Hugs. It's easy to get overwhelmed, especially since your DD is so young and the diagnoses are so new. It takes time to get used to the fact that your child is different and to become comfortable with that.
DS has multiple diagnoses: autism, ADHD, dyspraxia, albinism, vision impairment, a chromosome abnormally, and asthma. It's a lot for him and us to deal with. But in truth, For DH and I, DS and all his challenges eventually became our "normal". We have learned to see and appreciate his strengths, his unique perspective, and his unusual way of navigating the world. We've learned to seek out experts how can help and how to advocate for him.
Something that has been very important for us has been support groups, both online and local face to face groups. It's been very helpful to talk to other parents who have been through similar situations and to see how there children have grown and developed. I assume you are working with Early Intervention. Your EI case manager should be able to put you in touch with local parent groups.
Originally Posted by
petesgirl
Thank you everyone, good to know I'm not alone. I just wish I understood what happened. She was (seemed, at least) perfectly normal until she hit 6 months and then things just starting going downhill. She is 10 months old--cant sit or stand, can only hold her head up for a few minutes at a time, has an NG tube because she cant figure out how to use a bottle, has a lazy eye that will probably need a patch and uncoordinated eye tracking--and the latest is a possible seizure disorder!!
Where did this all come from??? She started out just fine...
and the worst is that so far her cognitive development is on par so she will get to go through life knowing she is different than others.....sigh...It just makes my heart break for her.
It's natural to wonder to what caused your child's issues. Sometimes with testing, you can find an answer to tat question. But a lot of families never get an answer to that and eventually learn to move on. You're not there yet, so let yourself go through the questioning, but don't let it consume you.
Your DD is very young, and it's unlikely that at this point the doctors know how things will progress. Try to focus on what you can do to help her now.
I mean this this very gently, but normal cognitive development is never the worst thing. Yes, she will know she is different. But you have a tremendous ability to shape how she views herself and her challenges. One of the parents in one of my autism groups has an email signature that says "The greatest tragedy that can befall a child with autism is to be surrounded by adults who think it's a tragedy" (Ellen Notbohm). I think that can be applied to so many disabilities/special needs. I know you're not there yet, but maybe tuck that thought in the back of your mind and think about it when you are further down the road.
Again, hugs because you are in a hard place right now.
Gena
DS, age 11 and always amazing
“Autistics are the ultimate square pegs, and the problem with pounding a square peg into a round hole is not that the hammering is hard work. It's that you're destroying the peg." - Paul Collins, Not Even Wrong