If you have a special needs child,

[Indianamom2]

I'm so sorry. I had no idea you were dealing with so much with such a little girl! While most of DD's challenges aren't physical, she had a lot of invisible issue (major anxiety, ADHD, possible vision/tracking issues, coordination issues, somewhere very high-functioning on the Aspergers side of the spectrum). As each thing was being ruled out and diagnosed and treated (or attempted to be), and we saw specialist after specialist, things got to be so overwhelming. I still remember bawling my eyes out on the way home (by myself) from a meeting with a particular therapist. I was just completely overwhelmed and mourning the way I thought things should be. For a very long time, I just kept telling myself that "at XX age, things will get easier/better". While sometimes that was true, I think it actually made things harder for me because I was in denial about the truth. When I finally accepted that DD was not neurotypical and that every age would have its own challenges, I was able to sort of mourn what I had expected and accept what was and try to make the best of it.

I am not saying that it's easy or that there aren't days (or weeks) when I kind of revert back to the old way of thinking, but as I have had time to process and think through each issue and help treat some (like her anxiety, which with meds is MUCH better), things have gotten to a new "normal" and life has gone on and we're fine. Changed, re-shaped, more sensitive but ultimately blessed.

[JustMe]

Just wanted to send hugs. You are dealing with a lot that happened very quickly.

For now, I think you need to give yourself some time to grief, knowing that you won't always be in this stage. You will find so much to appreciate/value and enjoy about your child and it is important to do that as well.

There are some good article on the stages of grief/acceptance for parents of special needs children. I don't have time to find the best ones right now, but here is one

http://durgastoolbox.com/2013/01/02/...-all-there-is/

[Simon]

That sounds much more extreme than our experience, but we have been on the medical special needs ride for nearly 3 years now. Ds3 outgrew his developmental delays but had an onset of significant medical problems a few years ago. I have posted several times about him because we have struggled so much and it has been such an incredible roller coaster of emotions. Going on 3 years and still no diagnosis and nothing even close. No one even understands what is going wrong. For me, personally, that uncertainty is very, very stressful and hard to deal with.
We've had some similar things that it sounds like you're dealing with (feeding issues, ng tube, and neurological stuff), but have also outgrown some of those difficulties. Most of our treatment plans or solutions have been things we stumbled upon or that were last resort/shot in the dark ideas that turned out to work. Its crazy. Being on the frontiers of medical science is very lonely and frustrating.

I agree with hillview that it helps me a lot to focus on, what can I do right now and how can I prepare for what is coming up next.

[Gena]

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.

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.

[hillview]

Gena you are such a special person your insights are always so appreciated.

[Momit]

Gena you are such a special person your insights are always so appreciated.

I was thinking the same thing.

[petesgirl]

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.



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.

Thank you Gena! You are right, of course, if her cognitive development is fine that is a huge blessing. And thank you for that quote--I love it!

[petesgirl]

Saw a pediatric eye dr today and she thinks DD's vision is developing normally, she doesnt even think DD has a lazy eye and said her tracking looks good.
She does think DD is having absent seizures though, so we will be doing an EEG soon.

[hillview]

good news!!

[DualvansMommy]

Op, I couldn't read and not response. I'm writing to you from the "other side" whose parents were devastated to find out I'm deaf, their 6 months old baby girl. They immediately wondered whether I'll be happy, able to lead a productive life and all the questions you're asking. Plus in addition of wondering where or how I went "wrong" etc. I can't speak to their process of mourning and grief but I know they felt and tried to cope in ways they knew how.

My mum became one of the biggest advocates for deaf girls in my school, became elected to get on the school board as one of parent representatives, while my father was and still is a big champion in research. He still continues to look and read into stuff that may help me to live my life in a world surrounded by hearing people. You and DH will eventually find your niche and roles and in growing into those roles, you will learn your new "normal" for your LO's and yourselves as a family.

I concur with gena in trying to reframe your mentality that your child's disability isn't a tragedy. Hard as it is not to, since I do feel sorry for myself some days even as a adult. But it is really helpful to your sanity and self esteem to your children if they believe from you that they ARE ok and will be fine, however life turns out for them.

My mum didn't think it was possible for me to be independent and working to earn my way in a society that relies so much on hearing and speech. The school audiologist was was just great(!) told my mum due to the fact I was profoundly deaf and therefore would never completely independent. What a champion huh? It wasn't until mum decided to go our nearest deaf club to meet ADULT deaf adults who graduated from my school and only just found relief that I'll be ok. She became good friends with those people, including a deaf man who was the father of 5 children holding down a well paid steady job and the ironic thing is he's what I'd describe as a deaf person without any discernible speech.

Sorry to make it a novel, but I guess I'm trying to say you can make the life you want for your DD. Joining a support group with parents facing the same things and perhaps meet adults with same Dx as your dd too may help you too.

Hugs. Btw big yay on your recent news!


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