Yet Another Brain Dump/Freak Out

I am in the throes of a panic attack. Mostly because I am drowning. Drowning in my self-made lake of work and responsibilities, yes, but also drowning in fear and apprehension about Jack’s upcoming IEP meeting. Upcoming, as in, coming up on Monday at the crack of the damn dawn.

You all know I’ve been struggling with the decision of whether or not to send Jack to kindergarten. I’ve also been struggling with the decision of where to send him if not to kindergarten. And what services I should demand if I do send him to kindergarten. And how to pay for whatever the school district won’t.

While I’ve been visiting schools and asking questions and mulling this all over and turning it over and over in my head, I realized today that Monday is coming fast. I need to figure some shit out and I need to figure it out fast. And I realized how really un-goddamn-prepared for this meeting I am.

I also realized how unprepared I am to know what Jack needs. Christ, I don’t know anything about autism. I mean, I guess I know more than the average person, but compared to all of you other ladies out there, I don’t know shit. I’m learning. And I’m trying to learn more, but I don’t know enough.

I don’t know enough about autism to know what Jack needs. And I don’t know enough about the public school system or IEPs to get him what he needs. And I wish I had a fucking crystal ball that could tell me the things that would help him the most, because I would make them happen, no matter what, but as far as I know, no such crystal ball exists.

And I’ve been worrying that I haven’t been putting enough of my focus on Jack. That I’ve been jauntily living the life of a mom and wife and part-time worker and entrepreneur when I should really just be focusing on being a special needs parent.

I’ve been doing some thinking about this lately, about what it means to be a special needs mom. Even without this IEP breathing down my neck, I have so much on my plate, and I’ve started to wonder if that’s okay.

Is it okay to spend so much time blogging? I love it and it makes me happy, but maybe I should be spending that time learning about Jack. Is it okay to be trying to start a videography business? It’s fun and fulfilling and creative, but it’s time-consuming and expensive. (Hopefully not expensive forever…) Shouldn’t I spend that time and money on Jack? Isn’t he more important?

When I finally get my first chance all day to sit down at 3:30 or 4 in the afternoon and I just really want to do a crossword puzzle and decompress for a few minutes, but that time coincides with Jack’s arrival home from school, shouldn’t I really be utilizing that time for him? (Or, God forbid, one of my other kids?) Shouldn’t I be strong enough to put my puzzle down, hunker down on the floor, and play with my children?

The struggle to find a balance between self and child is hard enough with “typical” kids. What does a special needs child do to that balance? Especially when there are two other children in the mix?

Usually I think I’m a good mom for Jack. But there are days that I think I am not the best mom for Jack. Today is one of those days.

34 thoughts on “Yet Another Brain Dump/Freak Out

  1. Hey! Not so fast there. You are devoting the time and thought to Jack. It’s so hard being a mother and pulled in so many directions. Neglecting your own sanity and need for decompression would ultimately be a bad thing for everyone in your family.

    (hug)

  2. You can’t ignore your own needs completely–decompression is a necessity. You are doing all you can for Jack I am sure, and learning everything is going to take time. I understand fully the stress that comes from being pulled in so many directions–I posted on the same feelings today. I wish I could help, but the best I can do is wish you luck and offer all the support I can give via the internet. Hugs to you!

  3. Not to minimize what you are going through at all (opposite, in fact!)…welcome to the club! We’ve all been there and like to revisit it every so often. THe only problem is that the air is kinda thin and so we forget to breathe. Yes, in and out, sloooowly.

    IEP? No problem. It can be changed as you learn more about what Jack needs, what works best, etc. It’s a PITA sometimes but it is a flexible document.

    You ARE the best mother for Jack —for ALL your kids. Perfect? No. The BEST? Yes. It’s a journey, my dear. Kind of like going to a new place and discovering some of the funky local flavor when you get there instead of using the guide book…you’ll be fine. Really.

    You still need to find as much balance as possible. And, hey, just bc we don’t write about those moments w/the crossword puzzle (or whatever) doesn’t mean we don’t have them! NO ONE can be “on” 24/7. And that has to be okay.

    And, um, last I checked, you do have a husband who is a good partner…the two of you will learn as you go and share the load. May not always look 50-50; you’ll each find your strengths.

    You still breathing?? ;-) XOXOXO

  4. Taking care of yourself is absolutely essential to your being the best parent you can be – both for Jack and your other boys. If taking care of yourself involves creative endeavors (such as a videography business or a crossword puzzle), those probably need to stay. A couple years ago I was trying to do it all (school half-time, working 30+hrs/week, SAHM) and I wasn’t getting enough sleep. This results in me being a cranky bitch. My son didn’t need his mother yelling at him when he took too long to put his shoes on. I finally rearranged my life (basically, graduated and got a FT job) that allows more sleep and makes me a better mother, even if I spend less time with him. Don’t worry about the time; worry about the quality. 30mins of half-assed legos is worse than 15mins of awesome full-battle lego play.

  5. I want to say something to comfort and reassure you, to give you whatever kind of a push you need to get through that IEP and secure the services Jack needs.

    Maybe I can just offer you this: nothing that happens on Monday has to be the final word. If you find, as time goes on, that something isn’t working, that the mix of services aren’t ideal, you can make adjustments, call another meeting, change what isn’t right.

    And, trust yourself. You know your son. I’ll be thinking of you…

  6. You just wrote what I feel so very often. Why do I take the time to read other people’s blogs about their kids when I really should be cleaning my house or – – hey, how about playing with my kids or researching how best to support my child who is hard of hearing? I think I want to tell you not to feel guilty, but if I can’t follow that advice, how can I ask you to? I want to tell you that you are a “good enough” parent, but asking you to believe that is something quite different I suppose. Good luck to all of us struggling with this feeling.

  7. don’t be so hard on yourself. if you spend every minute devoted to one thing, you will lose yourself. your son needs you to be more than just a mom, he needs you to be that entrepuner (sp) and a blogger, b/c that is what makes you work. if you take that away he won’t have the best mom. hang in there. you are never going to feel 100% prepared. how could you, it is a mystery to science, you are not going to have it all figured out. one step at a time.

  8. You’re a great mom to all your guys. Never doubt it for a minute. And those minutes for yourself? Don’t neglect them. Trust me on this.

    For prepping for the IEP, I recommend a good solid read of “Emotions to Advocacy”, setting your records in order, then sitting down with your husband and talking about Jack. Who he is. What you think he ought to be doing, what skills he ought to have and doesn’t. What skills he does have, and the strengths that will help. We usually put together a powerpoint about Joey: Who Joey Is, Our Longterm Goals for Joey, Joey’s Strengths, Joey’s Weaknesses, Goals We Want, Goals Our Other Professionals Want. I can send last year’s over to you if you want for a peek (and if you like, to just plug in your own kids’ info and pics).

    I always say you want as much speech and OT as you can get. We get 60 minutes of speech and 45 of OT, and hon, it ain’t enough. I give him an extra 45 of speech and 60-120 of OT, plus the 120 of ABA, the music lesson, and anything else I can think of, and I’m still trolling for more speech and OT. Of all the things we’ve done, its the speech and OT that have made the hugest difference here.

    ***HUGS***

  9. Chick, listen to me.

    You know Jack.

    That is all you need to know.

    The school stuff, yeah you are going to have to learn to fight with a smile on your face and feed the bastards honey while they are crapping in your handbag, but that will come with time.

    You NEED you time. Take it from someone who breathed Autism for years and then didn’t know how to slow down, how to breathe, how to take some time to live. You do your child a disservice if you are just concentrating on the disability all the time.

    You know Jack babe, give yourself some credit OK?

    Big smootches to one of my favourite girls.

    <3

  10. I agree with all these comments. Give yourself a break! It’s hard enough learning to parent any child. None of us know what we’re doing which is why we all read blogs all day….hmmmmm….. :-) You’re doing a great job for your kids and the fact that you are taking so much time to think about Jack’s needs to incredible. You are the BEST mom for Jack and all your kids.

  11. Hi Stimey. I once read a book by Gordon MacKenzie called “Orbiting the Giant Hairball”. Very funny and uplifting book about always feeling like you need to be producing. One thing he said that has stuck with me is that if you have a cow and keep milking and milking her without any downtime for her to graze on some grass or just chill out, you’ll get very little milk. And crappy milk at that.

    So now whenever I feel that guilt coming on about how I “should” be creating, doing, making…blah, blah, blah…I just stop and think about how much better my creativity etc will be if I can just chill out. Rejuvinate.

    So heck. If crossword puzzles and blogging are fun (which means you look up and can’t believe where the time went) then embrace those things. They are in effect making you a better mom, partner, business woman etc. Really. -Monica

  12. Don’t be so hard on yourself. You have been Jack’s biggest supporter, have fought to get him the help he needs. You are an amazing mom. We all definitely have our bad days where we question ourselves, so I hope you woke up today confident in yourself again!

  13. I have totally been there – even with doing this a few times, I still totally stress out over all this stuff. Are you deciding whether to send him this year versus waiting a year or deciding what grade to start him in?

    You do not have to sign your agreement to any placement decisions at the meeting – just go and talk about what he needs and what he should work on and how they want to do that and then tell them you need to read it over again and think about your questions. You are ultimately the one in charge.

    DO NOT let them pressure you to sign off on everything that day! And take somebody with you, anybody, who can take notes for you at the very least (and remind you that you weren’t going to sign anything). Just let the school know they are coming. I’ve posted a lot about kindergarten the last few weeks, and feel free to email me if you want to wheresthebox @ gmail.com.

  14. OK BREATHE S–L–O–W–L–Y.

    The hardest part for me was realizing my child is not a project, meaning, I don’t study or work real hard, put all of my energy and knowledge into it and then boom, it’s all done, on to the next project.

    You have to pick your battles, slowly emerge yourself. You are not going to instantly know EVERYTHING there is to know about Jack or Autism or IEPs. No matter how hard you study or research or whatever, you will not know all there is to know. Ever. AND THAT IS OK! Each day, each week, each month, each year, you will learn more, you will change your mind, you will backtrack, you will feel helpless, you will feel like super woman…

    But most importantly, this statement you made: “And I’ve been worrying that I haven’t been putting enough of my focus on Jack. That I’ve been jauntily living the life of a mom and wife and part-time worker and entrepreneur when I should really just be focusing on being a special needs parent.” There are definitely things you can cut out and you will as priorities change… BUT, and this is a big BUT, Jack doesn’t need a special needs parent, he needs YOU YOU YOU. And you are a wife, mother (of more than one child), a volunteer, A PERSON. I am a big believer that what my children are surrounded by (like family) matters a lot more than how many hours of therapy they get.

    There is no finish line, no deadline for Jack. His life is fluid, so don’t feel pressure to have something done at a certain time or a certain way. As far as IEPs go, pick your priorities, and if the rest works out, it’s gravy. You just keep building them and building them and building them… and in case I forgot to say it elsewhere in my ramblings, you don’t need to know more than the basics about autism…what you need to know about is JACK. Go through the evaluations and determine what strengths and deficits he has and go from there. Don’t let people make you feel you are not doing enough for Jack slow happy progress is so much better than quick “institutional-like” progress… not sure if I’m making sense, but you’ve read my blog here and there, so you know my feelings on disability, too much therapy, etc.

  15. Deep breaths, woman! As others have already said, his IEP is not written on stone tablets. There’s nothing saying that you can’t change course mid-stream. And you can’t expect yourself to be an expert on autism. You are just learning this stuff. But you ARE an expert on Jack – and you are the ONLY one of those.

    And I have defintely been in the place where spend all my time researching, therapizing and finding experts on my kid’s special needs, but it’s so important to just let the kid be a kid. And let you just be a mom too. That stuff is important, but in doses and mixed with lots of normal family life. Don’t regret any of those moments. Those are every bit as important to his development as the other stuff.

    And summer is coming. Tie a knot and hang on. The craziness will settle down soon! (And if you are going to give up some things, give up the things that suck your energy (besides the kids, of course), not the ones that give you energy – i.e. blogging! Yes, a shamelessly selfish plea.)

  16. I hear ya. I’m in much the same boat. How much of myself am I willing to give up for my sons? One has ADHD/SPD and is in OT. The other has a speech delay and is in speech therapy, off for the summer. I could be doing more for them, but at what cost? What cost to my sanity, my very self? And I get angry about it. Yesterday was one of those days. Our poor therapist…I practically ripped off her head, grabbed her tonsils, and fed them back to her. Yeah, I’m so proud. I guess I just have to realize that I can only do what I can do. It’s tough, and it sucks, and if I give up anymore of myself I’m not doing anyone any good. Good luck to you!

  17. The IEP can be changed. It’s a working document. AND you don’t have to sign it. The meeting can be tabled.

    It is so important to take time for yourself. It makes us all a better parent.

    Jack is going to be ok. Really. Over the summer you’ll know what is best for him. One day you’ll wake up feeling comfortable with either sending him or not.

    Just see what the county has to offer if he goes to kindergarten or not and think about it over the summer (or for a few weeks).

  18. Oh, woman, I think we all have these days. But I think you are a better parent if you take care of your own sanity.

    Remember you’re the only mom Jack knows, so to him you’ll always be the best.

  19. There’s not much I can add that everyone else hasn’t already said in these comments, really. But I totally feel for you. I vividly remember being in the same boat when my little guy was newly diagnosed and headed for kindergarten. It’ll be okay.

    I HIGHLY advise bringing in a typed-up list for yourself of Jack’s issues and needs. Nothing fancy — just bullet points. It will help guide you through the meeting and ensure you don’t forget anything. It’ll serve as your security blanket, and it also shows the folks in the meeting that you are on your game. Feel (and show) your confidence in the fact that you know Jack best.

    My other big piece of advice is to always follow up after the meeting IN WRITING. I usually write something that is ostensibly a thank-you but that also spells out some key points that I want on the record. (“As we discussed, it is important that Jack gets ____ while still taking part in ____” or whatever. A paper trail is your best friend.

    Finally — We all have our dark moments, esp. around IEP time. But I know that I am still my son’s best and most important teacher; that his big brother is the best speech and play therapist he ever had; and that a happy, home with a balanced mom benefits everyone who lives there. I am positive the same is true at your house. Jack’s a lucky little dude.

    You can do this. And you will learn from the process. It’ll be okay. I’ll be thinking of you on Monday.

  20. The very fact that you are analyzing and thinking critically about the way you parent Jack clearly demonstrates that you are the best parent for him. A little self-doubt is natural, IMHO, but don’t let it get the better of you.

  21. I’ve just gotten a chance to read your post about Jack. I work as an ABA therapist for autistic children and I know how difficult this decision is. Don’t push it. GIve yourself time to learn all you can about what is offered before making a decision. I’m sure whatever you do will be the right thing. Also as other people have said, IEP’s can be changed, so even if you want more services for Jack than he might need right now, they can be taken off. After all, the ultimate goal is mainstreaming. With Aspergers, mainstreaming is a great goal and I know several kids who are doing great.

    Remember to take care of you and know that there are a lot of people how here for you to lean on. Let me (and the rest of us) know if there is anything that we can do for you. I’m always willing to help.

  22. Oh dear, I have too many of those days too, when nothing seems good enough and everything seems out of whack.

    In my limited experience of such matters I can say with a certain degree of confidence that down time at the end of your work day and Jack school day means that it’s probably just fine for you all to ‘veg out’ [not sure if that's an American term or an English term! - must be tired]

    When mine arrive home they just want to do diddly squat after a long hard day at school.

    Thank goodness for weekends.
    Best wishes

  23. You are the best mother for all your boys and blogging? your business? they make you an even better one. It’s certainly easy to feel guilty especially when our kids’ needs seem to overwhelm us. Hang in there. You will do great on Monday.

  24. Hey there! I so wanted to talk to you more today at the Kung Fu Panda event but never got past “hi.”

    If it helps, I used to work for MCPS as a first grade teacher. I had children with IEPs in my class, including a highly autistic child. I’d be happy to help you.

    Send me an e-mail and I’d be happy to help with absolutely anything you need.

  25. Great questions, Stimey. I hope your confidence in discerning what’s best for each of you, as individuals, and for all of you, as a family, continues to grow. And that you share your journey with us. Esp. the other special needs parents!!

  26. And now *I’m* feeling guilty for not “being there” for you as you go through all of this. I don’t have any advice to add but I will definitely be thinking of you tomorrow morning and hoping you feel comfortable with how the meeting goes and any decisions that are made.

  27. I know I’m late to this but I agree with your other commenters. You know Jack. You ARE the best mom for your boys. And I think in times of anxiety, it’s always easy to feel like you don’t *know enough.* That’s what always happens to me, anyway.

    xoxo

  28. Yowie! Where was I this weekend? I think you know how I feel about your parenting skills (perfect, just as they are). You can do it, you will find the right solution, keep up the good work. Also, crossword away, I think a little benign neglect is good for kids, special needs or not.

  29. Don’t ever wade into the “coulda, shoulda, woulda’s”… maybe one day I’ll learn my own lesson :)

    You MUST have a life too. Find the book More Than A Mom. Read it. http://www.amazon.com/More-Than-Mom-Balanced-Special/dp/1890627518

    As for IEP’s. You need full support – we call them Ed Assistants here, you need OT, Speech, access to a PDD Teacher (ours comes a couple of times a month or more as needed to offer suggestions).

    He needs to learn to read, write, spell, math and language comprehension. We use the PEC’s to teach these skills since writing sentences is difficult but gluing a picture for the answer is much easier.

    Also, get the LeapPad Movies. All of them. My kids loved them and they helped a lot.

    S.

  30. I’m at work, freaking out about my (tentatively diagnosed PDD-Nos, extreme SPD, possible ADHD) 2 year old’s IEP in the fall. A friend directed me to AutMont and I finally landed on this page (and just let out a big breath). Thanks for posting this, and good luck to you :)

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