Psych eval update

iVillage Member
Registered: 03-27-2004
Psych eval update
4
Thu, 11-18-2004 - 11:28pm

I was supposed to have my 18-month-old son Adam evaluated today by a clinical psych through EI to see if he falls on the spectrum or not. My husband stayed home today to work from home- a big deal for him. I put Adam to sleep early so he would be awake by 10:30 a.m. for the eval. Then I got a phone call from the psychologist two hours before the eval. canceling the appointment. She sounded like she was in tears indicating that her daughter is in the ICU. She has been for several days and has no diagnosis. She said that she had been planning on returning to work today, but just feels like she would not be all there mentally. She indicated that she wanted to make sure to give Adam an accurate diagnosis. While I appreciate that and feel badly for her personal family situation, I am extremely upset that the eval was canceled and that she couldn't call me last night to cancel so at least I would have had some advanced warning and my husband would not have had to stay home at work. She is the owner of this agency that has two psychologists. I don't see why some type of accomodations couldn't have been made to send one of them to do the eval since there really was advanced notice.

I called her secretary and the next date Adam can be evaluated due to our own travel plans and her schedule is December 7th which although not really that far away, feels like an eternity already. We have been waiting at least three weeks for this appointment and now it is even longer. I'm just getting more and more stressed out about whether or not he is on the spectrum and it is really starting to affect my sleep. We have to go away two days after Thanksgiving- Sat. to the following Thurs.- to Arizona with Adam to see my in-laws because my husband has a work conference there. I'm extremely stressed about this trip too. I'm dreading the five and a half hour flight there and the two hour time change. Adam needs to sleep like clockwork at his regular times and eats at regular times and becomes absolutely crazed when his schedule is changed in any way. I'm particularly not looking forward to going with this diagnosis uncertainty hanging over my head. My in-laws who hardly ever see Adam are extremely dismissive of his issues and love to say he is absolutely fine because all their grandchildren are brilliant, or something to that effect. I think they just think I am basically neurotic. Maybe they'll start saying something different this trip because now that he is getting older, eighteen months, he is expected to be doing more than he is, with respect to language, etc. His arm flapping and toe walking are kind of obvious also so we will see what they say about that. I will kill my mother-in-law if she starts to brag about her other grandson who is about six months younger than Adam. He is their daughter, the favorite child's son, and lives in Colorado so they seem him much more frequently. In fact, they will just have come home from spending Thanskgiving with them so I'm sure my mother in law will not be able to stop bragging about his latest feats and comparing him to Adam. I really may have to say something this trip that I don't like when people compare Adam to other children as he is obviously delayed. We will see.

My husband thinks I need to see a therapist already because I have been getting so stressed over what is causing Adam's issues. I have always been somewhat of a control freak and it is really beginning to get to me to not know what is the root of his problems. I know on some level that I am and have been doing everything possible with therapy, etc. to help him and he has made a huge amount of progress from where he started. However, that still doesn't stop me from worrying that maybe he isn't getting enough or the right therapy that best would help him. It also doesn't stop me from worrying about what issues Adam will struggle with later on.

I also have been considering getting pregnant again relatively soon. However, my husband thinks I am way too stressed to even consider doing this anytime soon. He thinks I need to learn some relaxation techniques to help deal with my stress. It is very easy for him to say this. He doesn't observe the therapists working with Adam all the time and seeing his various issues compared to other typically developing children one sees in the mommy and me classes. I really should be grateful at all Adam's progress, especially recently, and that he does not have even more severe issues. However, I can't quite seem to stop focusing on the things that he doesn't do yet. Maybe therapy would be a good idea for me. I wonder if I could get a therapist through EI for myself.

Sorry for rambling on.

-Debbie

iVillage Member
Registered: 09-20-2004
Fri, 11-19-2004 - 1:51pm

Debbie,

I'm sorry that your going through such a hard time. That stinks that your sons psych. appt. was cancelled (we had to drive two hours to get Gabriel's) I know what a big deal it is. If it makes you feel any better - I think we all could benefit from a little therapy. Noone really understands how emotional it is having a special needs child.

As for having another child - we have a younger daughter (they are 23 mos. apart) and yes it was hard, but I wouldn't change anything. She fits right in (she goes to his therapy with us)and his Gabriels playmate. G/L with everything that is going on right now. Lots of Hugs!! Let us know how your little guys appt. goes.

Kim

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iVillage Member
Registered: 11-16-2004
Fri, 11-19-2004 - 2:34pm

Debbie, I would be upset too. It sounds like she didn't plan on cancelling on you so late, but I would have like a phone call the night before too. Try not to worry too much about your inlaws. For a while we didn't tell mine we were taking Marissa for OT. They don't see them all the time (mine are out of state too) and it is hard for them to understand.

Oh, and I totally understand how hard it is for our kids to travel! I dread taking Marissa away, but it has gotten much better. I hope it is easier for you this time.

I have tried therapy (it was for me to deal with Marissa's issues, so actually her therapist) but it didn't help me. It wasn't a good therapist fit for me. She didn't understand sensory issues at all so it frustrated me. I do think good therapy would be good for anyone under these stressers.

((HUGS)) and hope you have a good pleasant trip.
Michele

iVillage Member
Registered: 04-07-2003
Fri, 11-19-2004 - 4:33pm

Debbie, I'm so sorry to hear Adam's eval appointment was rescheduled for a few weeks later at the last minute. That must be very frustrating. You have every right to feel that way. I'm sure, though, the woman didn't mean to put you in that situation. She might have wanted to go through with the appointment (and didn't really think it out because of her DD's condition), but decided at the last minute it wasn't fair to you or your son because she was distracted or maybe the appointment just slipped her mind until the last minute, etc. Consider her mindset - DD in ICU and they don't know what's wrong. Sounds very scary.

It is really hard not knowing what might be wrong with one's child - it's been very frustrating for us because my son's feeding issues often are really severe (especially right now) and it's very stressful for us to see him act so stressed during a feeding. As mothers, we feel we should know what is wrong with our child and fix it or else find other people who can. I myself am even wondering if I have made my son's SID worse or at least not better than it should be - but as they say, hindsight is 20/20.

I know it's hard, but a few more weeks won't harm your son. If he needs more help, you will find out - it will just take a little longer. As for worrying about his future, it seems like you're the type of mother who will do her best to ensure her son has the brightest future possible. And none of us know what the future has in store for our children or even ourselves - that can be a good feeling and a bad feeling all at once. Sometimes you just have to take things one month, week or day at a time. And, kids are very resilient when it comes to overcoming challenges.

As for therapy for you, you could look into whether there are any support groups for parents of special needs children. They might be free and are a good source of support. I've been in support groups for other issues in the past, and they helped me feel not so alone and helpless. If you want individual therapy (which I've also had in the past), you could check to see what your health insurance covers. There are also counseling places that have sliding scale fees.

Regarding your upcoming trip to your in-laws, are you staying with them? If so, you might see about whether you and your family can stay in a hotel to limit the amount of time you spend with them. I really hope the trip goes OK for you.

I, too, want to start TTCing for a second child soon. My original plan was to start doing that now. But with Kyle being evaluated for our EI program, I think maybe we should wait a few months until things feel more on track. (I think I and DH both need more time to process our son's SID diagnosis.) Maybe you just need a little more time - at least until after Adam's eval and any new treatments that might begin.

I hope I haven't upset you with what I've written. I wish the best for you, Adam and the rest of your family.

Hang in there,
Michelle and Kyle (17 months)

iVillage Member
Registered: 11-01-2004
Sat, 11-20-2004 - 7:46am

Debbie, wow!