Monday, December 24, 2007

Feeling pretty down

Today was a very rough day with Maya. She was doing well for a while, seemed to be making real progress with her therapies, but the past few weeks have seen a fair amount of regression.

The echolalia and pacing have increased again, as have the frequency and intensity of the meltdowns, both the predictable ones and the where the f*ck did that come from ones.

I feel worn out. I feel like I'm failing my daughter. I'm trying so hard, but I'm just not able to reach her right now, not able to be the parent that she needs, whatever the f*ck that is. I'm so tired, and so frustrated, and completely out of patience. It's getting harder to see the small steps forward among the bigger ones backwards.

Jay and I have a meeting scheduled with Maya's therapist Wednesday morning. Right now I'm feeling like she's not making the progress I'd expect, or at least that I'm hoping for, but maybe she'll have some insights into all of this.

I just want to be able to ask my daughter a simple question like "are you hungry?" and be sure that I'm not going to get an earful of Dora in return. Or worse, ignored completely. I'm just worn out from all the cajoling I have to do lately to get her to engage in any kind of meaningful communication. How in god's name am I supposed to send her off to public kindergarten next year, in a shark's pool of 35 children, one teacher, and one aide? Her peers are getting more socially sophisticated with each passing month while she gets left behind. How on earth will she find her place?

Her teachers say she's doing really well in school, participating beautifully, that you'd hardly realize there was an issue. I guess she saves up all the shit for when she's at home. Every time I allow myself to even consider having a third child we have a week, or a month, like this and I realize that I must be insane. I'm barely coping as it is. I'd have to be crazy to think that I could add another child to this mix.

She is so intelligent, and can be so charming, and funny, and clever, and just all around wonderful, and then we have days like today, where just getting her to agree to get dressed nearly sparks World War III.

I'm just so damn tired.

I love her with all my heart and soul, but it's just so damn hard sometimes.

19 comments:

Maddy said...

I don't really know enough about her to comment, but I do know that for my boys everything from echolalia to meltdowns is far 'worse' at this time of year or any other holiday where there is an upset in the routine.


Compliments of the season from me and mine to you and yours.
Cheers

This is my calling card or link"Whittereronautism"which takes you straight to my new blog.

Janet said...

I'm sorry, Robin.

jeques said...

I'm sorry about that Robin.

When God sends an angel to earth, He carefully choose the people who would become parents to his special angels. God Choose you because He finds in you the love that Maya needs. Love, I think that is enough.

I have to mention I like your very transparent and honest way of writing. I can see through your heart, I feel your emotions.

My prayers.

I wish you well.

~ Jeques

margalit said...

I so get how you feel. But you know that it isn't your parenting. Maya has a neurological problem. It has nothing to do with how you parent her. You do the best you can, and sometimes it's enough and sometimes it isn't. But it sounds to me like you need to familiarize yourself with Wrights Law http://www.wrightslaw.com/
and get yourself an educational advocate right away. This is a child that isn't ready to mainstream into Kindergarten.

I do ed advocacy work, so if you want to email me, I'm happy to help you get her the right kind of services. I know the lingo, I know how to get around the crap the public schools give you, and I know what to do when they refuse help. In the meantime, you should look up your school system's legal proceedings and see what law suits they have had against them for sped. That will give you an idea of what you're dealing with. Lots of law suits mean you have a school district that you're gonna fight every step of the way. And vice versa.

As for home vs school, most kids with 'issues' try very hard to keep it together during school and fall apart at home. It's classic. They are tired and hungry and grouchy when they get home and then tend to disintigrate. But that's a GOOD thing, because it means that they feel safe enough at home to melt down. It sucks for you, but it's actually a positive for Maya.

Lea said...

Hey Robin, thanks for letting us know what is going on with you.

You are a good mom, and you will find a way to help Maya be able to function to the best of her abilities. And you model for us the asking for help and information and being real with where you are.

I hope your day is better and I am so grateful for you.

Susan Helene Gottfried said...

HUGE hugs from me and the band; I know exactly what you're feeling.

One thing I've noticed with my kids is that before they'll have a big leap forward, they'll regress. #2 finally took the forward leap this week (and I like where she landed!).

Maddy's got a point about this time of year. Hang in there.

More hugs from us. Please watch Trevor's hands...

Carol Anne said...

oh sweetie, I'm so sorry you are having such a rough time right now. I have had days like that with #1. Where I just feel like I am the wrong mom for him. Its the worst feeling, but you know what, its not really true. You are doing all you can to help Maya. I hope things improve soon!

Janice said...

Robin, I'm sorry things have been so hard right now for you with Maya. I know you will figure it all out with time. It's O.K. for you to be tired and frustrated sometimes. You're going to get through this. Don't be hard on yourself. You're a great mom. I hope you can breath deep and have some good rest. I have issues here with my kids as well, so I understand your feelings of being overwhelmed and not understanding what to do. I pray for wisdom for you and for me. Much love and hugs.

Emah S said...

HI, wanted to offer you some practical suggestions. I used to be a Preschool Special Ed teacher back in the states in my other life and well, I get it.

Have you tried any form of picture communication with her? For example....make cards from clipart, or take pictures of the responses that you want to get out of her. Back them with velcro (called scotch here), and make a chart that can be picked up and brought over to her at the table or in the living room for ex. You ask, "Are you hungry?" and she sees 2 pictures--one of someone playing and one of someone eating. (the yes and no). In the beginning she (with help even) will point to the eating picture and you say, "Yes, EAT." If she repeats here, it's fine and good and appropriate. Am I making sense? This is something that can be built upon, and you can help elicit the language that you want and show her what you're expecting to hear. I could go on and on. Email me.........I'd be happy to help more!

hugs.....Susie (aka EmahS s.enteen@gmail.com)

Darcy said...

Oh my friend. Ya know what? You are one helluva an awesome mom. I know this because you are trying your damndest and that's all anyone can do. I admire your honesty, and your pro-activeness as far as Miss M is concerned and you will muddle through, both of you and it will be OK.

Thinking of you buddy,

Anonymous said...

Instead of regular kindergarden, you might want to check into sending Maya to a special gan next year. Specifically, a "communication/language skills" gan. I think the maximum number of kids allowed in this or any special gan is 8.

She can stay there for trom chova and chova and have a good chance of really being ready when it's time for first grade.

Robin said...

Thank you everyone for your kind words and support. I wrote a big long response (emphasis on lonnng), but it got so long that I decided it needed to be its own post. Please look here to read it.

sandierpastures said...

Sorry for the late comment Robin, I've been down with a yearend flu, the one that comes with a big bang.

Sorry to hear you've been having a rough time but saying back what you told me before, don't be too hard on yourself. SOmetimes there are things that are beyond our control. I hope things get better. If you feel like exploding or something,let someone take over, like your husband if he is around.

I'll go read your next post about this one. Hang in there.

Also I have read somewhere that God gives us certain difficulties because he knows that we can handle them.

Space Mom said...

Sorry I haven't read in a few days... Things are going to be good for a while and then backslide. This is true for any kid.

Hang in there and keep fighting for Maya!

myrtle beached whale said...

I hope everything works out for your family. Thanks for taking the time to comment on my blog. With all that is going on in your life, I am humbled.

Fairly Odd Mother said...

I had to go back and read what happened here since I'm just getting back to the computer---I'm so sorry for all that you are going through! I hope you can find some answers soon but please don't blame yourself for your feelings---I think I'd be feeling the exact same way. And, I agree with Margalit in that kids who save their meltdowns for home do so b/c they feel safe to do it at home. Hugs.

UL said...

Oh Robin, I am so sorry, just got here and was catching up..it's so easy to feel the guilt but be strong for her, that's what she would want you to be...here's wishing the very best for you and Maya in 2008. Hugs and more hugs, UL

Shannon said...

Robin,
I wish there was something I could say to make your load a little lighter. Motherhood is challenging enough in and of itself. Adding a special need must feel overwhelming sometimes. I will offer what I can, my thoughts and prayers for many good days and huge triumphs for little Maya.

Fourier Analyst said...

I will be sending you a personal email on this one. Hang in there Darlin'!