I don't know where to turn anymore

This is gonna be long...I apologize.

I feel like I'm going to cry and just want to scream for someone to help me.

I haven't addressed noahs anxiety issues too much, but some people on here have actually witnessed it of late and seen what I'm referring to.

I see it getting worse DAILY and do not know what to do anymore, as everyone is moving SO slowly in assisting me.

Background: He was always a clingy baby and infant...seperation anxiety a bit more heightened then average..then tapering off age appropriately around the 2 yr mark.

Recently ( last 8-10 weeks) ...things took a HUGE, DRAMATIC, turn for the worse.

In the middle of his school class( meets once a week) , he started screaming for me. Since that day he has barely been able to leave the house without SEVERE Anxiety.

If anyone looks at him , he screams, turns away, blushes, yells NO.

He refuses to participate in school, Speech therapy, Parent training, or nutritionist visits, all of which have been ongoing for over a year and he is familiar with.

He is closed off from family members, and freaks out if another child ( even a friend) comes near him.

We cant go to the park b/c of other children, we cant go to the store , because someone will look at him or talk to him.

He cries to go " home" the second we leave the house, and sometimes when fearful during the day, says " mommy , go home"..and I have to say, "we ARE home Noah".

HE also says he is "Scared" 100 times a day, of EVERYTHING. I say our SLP is coming, he shakes and says " I scared". ( He usually LOVES her)?!?!


I cant take it, I'm literally going crazy from the stress of this and trying to do the right thing, yet I have no clue where its stemming from.

His SW at school and teacher believe it to be a "phase" ...and yes I know as his mom I'm internalizing some of it...but it seems like a mighty big PHASE and what if its not and we failed to get him help?

So I contacted EI ...UGH...its like pulling teeth to get people to even call me BACK. Of course this all occurs RIGHT smack in the middle of his transition to the school district.

Some of his recent tests results were so borderline that now I've been told he may not qualify for services ( to which I MYSELF promptly had a panic attack ).

His problem with testing ( I cannot believe this is even a PROBLEM?!? ) ...Is his IQ is on the high/above average scale as well as his receptive understanding being extremly high for his age. So it skews the overall test results. So they expect me to be happy he is so bright, smart etc, but its taking away seriously from the deficits he clearly has in speech and emotional well being.

The teacher/SW at "School" feel like I said, I may be over reacting, yet they clearly see the issue. He went from seperating with no issue to screaming, choking and throwing up in clas s( while I'm holding him even) b/c he wants to go home and screams if another kid looks at him.

Anyway, I dont know what to do?

DO I seek out my own Psych eval? Pay for it or try to go through our health insurance? Wait and hope EI picks it up and gets it right?

Has ANYONE experienced anything like this? Or had a psych eval on a young child?

We are doing everything we can to help him...trying to get him out of the house, exposed to children slowly, praise all the small steps etc.

But its now affecting speech ( returning to gesturing vs. using words). Sleep ( regressing in sleeping inhis own bed, wants to be in ourrs) and even eating ( refusing all new foods, barely eating) .

If you made it this far, Your a saint...thank you.

I guess I just needed to finally get this all out.

Re: I don't know where to turn anymore

I know in my family, when they weren't getting the answers they did independent evals. Be it through insurance if you can or paid for OOP

Re: I don't know where to turn anymore

I read every single word you wrote. I can't tell you what to do, but I will tell you what I would do if in same situation.

I would seek professional help on my own, immediately. I would not wait for EI services. I would first try to go through Insurance and if I was not satisfied with the options then I would pay out of pocket.

Also and PLEASE do not take this the wrong way because I am not pointing blame in any way...but... does Noah witness your panic attacks? I am only asking because If he has witnessed you react to certain situations he may assume that's how to act when upset.

I am sorry you are going through this and for Noah too.

Message edited 4/14/2010 12:18:37 PM.

Re: I don't know where to turn anymore

Donna I read your post.

I wish I could help. The only thing I can think of is taking him to a dr/psych on your own?

We did this with Bry even before we started E.I.

FM me if you want the name of the dr.

Re: I don't know where to turn anymore

I used to work with ED children and EI/CPSE and, yes, they do psychological/psychiatric evaluations that young. I'm not sure you are going to get a diagnosis as he is a bit young to be diagnosed with anything.

You are going to have to be your child's best advocate. Keep pushing for what you believe you need as far as testing. Since you have other services, you should have a service coordinator that should help as well as his other therapists. If he's showing regression and you feel it's more then a phase, keep asking for more. Once he starts with CPSE, you should be able to get a parent advocate that should help.

Re: I don't know where to turn anymore

First off, I can't even imagine how hard this must be, not only on Noah, but on you too.

Do you meet with Tara at Infant and Development? Have you spoken to her about this? I think that I would get your service coordinator to have someone else come in and evaluate him. Did they complete all of the evaluations for CPSE? No one picked up on this?

The anxiety has to be stemming from somewhere, and I am by no means an expert but I'm thinking it has to do with the arrival of the twins. Maybe now everything has set in and is somehow taking a toll on Noah. I think at this point I would call up insurance and look into a private childrens therapist. They will know how to better deal with this and hopefully offer up some solutions.

Message edited 4/14/2010 12:40:58 PM.

Re: I don't know where to turn anymore

Re: I don't know where to turn anymore

I know you are going through such a difficult time. I'm so sorry. I'm still here if you need me.

I would go through my private insurance. I wouldn't wait for EI. It took 2 months for them to come and see Gia for her torticollis and by that time, I had taken her for private pt and paid through the insurance and she was much better so she failed their evaluation.

I really thinkt his has to do with the twins. Matteo was fine for a while but he has been acting up a lot lately. He too doesn't eat some days. However, he has plenty of reserves so it's not a worry for me. He'll eat when he's hungry. I know you can't think that way with Noah. He has also been peeing on the floor on purpose. He pees on himself when he's in time out. Now that the twins are more alert, interactive and taking up more of my time, Matteo's been acting up. You should defiantley seek help. Matteo isn't that extreme so I can deal with it. He's also older so he can express his feelings more. For example, on Easter we were at my IL's. He usually goes there by himself but that day we were there with the twins. He refused to go into the family room b/c the twins were there.

Do you do things jusst you and Noah? Fabio and I try to do something with Matteo at least once a week without the twins. I'll take him to Target. Fabio will take him to McDonalds. My MIL will take him home with her. It's been helping. Let me know if I can help in anyway.

Re: I don't know where to turn anymore

Re: I don't know where to turn anymore

Re: I don't know where to turn anymore

Re: I don't know where to turn anymore

I'm not sure I have much more to add than the other ladies have already said but I can give you some and that they figure out what's going on and incorporate a program into his services to deal with it. I can't imagine how hard this has been on you

Re: I don't know where to turn anymore

i'd also start the processes with insurance and if you can afford privately as well to see what works fastest and it can't hurt to have more than one opinion. what does his ped say?

do you think it may be bc of sensory issues? if he's hypersenstive to noise then this will cause anxiety in social situations and he will cling to you bc you are "safe". children with spd have highs and lows where for weeks and months they can be doing well and all of a sudden their sensory issues seam to peak again.

like the other ladies said it could also be bc of the changes in your family. josh adores zach, always did but started to show some jealousy when zach started crawling and using toys more.

just know that you are doing a great job with noah and he will be ok!

i've also had some of my students get evaled at the cody center and have heard good things.

Re: I don't know where to turn anymore

Posted by dm24angel

Posted by Sweets13

I read every single word you wrote. I can't tell you what to do, but I will tell you what I would do if in same situation.

I would seek professional help on my own, immediately. I would not wait for EI services. I would first try to go through Insurance and if I was not satisfied with the options then I would pay out of pocket.

Also and PLEASE do not take this the wrong way because I am not pointing blame in any way...but... does Noah witness your panic attacks? I am only asking because If he has witnessed you react to certain situations he may assume that's how to act when upset.

I am sorry you are going through this and for Noah too.

he has seen "some" of it, but very very little of it, I make a HUGE effort to remain calm and not "Crazy" in front of him. Especially now that this has become suc h an issue. And believe me I know your not placing blame and if my actions are encouraging/adding to his issues, I by all means would want to know and correct it, so its ok to say what you did.

Re: I don't know where to turn anymore

Re: I don't know where to turn anymore

I agree with the above posters. I would try to do it privately.

Re: I don't know where to turn anymore

Would EI agree to do another Phych eval?

If not, got see your own specialist.

Re: I don't know where to turn anymore

The Hagedorn Little Village School on 107 in Massapequa has an excellent reputation should you decide to pursue anything privately. It is also a SE school but they have private services as well.

Good luck...

Re: I don't know where to turn anymore

I also agree, if someone does not call you back soon, I would go on your own and get it done as soon as possible

Re: I don't know where to turn anymore

I agree with what everyone else has said as well. We did a private psych eval before EI too. We used a doctor over a Stony Brook, who we liked.
Lots of hugs...I can relate to a lot of what you've said!