Lost Patience (& Introducing myself)

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iVillage Member
Registered: 03-27-2003
Lost Patience (& Introducing myself)
10
Thu, 11-02-2006 - 3:45pm

Hi everyone.

I have been lurking for a few weeks, but I have not wanted to post yet. You see, my daughter has not actually had a formal diagnosis yet. We should get that on Monday the 6th. But I just feel like I need some support. I feel like I used to be the most patient person with her in the world... and recently, that patience has just gone away. She has Aspergers. Or something on the spectrum. I saw the signs when she was around 2. At least that is when I KNEW what I was seeing. My nephew has it as well, and I remembered how he had been at her age. (He is 18 now.)

Anyway, I was just having a moment where I needed to share something. See what sort of feedback I will get. My baby girl just turned 4 in September. She has major issues with repetitive speech and echoalia. She gets "stuck" with a thought, MUST have things a certain way, that sort of thing. I cannot remember the last time she told me she loved me. I do know the first time though. She was 3 years and 1 month old. She actually said it unprompted.

This afternoon I got so upset with her. I put my son down for his nap (he is going to be 3 on the 24th, and from what I can tell has no issues at all.) and I wanted her to nap a bit too. Then I could at least get some laundry done so my husband would not come home from work thinking I do nothing all day.. anyway - she is potty trained for during the day - she just gets a diaper still at night and when she naps. I have tried to get her to nap without it at home - and she panics. She will cry and cry. (She never slept at night - the first 3 1/2 years of her life we dealt with hours of crying at night.. I wanted to shoot that Dr. that says children should "cry it out" - I KNOW it works for some kids, not my Jillian - she would have cried ALL night if I had not been inventive in the ways we would get her to sleep. Finally we found melatonin, and she actually goes to sleep at night.) Anyway - I am getting off course... I wanted her to nap this afternoon. But she was refusing her diaper. She wanted no diaper. She would not nap without it. But she wanted her diaper to nap, but she would not let me put it on her. This went back and forth until *I* was ready to cry. Finally I got it on her, and took her into her room. Today was just not my day though. Her covers were not right, every little thing was just "wrong" to her. I tried just leaving her in there - and I was able to at least start a load of laundry.. but she cried and cried. SO - I went in and got her, held her in my arms, and cried too. We must have been a heck of a sight.

It is like, I have known this diagnosis was coming for so long - but my husband was totally in denial. Now finally I have him understanding, and we are going to this specialist on Monday... and *I* am feeling overloaded. I KNOW she will be fine. And I KNOW I can get her through this to the point where she can lead a normal life. But today, I was having a moment. A "I didn't want this for her" moment. Not that I had any control over it of course. But I am the one that has been saying we needed to get help - and now I am about to have it... and I just feel - overwhelmed.

I don't know if this made sense to anyone - but I just wanted to share. I figured if anyone could understand, some of you could. (I knew about ivillage's boards because when I was pregnant with her, and with my son, I used the "expecting club" boards.)

Anyway... how do you all get through the hard days?

Lisa (& Jillian, 4 yrs)
Long Island, NY

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iVillage Member
Registered: 04-07-2003
Thu, 11-02-2006 - 6:36pm

Hi Rina from Long Island too. I know there are other Long islanders are here too.
Where on Long Island are you from because Nassau is different from Suffolk. I think.I am in Suffolk county. But at age 4 you need to go through your local school district for services.

If your daughter is in preschool talk to the teachers for help. But the first direction would be to go through the district. Call them up and ask for an evaluation and why. They will then tell you how to proceed. Right now you will want her on their radar so to speak so that the school district can help get what you need through them. They will have you go through a speech evaluation, Occcupational therapy extra. I know with Josh being on the specturm was not a common thought 8 years ago when we made the transition from early intervention to preschool. looking back the signs were there but nobody knew how to read them. So much has changed in that time so the people doing the evaluttions will do the better job.

But You are lucky depending on your district. Most of us on Long island have been mostly happy with what we have been getting with services.

If you find that the school distirict is not helping then go through the hospitials for a developmental peditrician and a neursychologist to help do the determination.Again I can help you depending on where you are. But I was lucky with St.Charles but again being where you are you have so many choices.

Rina

Avatar for whyzpurs
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Registered: 03-27-2003
Thu, 11-02-2006 - 7:03pm
Thank you so much. I am in Port Jeff Station. (North Central Suffolk County)

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iVillage Member
Registered: 09-13-2006
Thu, 11-02-2006 - 11:46pm

Hi Lisa,


So much of your post sounds familiar, although my AS son is almost 9.

iVillage Member
Registered: 03-27-2003
Fri, 11-03-2006 - 6:53am

Welcome Lisa. I don't post often but stop in fairly regularly. I also could relate a lot to your post. My daughter is 9 and AS also. We didn't get a diagnosis until this year though. I knew something wasn't quite right with her from day one but never knew what it was or that it was anything more than her just "pushing my buttons".

Since getting the diagnosis and me reading every book on AS that I can get my hands on, we have gotten along so much better. I have learned to have more patience (although not always easy) and am starting to learn more about teaching Haley to deal with her issues too. She is much more aware of herself and how she comes across to others. She is thrilled with her diagnosis just as much as I am because she felt she wasn't "normal" and now understands everything so much better. She knows now that she is "normal". She is normal for her and can function so much better.

For me, when the days are unbearable, I step outside for a moment, count to 10, take a few deep breaths and go back in. Taking a minute or two to re-focus is a great thing. Not always easy to do, I know. I find with Haley, if I start getting worked up, so does she. I have to work hard to stay calm with her. Any sign of anger on my part sends her over the edge. Worst thing for me is that it causes me to bottle things up so I have to really make sure to allow myself some "me" time.

Jill



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Mom to Erin (19) and Haley (10yo Asp
iVillage Member
Registered: 06-25-2003
Fri, 11-03-2006 - 10:27am

Lisa,


Sorry for the delay in welcoming you to the board. I am very happy you decided to de-lurk.


I am a Long islander (kinda) also. I live in Nassau, though.


I too, related a lot to your story about Jillian. I have sat down and cried alongside my kids. We all have those days. It does get better with time.

-Paula

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iVillage Member
Registered: 04-07-2003
Fri, 11-03-2006 - 12:50pm

Very Interesting. I live in Coram and my kids go to Longwood school district.
Comsewouge is a much smaller district than Longwood. But I am going to give you a suggestion. Have you checked out Just Kids in Middle Island? I have heard many good things about the school.Looking back I probably would have been better off taking the hit when Josh was evaluated there to have them provide his various services. It is a preschool that is intergrated regular kids and it provides services for special needs kids. And they can provide you with all of the testing you need. On the school district's bank account. Also if she proves to need services, the school district has to pay for them so she can go to preschool for free.I am not sure how high of grades they go but it is worth checking out
Also Joshua sees, Doctor Marci Silverman(developmental ped) over at St. Charles. I find her to be good. I also know Stony Brook has a good program too. It is just that my insurance only allows me to go to St. Charles and Mather. St. Charles used to have a program for special needs kids but I think they either moved it off the hospital campus or it no longer exsists. But I think if you don't like Just kids then go over to Stony Brook (it is a heck of alot closer than Northport) and find out what they have. Remember it is a teaching hospital so they should have the most up to date medical knowlegde.And don't forget out here many doctors do have dual priviledges between Stony Brook and St. Charles.

I remember Josh at 4 and he was really just coming into his own with Language but he was so repepative and I never could have a true conversation with him. Still have a hard time with it sometimes. He just gets so obessed on things sometimes.
Rina

iVillage Member
Registered: 02-24-2004
Fri, 11-03-2006 - 5:59pm

Hi Lisa!

Welcome to the board. My son is 7 1/2 and still has the echolalia. He gets stuck on certain topics all the time. And loves repeating!!! Although, being a bit older now, he is aware that he is doing it. I do remember how frustrating it was though, when he was younger, and unable to communicate much with me. So I did just want to send some hugs your way.

I also came on this board before my son was actually dx'd. The support here is wonderful. Hope to learn more about you and your family.

michelle

iVillage Member
Registered: 08-26-2005
Fri, 11-03-2006 - 9:42pm

Welcome Lisa,
I have a 3.5yr old DS diagnosed last year with PDD-NOS and I also have a daughter who is 2.5yr old undiagnosed but with issues(mostly sensory). I hope you stick around because this board and all the Ladies are very supportive of one another.

Teresa

iVillage Member
Registered: 03-26-2003
Sat, 11-04-2006 - 8:59am

Hi Lisa! Welcome! I'm Christie - mom to two boys - Vaughn my 8 yr old aspie and Jack my terrible 2 yr old warrior. My guy was not diagnosed until he was 7.5......believe me, I lost my patience on a regular basis......but once there was an explanation for his behavior (his diagnosis) - it did get a little easier......I guess I just became more understanding and learned to look at what was going on in a different way. One of the most important things I learned early on here at this board is that "behavior IS communication"........There are still days that I lose my patience (having a little one in the full-blown terrible 2 mode does not help) - but it is getting better. Son's behavior has improved since I became more understanding......we still have our days.....but not as many.

Also, since son is considered developmentally delayed....I really believe he did not go through his "terrible 2s" until he was 4......just my opinion.

Again, welcome here and I hope to learn more about you and your family.

(SMILE)
Christie

iVillage Member
Registered: 03-20-2003
Sat, 11-04-2006 - 10:43pm

Welcome to the board, Lisa.


Funny you ask about bad days....I've had a couple of those this week.

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