No diagnosis, so frusturated!
mommy06
member
Hello all,
I don't post much. I lurk all the time though. My dd is 16 months and we still have no diagnosis. She is delayed in just about everything. Shes not walking, crawling, or babbling/talking at all. We have seen every specialist under the sun and still have no answers. She is making progress, but it is slow. I have been very good about putting on a happy face for everyone else, but to be honest, I just want to cry ALL day! I see other "normal" one year olds and have to swallow my tears and smile. My 5 year old is starting to notice her sister is not doing what other babies are doing. I don't even know how to explain things to her. Luckily, she accepts our half a$$ answers, but I am sure that wont last long.
UGH! I am not really looking for answers, and I know I am not alone HOWEVER the world of special needs can feel so lonely sometimes. I have wonderful friends, but it just seems that no one REALLY understands. ((SIGH)))
Sorry for the pitty party, I am just feeling a little down today!!
Anyone else in my boat with no diagnosis? I am trying my HARDEST to take it one day at a time but that is about the hardest thing I have ever done in my life!!!
Re: No diagnosis, so frusturated!
Hang in there. It does get easier. We do not have a diagnosis, either. There are a lot of us out there. It has helped that DS goes to a SN day care, and I have been able to bond with several moms there. I started to realize that even though they may have a name for their kid's condition, otherwise our daily lives are often pretty similar and we can relate about a lot. And when it comes down to it, the DX is words on paper. It does not change the journey our child is on.
It takes time to get to this place emotionally, though. I have been where you are and it is awful. Try to take care of yourself. ((hugs))
It took us until DS was 16 months to get a diagnosis. He has a very rare mutation on his x-chromosome. And to be honest, even having a diagnosis for us doesn't mean much. It's made it a bit easier to get EI and get DS2 evaluated. It also seems to get dr's to take us seriously when we discuss the children.
But it's very rare and there isn't much known about it or even how to proactively parent him for the future.
I think having someone else in your life with a child with SN that can empathize will really help. Despite how good my parents are with DS and that my mom had a difficult time raising my brother (he had some mild issues) it's hard to believe she can truly empathize with how I feel. We've got a new pedi now who has a daughter with DS and it's helped a lot. I used to leave our old pedi frustrated, I basically just called the specialists I thought would hep because he said repeatedly "well that's out of my realm, I'll investigate who to go see". and now I feel like i have someone who can truly understand how it feels.
I feel this way, too, sometimes. My son has a bunch of diagnoses but we don't yet know (and may never know) how they are related.
But, the most important thing, as prior posters have said, is that your child gets the therapies needed for the issues. And it will get easier, esp. when you watch your child make progress.