I'VE HAD IT, I'VE HAD IT----Long

iVillage Member
Registered: 04-01-2003
I'VE HAD IT, I'VE HAD IT----Long
8
Wed, 11-24-2004 - 5:25am

I think I need to seek some sort of therapy but I can't go without taking Makenna and then what would be the point because she would freak out. :(

Ok, so Thursday I got her to take some steps in the grass (mentioned in my brag...thank you to all who responded by the way! I meant to reply but this happened and I've been losing my mind ever since). The very next day she completely changed. I at first thought it was due to over stimulation from the day before but she has kept it up and the OT assures me that over stimulation would not have lasted this long.

She's always freaked out if anything touches her (hair, lint, fuzz ball...or even us) but starting on Friday she now freaks out if there is anything on the floor or anywhere near her even if it is NOT touching her!! I'm talking she will be sitting on the couch and start screaming bloody murder and shaking and reaching for me. I can't even figure out what she is so upset about unless I look closely at her eyes and follow them all the way to this TINY little piece of string that isn't even near her. She now does this for anything! If she see's a fuzz ball across the room, she will scream and go nuts until we physically remove it and even then she has to hug on our necks for a good 10 minutes to calm down!

She loves to walk outside on the sidwalk but there were leaves on the sidewalk and she used to just step around them (she was always aware they were there and would never step on them but didn't freak) but now she screams bloody murder until I move them all out of her sight! There is no other option! We've had to start vacuuming 3 times per day just to get up microscopic crap I can't even see but she CAN! And she wants the cats to lay in her lap and roll around but then when they shed she freaks out (even if it's not touching her).

The OT is bascially at a loss other than to say it's either that she's advancing cognitively so that she is aware that even if a fuzz ball is not touching her right then, it still poses a threat and could touch her later OR she thinks it's all purely behavioral because we've positively reinforced the behavior by always removing the item. I don't think we've reinforced the behavior because we never had to move it before unless it was touching her so this is change that happened over night. I don't know what to freaking do man! The OT is the one who always told us to try not to stress her out when it came to sensory stuff so we took care of what was freaking her out. Now she's telling me this may be OUR fault. I know she doesn't really mean it that way but that's the way I take it.

I'm pretty much irritated at all times, angry, depressed, and just want to give up. I'm stressed beyond words. At this point I don't think she is normal, will ever be normal, or will ever get better. And I get angry at people who tell me she will grow out of it and to stay positive. I know they are trying to be supportive but it feels like they are dismissing my feelings like I have no reason to stress and I should just happily struggle through this because they are SO SURE it will change. How can they be sure? She's had problems since birth and now she is 20 months and things have only gotten worse. What in the he** has happened that they can just be so sure she will be fine? Optimism is great for people who are not TRAPPED IN THE HOUSE 24 HOURS A DAY WITH A CHILD THAT IS BEYOND DEMANDING! What is the point of doing brushing if she is not only getting worse, she's doing things she NEVER did before??? She also seems "irritated" all day long. She'll want up in the couch and then immediately start doing her "uh, uh, uh, uh" for something else or to get right back down. When I put her down, she freaks out urgently going "uh, uh, uh" wanting back up. So, ALL DAY LONG--and I am NOT exaggerating--I hear "uh, uh, uh, uh, uh" in a half whining half screaming voice because she is constantly wanting something and is never satisfied and "AHHHHHHHHHHHH" blood curdling screaming because there is a lint ball, fuzz ball, cat hair, hair, string, etc somewhere just staring at her daring her to walk near it.

I'm telling you girls, it's so bad now that my dh (who has the patience of a saint and never gets frustrated with Mak) says he can't take any more of this and looks forward to going to work every single day! And it doesn't matter if he is home because she is obsessed with me and he can't even pick her up to take her away from me to change a diaper or brush her teeth because she has such a HUGE meltdown. As soon as I walk into the room to try and help out dh, she begins to calm down. So, it's everyone's advice that I need "time to myself". Yeah, sure, I'm not an idiot, I KNOW I need time to myself but it's freaking impossible now!

What bothers me the most is that I let my stupid guard down and WAS thinking positively with high hopes that things were getting better (VERY SLOWLY but at least they were improving) and the OT was FINALLY going to start doing more therapy (like the therapy ball) but she has now put that on hold because Makenna hugged my neck tight the WHOLE session today because the lining inside her pant seam had a tiny dangling string. I snipped it off but it didn't matter at that point, she was freaked and nothing would work except changing her and even then she had to stay in my lap for comfort.

I feel so alone in all this. The OT says she has never seen any other child like Makenna and is frequently at a loss. She said today, "The only thing consistent with Makenna is that she changes drastically all the time." Does anyone know how stressful this is? Changing drastically for the good is one thing, but that's not what she does. She changes for the worse. I'm waiting on an appointment for an evaluation to see if there is anything besides SID going on. I used to have a "plan" but now am just caught up in the whirlwind being slammed around and am beyond stressed. I just don't want to deal with this crap ANYMORE! I'm tired of walking around the house removing microscopic fibers so my daughter can be in the same room and running around like a chicken with my head off trying to figure out what she wants because ALL she will say is "uh, uh, uh" If I hear one more "uh, uh, uh" I'm going to slam my head into a wall. :(

Shanna & Makenna (20 months)
www.littlemakenna.com

iVillage Member
Registered: 09-30-2004
Wed, 11-24-2004 - 8:24am

Oh my God Shanna..


I'm so very sad for you & for Mak'.. what you're experiencing sounds horrific & downright unbearable--I feel so heartsick for what you're going through. It's such a helpless place to be in. I understand.


Madison had reactions something similar, yet because she was older, she would get

View Raw Image' jQuery1221393579256="17">

iVillage Member
Registered: 03-27-2003
Wed, 11-24-2004 - 2:51pm
Wow - I'm just a lurker but I felt compelled to respond to this one. I am sending you as many strength and peace of mind vibes as will fit down the computer line.
My main advice (and you probably won't like this one) is for you to get a job and that way you will retain your sanity coz you won't be stuck in the house with her all day long. I dont' know if that is helpful advice as I dont' know your situation or if Makenna could cope with a daycare or nanny situation.
Anyway - I have an almost 2 year old - doesn't walk or talk and has medical issues including chronic constipation and abdominal pain. He also fusses the whole freaking time! He is in full time daycare coz I just can't be with him all day long with his non-stop moaning. I dont' know how you do it. I can relate to going bonkers because my kid moans non-stop and wants something all the time - but doesnt' know what he wants and is hardly ever satisfied.
I would also recommend you see a neurologist asap. Maybe SID isn't the whole story here - but again I dont' know the whole story so maybe you know there is something else going on.
I wish you the very best of luck - I really do. It sounds like a very hard situation. Poor Makenna to be so freaked out over everything - and poor you for having to deal with it.
Love Sarah
iVillage Member
Registered: 04-01-2003
Wed, 11-24-2004 - 3:49pm

Thanks Colleen! I SO relate to 'holding your breath' mode! I live in this mode daily! Even if she's doing ok for an hour (which hasn't happened since Friday) I can't just enjoy that hour because I know something horrible is coming as payback for that good hour. That's just the way it's been since her birth 20 months ago!

It's comforting to hear that Madison has to have a safety zone around her also. It's nice just to hear someone else has a child who does this! I don't think as she grows older she will remove the objects herself (that would be SO nice!) because she is deathly terrified of the prospect of touching them. And I COMPLETELY relate to looking forward to the school bus! Only at that moment can you take a deep breath and then realize you'd been holding it! All of us in our situations need SOME kind of release or break. I have often wished Makenna went somewhere so I could have that to look forward to! lol.

I've tried to leave Makenna with dh and it's been disasterous and more work for me to clean up later. I used to be able to at least leave her with him and run to the store alone but now she is fixated on me and I can't even be a room away from her. I talked with dh and had him get the 800 number through our insurance. They pay 8 sessions free per issue so if I went to talk about Mak we could count that as one issue, then I could talk about being locked in the house, that's another 8 sessions, etc. I asked dh to come home from work and stay with Makenna while I went by myself. I know he wanted to come with me but I honestly want to go alone...I'll take ANY alone time even if it's in a Psychologist's office!!! This may be disasterous because of how she can get when I leave her but I'm willing to take that chance at this point.

Thanks for the info about other families through the EI program. I may look into that also. At this moment in time, I honestly just don't even have the strength or drive to make any new friends (which I would feel obligated to do...you know, share stories, help out also, etc). There are many days when I think it would be good to get Makenna out of the house but then I calculate the energy it would take for me to take a shower, get dressed, pack her bag, get her ready and I just give up. It seems too overwhelming. I go weeks without even getting out of my pajama's! My mother even suggested taking vitamins in the meantime today and I instantly felt SO much pressure and overwhelmed! I know she thought I was crazy because I told her it was just too much to try and remember to add it in my day and throw something else into my life that I have to do. I already gave up applying my medication creme (skin condition) twice per day as well as my facial cleaner and moisturizer twice per day because I just felt overwhelmed adding it in on top of doing all the stuff for Makenna. It sounds so strange to think moisturizing your skin would overwhelm you, but I have to face the fact that I'm at depressed and that is what it does, it zaps you of your energy. I'm not suicidal but I know there are ranges of depression and I'm at least on that range.

Thanks for all your support. I've had ups and downs before with all this...haven't we all? But this is just one big downer now! Even if the Psychologist himself (or herself) does nothing for me, hopefully just getting to be by myself for an hour will do the trick!

Shanna & Makenna (20 months)
www.littlemakenna.com

iVillage Member
Registered: 04-01-2003
Wed, 11-24-2004 - 4:04pm

Thank you for your support and response Sarah! Oh the number of times I've fantasized about getting a job and putting Makenna into daycare! lol! I started that fantasy when she was a baby! But, it's VERY clear she couldn't cope in a daycare setting or even with a nanny. It's a minimum of a two month adjustment period for her to cope with anything and that's a SLOW adjustment period...limited exposure at a time and often she still doesn't adjust. Her reactions are not just meltdowns or throwing fits, she physically shakes like she is having a seizure and promptly breaks out into hives all over her entire body. If she doesn't calm after that point, she gets sick. The OT feels that if I were to make a change like this, it could have some serious effects on Makenna. I feel this too in my heart. If I thought for one second that she could handle it (even if it were stressful, but she could adjust) I would do it but I know it's just not the case. The whole EI team has been definitely concerned with Maeknna because on more than one occassion I've heard them worry about how she will do in the school environment. They are hopeful that starting this early we can at least get her to the point of going to school. We'll see.

I'm so sorry you also endure the constant moaning with no satisfaction! It really does take a toll on you both physically and emotionally! I'm glad you are able to have him in a daycare setting during the day. It is so important to take care of yourself so you can take care of your child. I know this and have tried to heed to these words but I just haven't found a way to do it yet.

I'm with you in that I pushed for a evaluation from EI. Initially they didn't want to do it this young but by the time we get the appointment she will be almost 2 anyway. I don't know what all testing they are going to do but at one point neurology was mentioned. I don't know if that's further down or during this appointment. I have to check.

That's been part of the problem. I'm so overwhelmed and stressed that I don't even really navigate Makenna's treatments. I just nod and agree with whatever they set up because I'm too tired and stressed to make any decisions and do anything myself. I constantly feel guilty because I think if I only had the energy I could work extra hard at this and maybe see an improvement. Right now I'm working hard at just maintaining day to day without losing it. I haven't even tapped into really working on the sensory stuff!
Thanks again for your well wishes! It really means a lot to me to have support!

Shanna & Makenna (20 months)
www.littlemakenna.com

iVillage Member
Registered: 04-01-2003
Wed, 11-24-2004 - 4:19pm

Ok..I'm getting the 800 number for Psychologists tonight!! Makenna stayed in my lap hugging my neck for 2 hours straight today but the entire time saying, "Uh, uh, uh, uh, uh" whining in my ear while reaching back with one arm to point BEHIND her without even looking at something that was "upsetting" her! She had no clue what she was pointing at because I would try to turn her around to find out what was bothering her and she would freak out if I removed her bear grip. So, I went to the bathroom with her on me like this and she didn't even budge or move to look around. Finally she got down but it was one big "uh, uh, uh," and then crying because she didn't even know what she wanted. She then proceeded to try and put my dh's sandals on my feet one at a time and then take them off one at a time and put them back where they were. If I walked away to do anything she screamed. So, here I am standing in the living room for 20 minutes straight putting on shoes and taking them off, putting on shoes and taking them off. I tried redirection, it didn't work. I eventually just said "all done now" and refused to put them on again. Major screaming and then she wanted right back up into my lap for another straight hour. I put her down for a nap because she was rubbing her eyes and she's been in there talking loudly and now she is screaming...no sleeping.

I tried to give her a bath Saturday and she is back to FREAKING in the bath! It took me 6 ENTIRE MONTHS OF WORK EVERY SINGLE DAY to get her to take a bath in the tub and now it's been completely undone. So, she hasn't even had a bath since Saturday! How bad is that? But, at least it's not like she's getting dirty! She refuses to let anything touch her for goodness sakes!

So, while she is screaming (now she's moaning and groaning) I'm trying to concentrate on getting school work done that is due. I don't know about anyone else but I really can't concentrate when she's crying...must be programmed in me as a mommy. So, I'll be behind in school work now. Oh wait...she's been quiet for about 3 minutes...oh...no...here comes the cries again; nevermind.

Shanna & Makenna (20 months)
www.littlemakenna.com

iVillage Member
Registered: 09-20-2004
Wed, 11-24-2004 - 5:58pm

Shanna,

I'm so very sorry. It sounds like you have it so hard. I know you heard this from the other girls, but you should really try to talk to someone. If you can't see a counselor try calling the special kids network and ask about "parent to parent" it is a support group that will match you with someone in a similar situation. I know here in Erie they meet once a month for a support group. I haven't actually went, but they send me a newsletter every month.

As for not being able to leave Makenna with anyone - I don't know what to tell you. Gabriel definitley is attached to me too and when he knows I'm leaving you can see the anxiety building. He is fine with dh now, but does ask for me an awful lot. It has gotten better. You are going to have to get her comfortable with your husband for your own sanity. YOu need that outlet.

I can't tell you how many times I've cried to dh on the phone b/c of the crying and whining. Thank goodness he goes to school three days a week for 2 1/2 hours a day now. I started waitressing banquets one, two days a week and it has been wonderful. I just want and needed to get out of the house. I hope that once you get Makenna in the early intervention program that you will see a differrence. If your not happy with her Ot maybe you should try to get a new one. Noone should make you feel as if it is your fault.

You are not alone Shanna! I have more good days than bad days now - I hope soon you will too. It has gotten a little easier now that he is getting older and able to communicate better. Lots of hugs are coming your way!!!

Kim

Photo Sharing and Video Hosting at Photobucket
iVillage Member
Registered: 03-27-2003
Thu, 11-25-2004 - 10:00am

Shanna, I feel for you - I really do. If it's as bad as you say it is - I say go to your pediatrician right now and ask for a referral to a neurologist. As you know - this is not normal behaviour and you and Makenna cannot carry on like this.
It is too much to ask of you to deal with this. She needs help - maybe even medication?

Must go
Love Sarah

iVillage Member
Registered: 11-01-2004
Sat, 11-27-2004 - 7:11pm

Oh Shanna.