This is so hard

preggersINschool25

Between the doctor appointments, therapies, endless research, and feeding issues; I feel defeated and exhausted. I never thought when I had a full term healthy baby a year ago that I would be in this situation.

This is so hard!! Anyone else struggling?

JuneBug86

I'm in the exact same boat. Exact!

mightmom13

Yes completely. It's hard to put into words besides exhausted and kind of lonley.

Between being a single parent and non-supportive/ignoring it all parents it is really really hard somedays. I took DD to my counseling appt today because no one could watch her like last time but I didn't want to cancel again...especially now. I did luckily reach out to a local support group.

However, I feel like I am hiding or in hiding. Even though no dx yet (feeding issues here as well with speech, PT, and to begin OT after her eval) I feel like I have been told this is a super horrible thing that you must keep secret. Not from the docs, mainly my family if you will. A few close friends know but 2 are far away and one is a married mom who is busy with her DD a lot.

Today was the first day I was told my parenting has nothing to do with this - my counselor who works with kids too asked me if anyone has ever said that to me and I said no - he repeated it and it kind of makes me feel better. But why am I feeling other's "shame" on this - it is starting to make me mad.

preggersINschool25

Is your support group for moms with special needs kids? I'm finding it hard to know where to look for to find support since we are without diagnosis.

I was thinking about telling my OT who I like that she can give my number and email and personal information to anyone she thinks I might be able to connect with.

mightmom13

preggersINschool25:

Is your support group for moms with special needs kids? I'm finding it hard to know where to look for to find support since we are without diagnosis. I was thinking about telling my OT who I like that she can give my number and email and personal information to anyone she thinks I might be able to connect with.

It is a support group for kids with autism - but they took me in with developmental delays, possible/awaiting a spectrum dx - so that made me super happy....I emailed my situation and just asked to join and the founder was SO welcoming.

I would ask your OT and if you have a daycare or church maybe there too. The ladys in my moms' group knew the founder when I said I was concerned that we do not have a dx yet, but OT added in and a lot of further appointments.

PM me if you would like as I am in IN too.

Jenny952

I'm so sorry you're feeling that way.  I have a dx with my DD, but I totally agree with the pp who said she feels lonely  I feel that way a lot too.  It's hard putting up a happy face all the time when inside I'm freaking out and worrying about DD all the time.  Most everyone in our lives know about DD's condition and we're pretty open about all of her therapy and appointments.... but I also don't feel that I can always talk about how hard it is or how much I worry b/c I don't want others to pity us.  It's a really fine line for me.  I can be talking with my SIL or a friend about how our kids have been sick, and mention that I hate dealing with sickness, and she responds, but you have soooo much else to worry about.  Then if I don't say anything, everyone tells me how well I handle everything.  

Sorry, that got kind of long and rambly.  My point is... you're not alone!

dzappit123

Just emailed you :

JoJoGee

I think the fact that your son just turned one makes things worse. I know I feel most down around Lily's bday. Sure, our birth stories are different, but our children's birthday's trigger us to reflect on the past years, and that can easily heighten any underlying anxiety or depression we may already been feeling, but on a lesser level.

One of the things that I think helps me is that I compile all of Lily's pictures and videos from the past year, and I set them to song. By doing this, I am forced to recognize the good, along with the bad... I think human nature is such that we tend to focus on the bad, and forget the good. So, I believe this gives me a more balanced view on our situation.

But, with all that said, I can't recall how many breakdowns I had in January... There were quite a few. You are definitely not alone. I just hope you are able to find your center soon... I think I'm starting to.

Assembly_Reqd

It will get better. Honest.

Hugs.

lite-bright

I go through phases of struggling. Sometimes my patience wears thin and it's so hard to deal with a kid who starts taking off her shirt when she wants to go to the bathroom -- because she knows she needs to take something off and forgets that it's her pants. Or telling her half a dozen times to put on the boots that she can't seem to see even though they're a foot in front of her. I just want to be like, DUDE, THINK. PAY ATTENTION. The absentmindedness frustrates me so much at times, and it's hard to remember that just because she *can* do something doesn't mean it's easy for her. 

No, I didn't think I'd be here when I had a healthy baby. But I'm in a much better place than I was in the first few months, or even the first year, of dealing with her issues. Like Assembly said, it does get easier with time. We're almost two years out from dx, and having DD1 in preschool is much less isolating than having an infant in general, IME. Your LO is still so young, this is still very new for you and there's a lot of uncertainty. Things do even out more as time goes on, both emotionally and logistically -- in the meantime, don't forget to take care of yourself and make sure you get the breaks you need. Even little things count. Big hugs! 

bumpuser511563

I have days like that, too, sometimes when DS has a bad day.

I would tell some people it's not like people go around and plan that they want a special needs child when they are first pregnant.

I have 6 days of therapy a week for DS now and I wonder if adding hippotherapy would spread me thin with 7 days a week of therapy.

4 of those days the therapists come and visit with us at home on Sunday and the other 3 days they visit DS at daycare. The rest of the week is us driving to appointments.

We can't join any extracurricular activities because therapy takes so much time and energy and I work full time.

I just want to give you a hug!

bumpuser511563

Oh, I did not make sense.

I meant on Sunday the ABA therapist comes over. Mon-Wed therapist go to daycare and work with DS.

macchiatto

Yep. I was so thankful to have healthy full-term twins. I had a number of concerns about Alex, especially from about 6m on, but everything was explained away in the beginning--it's just his personality, all babies develop differently, etc. Then suddenly he was finally getting evaluated and qualified for services in multiple areas. He had 5-7 therapy appts every week for a while and people were tossing around possible Dx like ASD and CP ... I was glad he was finally getting help but yeah, it was draining and overwhelming at times.

preggersINschool25

dzappit123:

Just emailed you :

I emailed u back from a different email address.

Rink08

I am struggling as well.
DH is away for work again, I had to handle DS1's IEP meeting with the help of his therapist which I feel that we failed at, 3 days a week DS1 goes to therapy that requires me to entertain the younger two kids in our van for 2.5 hours, and today I found out that DS2 now qualifies for speech and OT. I'm spent and ready for DH to come home.

BunnyCookie

yes. i'm definitely struggling. i'm so overwhelmed and i feel like there aren't good options for us. i feel like i'm drowning in worry half of the time.

hope things get easier for you soon!