litebrite, teacherjulie/ asd moms

Rdmaggie

Would any of you be willing to share your story with me? I haven't figured out how to PM yet, but did figure out how to check mine, if you aren't comfortable posting here.

I'm still really struggling with everything, and I need support. We had our intake appointment with EI/HMG, they were informative and we have an actual eval set for December 4th where a team of 2 ladies and the case manager will come and asses her. We got our paperwork for childrens of Dayton, but not yet for the cincy/behavioral clinic which is where HMG reccomended she be seen.

I'm still really stuck in a bad place, some days are easier than others, 2 days ago marked the first day I didn't break down. My husband is wonderful and supportive but sometimes I think he just doesn't get it. He says with a little help she will be fine....my take is with a LOT of help she will be the best she can be. He does work actively to engage her more but he works 2nd shift and isn't here that much, so typically its just me. I have reached out to friends and family but support has varied greatly. One of my friends made an innocent comment, just trying to segway into a conversation about her own child, but when she said "Wow, I'm glad our appointment went better than yours" (referring to the run around I got with childrens), I really didn't know what to say. Her child was going to the pediatrician for dry skin....my situation is just a tad different. Its like I have to put a filter on my whole life now just to get through the day.

I want to see my dtrs eyes light up when she sees her father, I want her to be around him or me not just when we are playing games or being loud and cartoony to try and get her attention. I know this is long and rambeling but please someone tell me this gets better....

Amy and Jay

I'm sorry you're having a rough time right now. It sounds like we're in a similar boat. My DD was diagnosed 3 weeks ago with PDD-NOS along with SPD and is currently being evaluated for ADHD.

My DH has been very supportive but he travels a lot for work and that makes it difficult. I have good days and bad days. It seems like I randomly break down every few days. We're in the process of the IEP and I think once we have recommendations and specific goals set for her I will feel better, though I still expect there to be a mix of emotions.

I don't have any advice because we're obviously at the beginning of this process but I just wanted to let you know that you're not alone in your feelings. Have a good Thanksgiving and keep us posted :-)

lite-bright

I don't know that I have much advice, other than, you figure out a way through it. The time between realizing something was wrong and getting a dx was the lowest/hardest time for me, because I felt so helpless and overwhelmed. Once we had a dx, it helped immensely b/c then I had something concrete to research (I'm a reporter, I research the heck out of everything; so being able to do that was a relief) and a positive place to put my energy instead of turning everything inward and worrying. 

It's great that you're getting in for an eval so quickly! That's really good. You're going to be in this limbo for a relatively short time in terms of EI services, so that's one positive thing to concentrate on. Soon you'll be able to move forward with getting your LO whatever services she needs, and IME at least, I felt so much better once that started. 

One thing I did in those first few months -- this was after dx, though -- was to keep a notebook. Every day I did at least one thing to move forward/make progress on getting DD1 the help she needed. Maybe it was filling out paperwork, maybe it was calling a couple of therapists and asking lots of questions, maybe it was scanning documents and and emailing them to someone. I kept track of every single email, phone call, etc. When I felt bad that things were taking so long (and we did take a little less than three months to get private services started, between research and interviews and making decisions; school district services came somewhat faster), I'd look back at all the work I'd done and it reminded me that 1) it's a process, and 2) I was doing everything I could & here was the evidence. It was also great on a practical level in keeping track of multiple agencies, private therapy options, insurance contacts, etc. 

I'm not going to lie, it's hard. This is one of those hard things, the emotional adjustment. There's no magical way to be okay with finding out that your child may have a lifelong condition. Everybody deals with that differently, in a different time frame. There's denial, anger, bargaining -- all those steps in the grief process. What I can tell you is that you get used to it, you learn to live in the present and enjoy their triumphs, big and small -- because she will have those triumphs. They may not be the ones you expected, but we celebrate them all over here. It gets easier. You become less raw, maybe just because you can only cry so much, kwim? You learn more about the dx and what it does and doesn't mean in your particular child, and it becomes a new normal. You eventually get to know other people in the same boat, and that helps, too. 

And it does get better. Development doesn't stop, it's different and slower, but it happens. Every kid is different, and needs change over time. In my DD1's case, when she was a baby/toddler, it often didn't seem that she cared whether I was there when she played -- I thought it was b/c I sucked at playing with babies.

Now, she begs us to play (today it was board games). She's thrilled when her dad gets home. She hears the garage door, yells, "Dadda Bird!" (she loves birds right now, so we are all birds) and goes out and runs down the driveway to meet him. She asks me to snuggle with her at bedtime, and comes into my bed first thing almost every morning to climb in and cuddle with me. She spontaneously tells me that she loves me, gives me kisses and hugs, asks to go to the store or the gym or wherever with me. She is an awesome, sweet, affectionate little girl -- who also has autism, struggles with conversations and abstract thoughts, and is markedly different than her peers in terms of social interactions. But never for a second do I doubt that she loves us, her family. 

Every kid is different, to be sure, but I bet you're going to be amazed at where your DD is in, say, a year. Or even 6-9 months. She'll continue to grow and develop at her own pace, and depending on how your evals go, she'll be getting whatever she needs to help her progress. It sucks to be where you are right now, where you never wanted to be and never thought you'd be, trying to figure out what's "wrong" with your child. But we've all been there, and you get past it, and you do get things figured out, and you move forward. 

You may need some professional help, if you're feeling stuck; or you just may need to give yourself more time to process. You don't even have a dx yet, it's hard to move forward when you have that uncertainty and can tell yourself that maybe it's this, or that, or not this-or-that (at least it was for me). I was on a/ds for about a year, starting about six months after we got DD1's dx. I was already past the worst of the emotional processing at that point, but the a/ds helped a lot, made it easier to deal with everything (juggling two kids, with one in therapies, is tough), and I was able to wean after a fairly short period of time. Don't rule out the possibility of meds to get you over the hump. 

I hope that helps. It's late and I'm rambly and tired now.  

Rdmaggie

Litebrite- so much of what you said really speaks to me, down to "sucking at playing with babies". I can remember thinking those things too. One of the comments the EI case manager made was "Wow...she has a lot of toys". That all makes sense to me now, I wanted so desperately to gain her attention and if she so much as smiled at any toy I showed her, I bought it. When my friend brought her son over he would have a blast hitting all the buttons, and climbing all over everything while DD would just sit in one place and fiddle with something (at around 10 months or so). Now she loves all her toys, but has very rigid play- She'll make grover fly and crash 30 times in a row with the exact same scripted statement, with the same intonation. She'll let me read her books but get stuck on "bird, tweet tweet, butterfly" and repeat it over and over and over...I told my husband it broke my heart because it seems like she JUST started really playing with and enjoying her toys but I feel like I have to limit her time with a lot of them now because she gets so lost in repetative behaviors.

I love your idea of a notebook, and I think thats something we should do. I breakdown a lot and think I've failed her in some way, that I let all this happen and DH has had to remind me numerous times that I caught this before anyone else and acted on it immediately. In the heartbreak of it all its so easy for me to forget that I am doing the right thing, I get very caught up in punishing myself. If I let her watch 1 episode of sesame street, or take an hour or so to relax I feel like thats time I could be working with her to help her. But its hard to engage a typical toddler for 16 hours a day, and one thats so easily distracted....

The weather is getting colder now and so our trips to the park are becoming fewer. I hate taking her to the childrens museum because shes a flight risk, and pretty much once she finds the basket of balls all she wants to do is hold them and run from me. I use to try and take outtings like this a lot because I would get depressed being home alone while DH was working overtime (before any of this), but now I get depressed seeing how different she is, and then exhausted trying to wrangle her. I feel like it is so much easier when DH is home and can do things like that with us. I.E. If hes at the bottom of the slide its easier to catch her before she runs back to the picnic area of the park and starts reading the numbers off the buildings...but like you said, I guess with time I'll toughen up and be able to face it all again. I did go to the Dr. right after all of this came to light, and he put me on both short and long acting meds...I was hysterical, up every hour throwing up at night, couldn't eat, couldn't sleep, couldn't work... I'm thankful its not at that point anymore, but I still think both DH and I would benefit from seeing a therapist.

Your repsonse gives me so much hope... I love hearing how your DD runs to meet your DH, that she wants to play board games. I think thats my biggest fear, that DD will continue to regress into her own world and care less and less about us. I know all children are different, and all asd children are different as well, but it gives me hope. Thank you so much for taking the time to make that post.

Rdmaggie

Amy and Jay:

I'm sorry you're having a rough time right now. It sounds like we're in a similar boat. My DD was diagnosed 3 weeks ago with PDD-NOS along with SPD and is currently being evaluated for ADHD.

My DH has been very supportive but he travels a lot for work and that makes it difficult. I have good days and bad days. It seems like I randomly break down every few days. We're in the process of the IEP and I think once we have recommendations and specific goals set for her I will feel better, though I still expect there to be a mix of emotions.

I don't have any advice because we're obviously at the beginning of this process but I just wanted to let you know that you're not alone in your feelings. Have a good Thanksgiving and keep us posted :-)

Yes! I have said that so many times to DH, I just want to know what to do, "How do I help her? is anything I am doing counterproductive?" so many questions... Its like I've been trying my own generic mix of things, using some common sense stuff, but I want guidance from a professional. I want to know what to do, how long to do it, when to stop, etc. I'm afraid of the dx myself, which I know could still be more than a year away just because I don't want to hear it. It doesn't make sense to be afraid of it really, the label could open doors for further assistance, everyone already knows what we are suspecting is going on, she will already be getting treated for it anyway but yeah....I still don't want to see it in black and white.

Thank you for responding, its so good to know I'm not alone in my journey. I feel very isolated in real life these days. I admire your strength having a DH that travels, and having to deal with these challenges. I struggle enough trying to take care of things with DH home in the mornings and late at night.

Hoping you get the answers and assistance you need asap, and that you had a lovely holiday. Thanks again