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I belong to a private Facebook group for parents who have kids with a dual diagnosis of Down syndrome and autism. I think of myself new to the autism world but in actuality, my fourth daughter Evangeline has held the diagnosis for, oh my goodness what has it been? Two years? Although I mostly lurk, the dual diagnosis group has become a place of refuge for me. I find parents sharing their days with one -
Should you throw a birthday party for your child with special needs? When the time is right… YES! We did it. We finally had a ‘friend’ birthday party for our daughter Evangeline when she turned eight years old a couple of weeks ago. I know some of you are probably thinking, ‘why is this even a question?’ I get it. I really do. Of course all kids deserve parties. But for some of us, it
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Everyone, I’m thrilled that my husband Sergei, in the midst of everything else he’s got going on, was able to write a blog post in honor of Mental Illness Awareness Week. A lot of us know that depression is a family illness. I often get questions from spouses of someone who is depressed. Any tips? What can I do? How do I cope? I’ve asked my husband to share some thoughts. Please join me in
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Mental Illness: when you fear you are losing your mind on a weekly basis (As this sometimes occurs, please forgive me if this post comes across muddy. I am not doing so hot today. Also, warning: this post my have some triggers for those who struggle with mental illness.) This week, October 4th through the 11th, is Mental Illness Awareness Week. I knew that I was supposed to post about this because I openly write
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9 Responses
“But most of all, there is love.” I see this you and in your family.
Thank you, Sandy.
[…] Love pushes us to the front of the crowd, living well with a dual diagnosis I belong to a private …read more […]
Thank you sooooooo much for this. My daughter doesn’t have a dual diagnosis, but does have Down Syndrome and while there are so many wonderful things, there are many other things that are frankly, well, extremely hard. Believe you me, we know ALL about hair pulling!! The balance of what to share is really hard to find. And we have to be careful to protect each of our children’s reputation too. therefore, I also tend to err on the side of sharing the good. Anyway, thanks again for sharing – sending a hug.
Thanks, Lisa, for chiming in!
Beautiful sentiment, beautifully written. Thank you.
Thank you, Sara :).
Thank you Gillian for being frank and a light in the stormy world of ours. My daughter has DS and I believe Autism. It has been a very difficult 8 years. I think the hardest part is doing it without any support. My family disappeared and you really learn quickly who your friends are. I have one. I struggle because the DS society makes me feel isolated when they only talk about how their lives have been enriched, how amazing the kids are and though, that is true, the struggles are often times outweighing the positives. The challenges have brought me to my knees in despair and defeat. Many nights I would get her to bed and go on the front step and weep to exhaustion. Of course we can never know this before we have a child so in a very real way we are going in blind. I remember her Father saying ‘What if we can’t do this?’ and I thought well that would be a horrific way to find out. And it is. But I still try my best every day. I adore her beyond words and we have come a long way. Her father left and we don’t see or hear from him very much and that wouldn’t affect us so much if we had a good support system. My advice to anyone who has a family member that is raising a child with needs, be there…help in any way you can. That can make the difference between someone sticking it out and someone giving up the fight.
[…] girls are back at school too. Evangeline was especially ready. The last few days of winter break, she kept taking me by the hand and leading me to the door. […]