Septo-Optic Dysplasia, My Normal

Never thought this would be our normal, but it is

I am this parent

Click the link, read the post. Yes I am that parent, I am the parent that will never stop fighting for my daughter.  I am the parent who has been through the system that looks at the bottom line before the child with severe needs.  I am the parent that will work tirelessly with my IEP team, but will not hesitate to step up to the plate and fight for what my daughter needs. I am the parent that will take my school district to court if all else fails.  I am the parent that is will willing work out solutions, do trials with data to support the necessity. But if you as a system fail my child you better believe I will take you to court and fight for what my daughter needs.

It is heartbreaking that in my district many of our special needs kiddos come from poor socioeconomic backgrounds.  This means less education for the parents. It means the parents are more likely to just agree with what the IEP recommends. It means these kids continually fall through the cracks. More importantly, it means a CSE chair who has reached a point where families don’t fight back. They blindly accept her suggestions while their kids fall behind or stagnate and stop making progress.  I refuse to allow that to happen to my child.  So yes, I am that parent. You do not want to cross me because I will fight tooth and nail for my child and everything she needs. Note I say need. I know there is a difference between luxuries and need.  I am more than willing to listen to teacher and therapist suggestions, I have reduced therapies as needed, increased them as needed, so ultimately, I am not a problem parent. I am an advocating parent, and there is a huge difference between problem parent and advocating parent.  I talk calmly and politely, but I do it in a way that shows the depth of my passion and the depth of my concern for providing what my child needs.  I do not yell, I do not swear.  I am articulate and my responses are well thought out.  I am involved in my daughter’s education, and I will work with you to see my daughter gets what she needs, but also be forewarned, I will move heaven and earth for my child, and that includes you.

Don’t Swear With Your Mouth Full, Wow! Just Wow

So lately we have been dealing with behavior problems.  We are slowly working our way through the list of medical reasons to rule them out, but in the mean time, I have been trying to figure out what to do at home.  The last month has been very difficult, i was almost in tears over the Christmas break, and the weeks after because things have spiraled so far.  I’m not happy, she’s certainly not happy, and nothing any of us do seems to make a difference.  So I can across this book called “Don’t Swear with Your Mouth Full.”  I came across this book because I finally remembered the name of a child psychologist that we had visited one time waaayyyyy back when my daughter was 3.  (click on the title of this post and it will take you to the website) We obviously need help dealing with this and it’s not fair to leave her in this situation.  So while I was searching his name, I came across his book (oh the guy’s name is Cary S. Chugh).  The book he published was basically to deal with the difficult child.  The subtitle, I guess you can call it, is When conventional disciple fails unconventional children.  And wow, the strategies in here, while so very very simple, blow my mind.  And he does make note that the book is written for neurotypical kids, and for a child with more specialized needs, you may need additional help and support through a psychologist, I am still like, wow, this is a game changer, this makes total sense, and while I will probably still seek additional help for my daughter, this will be the new way to discipline my neurotypical 3 yo, because he can be just like the book describes.  Now I haven’t actually read the entire book yet, just about there, and will probably reread it again before I even start using it, but the methods he use will be sooo much more successful than anything we have done in the past.


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After 11 years, the heater makes you mad?

So in addition to SOD, and everything else that goes with it, my daughter also has SPD, or Sensory Processing Disorder (for more info check out https://www.facebook.com/sensoryprocessingdisorderparentsupport). She is both a seeker and an avoider, and one thing she avoids is loud noises, negative tones, crying, etc.  So joy of joy with also having a 3 yo, when he tantrums, she melts down, and then the screaming wars began, its a never ending vicious cycle. One always ending with my losing it and sending them both to their rooms, because I need peace fro mthe migraine threatening behind my eye.

So over the years various things have been triggers for my daughter when it comes to noise.  In the past it has been the delicate cycle on the washer (was worse in our old house when the washer was in the kitchen) but I swear this kid has super sonic hearing bc she can hear the washer thru the floor, thru her door, with music playing, and total instant meltdown, even if I prepare her for it.  So ok, we work around it, we do laundry when shes completely engaged in something, or toss some head phones on her.  A movie on pause, yup another meltdown, I don’t think there are many movies I have seen from start to finish bc we cannot pause movies in my house. Oh well, the next time i see it, I make sure I do whatever it is I always end up having to do during a part i have already seen so i can see the parts I havent.  We learn to deal and work around these things.  You would think by now I am a pro.

But alas, that is not the case.  I have no clue how to deal with her latest that sends her into screaming fits loud enough to wake the dead.  I hear her thru the floor, thru 2 closed doors, on the opposite side of the house with the furnace running, and we have forced air.  So what is this new problem, why its the furnace of course.  All of a sudden, over the last month, she has decided she cannot stand the sound of the furnace turning on and warming before the blower actually kicks in.  So what, turn he furnace off kiddo? Really when its 5 degrees outside, -5 overnight with -20 wind chills.  And of course, during the day its not bad because I can usually engage her in something else to distract her long enough for the blower to kick in, but at bedtime, once shes all snuggled and just about ready to fall asleep, the furnace will kick on, and there goes sleep for the rest of us.  Sigh, if there was ever anyone looking forward to spring so the furnace wasn’t running anymore its this one right here. Sigh and its not bc of the money I will save on the gas bill


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It’s amazing what pooping will do

So anyone who has ever dealt with or known anyone who deals with SOD knows that our poor kiddos deal with bowel issues.  They are a nightmare, a pain, the dreaded how many days has it been since a BM.  We have dealt with constipation for years, ever since my daughter was a baby.  She’s almost 12 now.  Thats a long time.  We go through periods where all is great, no issues, no help in the form of fiber or miralax or anything like that, and then there are days, weeks, months where we need all the help we can get.  We have even ended up in the ER because she’s been so backed up.

So we have been dealing with behavior problems for awhile, and yea puberty has hit too, so who knows how much is related to that her autism, her not sleeping, and every other various issue we struggle with on a daily basis.  But I realized over the weekend, its been awhile since she’s had a BM.  So I’m all like great now what?  We had started adding miralax every day, and still nothing.  So I add a stimulant laxative, and yay!!!! finally, poop.  Lol, but now of course, we have swung entirely the other way, but that’s ok, I will deal with that.  Why, you ask.  Why would I happily deal with loose messy stools?  Because, OMG!!!!!!! the improvement in her behavior the last 2 days has been phenomenal.  I can’t believe what a difference this has made.  So lesson of the day is pooping will do amazing things.


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We’re Not Special Parents

I came across this post today, shared by another special needs mom who deals day in and day out with what my daughter and I deal with. Every special needs parent can agree with most of the sentiment, I am not a special mom just because I have a special needs child. I am a special mom because I love that same child, in the same way you take care of your child. Yes, I do make it look easy some days, but mostly that’s because you only see us on our good days. If it’s a bad day we stay home, we deal with it privately. I don’t want to deal with a complete and utter fugly meltdown in the middle of the store/holiday dinner/whatever. You see most of us “special parents” on the good days. When we ourselves hold it together and don’t lose it. We do make it look easy after awhile. But what most times you don’t see is the tears, the despair, the loneliness, the heartache, the grief, and every other negative emotion that we may deal with at any given time.

All That Hath Life and Breath

Special kids go to special parents.

I hate that cliché. I know it’s supposed to be a compliment, but I think this statement does more harm than good for the parents, the kids, and the special needs community as a whole.

First off, it’s flat out not true. Special needs kids are born to all kinds of parents, just like typical kids. There are many special needs parents who neglect or abandon their children, who don’t seek out therapies and specialists, or who decide things are too hard and make decisions about their child’s future based on their own fear rather than what’s best for their son or daughter. And you will find the exact same thing in parents with typical kids.

Second, this statement is incredibly discouraging to parents just starting the journey. Cause ya know what? We don’t feel (or want to be) special. We look at…

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Can I ever pee alone?

I mean seriously?  Is this even a remote possibility at all?  Every mom knows this feeling, the inability to go to the bathroom alone.  If you shut the door, they just knock on it scream for you to come out, or just open the door and walk right in (if they can reach the door handle). So yes, I deal with this on a daily basis.  I have pretty much gotten used to it, given up on closing the door, bc I would much rather have the kids walk in and talk to me, than have them bang on the door and scream.

But yesterday I realized something.  My problem goes beyond just the kids.  And no, it’s not even my husband.  It’s my 2 dogs.  Even they follow me into the bathroom, when I get home from work and need to pee, or any time until they get their dinner.  When I wake up in the morning, before I am even fully awake, I have a dog’s wet cold nose in my face, trying to nudge me up off the toilet so i will get them breakfast.  I mean wtf?  Can I not go to the bathroom in peace?


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I have a love hate relationship with my endo

So I honestly love my daughter’s endo.  She listens to my questions, she genuinely cares about my concerns, she gives good answers, and will tell me if she doesn’t know for sure.  She does the bloodwork required at least once every year, and if I have a concern, she will check them again.  She is awesome.

What I don’t like is the office just switched my daughter’s growth hormone medication.  My daughter does not produce any growth hormone.  Some would say eh, oh well, she just won’t be very tall.  I mean she doesn’t produce any, she used to be failure to thrive because at 3 years, she was in 18 months clothes.  Her growth hormone has helped her gain weight and grow taller.  But being such a miraculous thing, growth hormone helps with more than just linear height and weight.  It helps with muscle mass, brain function, teeth, blood sugar, sooo many different things. 

Growth hormone is only given as an injection.  My daughter is 11, been on it since she was 3 years old.  Since the beginning, we have used a regular old insulin needle and GH in a vial, we had to mix it ourselves.  Yes mixing it was a pain, but the shot itself sooo simple.  2 seconds from start to finish, and it was done. And now her office has switched us over to a GH pen.  It is literally a prefilled pen containing premixed GH.  You add a needle, dial up the dose, and inject it.  Sounds simple right? In theory yes.  But it takes 5x as long.  I literally have to sit there and hold this needle in my daughters arm or thigh or butt for 10 seconds.  4 seconds to do the actual injection (it apparently takes that long to get the full dose out of the pen and into her body) plus an additional 6 seconds of holding the needle in place to make sure none of it comes out of the needle hole when you remove it.  This is just a freaking pain in the ass.  I don’t understand how anyone could prefer this over the syringe and vial methods.  I certainly don’t.