacher needs to use that one network plug. His teacher has been giving him network access on the old desktop in the room during writing for a while now. He uses MS Word for writing assignments. But that hasn’t helped him to stay on task nor has it helped him with written expression – it only takes away the handwriting issue.

So I left the meeting and started searching for grants or scholarships for assistive technology with no luck. After two days, and a note on Wrightslaw, I looked on our County Education site and discovered the Asst Dir of Special Ed heads assistive technology. How a classroom teacher, two resource teachers, a school psych, and a school OT didn’t know about it is beyond me. It turns out that the OT did know because it’s her job to present a child’s “case” to the AT committee but I think she had already stepped out of the meeting by then because she was late getting there and then she had a kid waiting for her, so she left during the meeting.

So I contacted the oversee-er of AT and she said they’d present him at the next AT meeting (last Monday) and let me know what they decide. I asked twice if I could attend and was told there’s no need (uh, yes there was!). I offered to help and was ignored.

Finally on Thursday, I received an email that they installed Kidspiration, Write Out Loud and Co:Writer on the computer in the resource room for Luke to use during that 30 minutes of writing each day. These are exactly the programs I wanted him to have for the subject of writing. They will trial it for 2 months and then determine if it’s helping and where to go from there. (This is now a new woman heading his AT “case” – a Speech Pathologist at the special school for the “intellectually disabled” across town). I immediately responded in horror. I reminded everyone that Luke’s writing disability affects “all academics” and that he’s only in resource 30 minutes a day. I had also just opened his report card and then cried (for 4 days now). All his grades dropped except reading (A) and writing (because there’s nothing lower to drop to if you’re already failing). All of his behavior marks, every single one (like 15-20) dropped as well. I was crushed. Luke was crushed. And then I became pissed!

How can I put so much time and effort into this for it to be getting worse? How can he now have an IEP but things are getting worse? How are things worse and we are now providing LESS accommodations and LESS help? What the hell sense does any of this make? I am absolutely going out of my mind. I’ve had countless email interactions with many of these people this week and they are becoming heated and terse and the AT lady is trying to put me in my place. I am so disillusioned and so very, very sad.

Every time I think about it there are tears. Every time I talk about it I cry until I can’t talk anymore. I try to resolve to come up with a new plan and put that energy into making something happen.

But I don’t know where to go from here. Every plan I come up with requires money I don’t have and/or other resources I don’t have. I thought again about homeschool, but it just isn’t right for us. I don’t feel capable/competent. It would still require a lot of money because I’d have to hire people privately to help him with his writing disability because I have researched and have no idea how to help him with it. I would have to purchase materials and curriculum. I would have to pay for lots of extra-curricular kinds of classes because we don’t have a social circle. Without doing all of that, Luke and I would be trapped in the house together 24/7. Oh, and there’s the matter of the fact that I have to work and I can’t take Luke with me to show property when clients call, nor can I afford a “babysitter” every time. Homeschool just isn’t feasible for us.

So then I considered private school. Sure, we don’t have $6,000-7,000 a year. But what if we could get some scholarship money? Maybe we wouldn’t have to pay the full tuition. There are two private schools that look like just what Luke needs: small classes (10-12 students), experiential learning, discipline policies that are geared to helping a child NOT just punishment, etc. One (a 40 minute drive from where we’ll be moving) is on 600 acres and is a summer camp in the summer but they do 50% of school the rest of the year outdoors. It’s my favorite. Then I have to consider that there is no IEP and no Federal Laws to say they have to help him in any way. My theory is that these schools are structured appropriately for him to succeed, perfect for his (ADHD) learning style. But will they provide services for the writing disability? Will they provide accommodations? Will they allow him to have a computer for class work? Will they even let him in after we pay the $75 application fee?

Of course, there’s a fantastic charter school that would be near perfection for him, and it’s totally free. However, it’s near impossible to get into the charter schools here. There’s only one 4th grade class. There might be 1-2 openings in that class, if any at all. There will be 50+ applications in the lottery and the only chance is luck. And now that they are speculating loosing 400+ education jobs in our COUNTY alone so the applications for the charter school lotteries will be through the roof, maybe 200 or more per class that only has 1-2 openings if any. I certainly can’t count on him getting into that school!

So then I think, well, I’m going to have to make it work in public school. But when they cut those 400 teachers, the class sizes will jump dramatically. Luke already can’t stay on task and do any work in the classroom because there are 22 kids and only one adult. So even if I get him the AT he needs, etc, etc, he will still be dealing with a class of likely 30+ kids. Holy cow! That can’t possibly work for him when the current situation is so bad.

I have pushed with our AT coordinator (the woman I’ve never met or spoken to), but she is now pushing back and I don’t think I will make any more progress with her.

Do I meet with the school principle? It seems her hands are tied when it comes to Special Education as well. Do I call the County Spec Ed department and try to meet with them to figure out how to help him? I don’t want the two ladies in resource to feel like I’m saying they aren’t capable or aren’t doing their jobs. They are doing their best with the resources, knowledge and tools they are given, which isn’t much.

Do I bite the bullet and buy him the computer and the software he needs and send it to school everyday? If I do that, I will still have to get them to send in all of the worksheets home for me to scan and turn into forms (I’ve been doing this with a software trial on all the work he’s been bringing home incomplete on my computer and it’s working well).

I guess it all boils down to the fact that I am paralyzed with fear of making the wrong decision. All seems wrong so far. And the money for private school is very frightening. He needs to get into the great charter school, but I am telling myself it’s not possible, since it’s near impossible.

If you made it through all of that, thanks! I know it’s a lot. I just really need your help and outside perspective. I’m drowning in the muck and emotion of it all.

And my mommas came through for me. The majority said, “Hey lady, slow down!” I have to admit, at first that irritated me. Was that all? Easier said than done!  But I soon realized that really was what I needed to do. I can’t fix everything all at once and I’m not any good to anyone if I am so worked up. 


So I slowed down, stepped back, and formulated a plan. 

  1. I will attend the open houses for the two private schools on my radar and apply for admittance and scholarships. 
  2. I’ve already submitted him for the lottery for placement at the super-awesome charter school. I’ve also been told they don’t anticipate any openings in fourth grade next year.
  3. I am working on a chart I found on LD.org to organize my concerns about school-related problems and I’m talking with Luke’s therapist about a plan of action. I am inquiring with some education advocates to determine how they can help and if I can afford their help to further my fight with the school system to get Luke the technology and accommodations he needs to find true success in school. 
  4. I have stopped emailing everyone on the IEP Team and Luke’s assistive technology case manager multiple times a day. Since some began ignoring my frantic messages, it seemed logical. Once I am super organized and have outside professional opinions about what Luke needs in school, I’ll get back to fighting working with them. 
I’ve taken a figurative “chill pill” but I am still wondering if I need the pharmaceutical version for my family and I to survive this struggle, to meet the true needs of our special needs child. I want us to live a life of joy. 

COVER3D_400sq_bestsellAward-Winning Blogger. Freelance Writer. Author. Warrior Mom.
A self-described “veteran” parent of a son with ADHD, Penny Williams is the author of the Amazon best-seller about her parenthood in the trenches, Boy Without Instructions: Surviving the Learning Curve of Parenting a Child with ADHD. She is also the creator of the award-winning website, {a mom’s view of ADHD}, a frequent contributor on parenting a child with ADHD for ADDitude Magazine and other parenting and special needs publications, and co-founder of the annual Happy Mama Conference & Retreat, a weekend away for moms of kids with neurobehavioral disorders. Look for her second book, What to Expect When You’re Not Expecting ADHD, in late 2014. Follow Penny at http://BoyWithoutInstructions.com.

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adhd and school, NEWLY DIAGNOSED, parenting/FAMILY, Penny Williams ·

About the author

COVER3D_400sq_bestsellAward-Winning Blogger. Freelance Writer. Author. Warrior Mom. A self-described “veteran” parent of a son with ADHD, Penny Williams is the author of the Amazon best-seller about her parenthood in the trenches, Boy Without Instructions: Surviving the Learning Curve of Parenting a Child with ADHD. She is also the creator of the award-winning website, {a mom's view of ADHD}, a frequent contributor on parenting a child with ADHD for ADDitude Magazine and other parenting and special needs publications, and co-founder of the annual Happy Mama Conference & Retreat, a weekend away for moms of kids with neurobehavioral disorders. Look for her second book, What to Expect When You’re Not Expecting ADHD, in late 2014. Follow Penny at http://BoyWithoutInstructions.com.

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The "ADHD Mommas" are not medical or mental health professionals, nor an ADHD coach. Any opinions shared here are just that, opinions. I, and the other "ADHD Mommas," are sharing our experiences with our own ADHD children. Please do not re-post or publish any content or photos without a link back to {a mom's view of ADHD}. Have the courtesy to give credit where credit is due. Copyright protected. All rights reserved.

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