I’m going to start off by saying that right now, I’m feeling crummy about myself. Things are good even though I’m not where I should be thank God I’m not where I used to be. But in trying to find a non-crappy photo of myself for an interview someone wrote about me (2 actually), all my self-esteem issues rear their ugly head.
Then in this mad photo search, I find this photostream from Flickr (I’m *finally* back in):
This was New Year’s Eve, 2007, the year we moved here, and Zoe was two. That dress is velvet and taffeta and she wore it with tights and pretty shoes, and her hair up without complaint. The dinner was a bit mature, but the girls were good and we had a nice time. She ate pasta, which she’s always loved, but I don’t remember it being a “cram-down-your-mouth-before-it’s-gone”-fest like it always is now.
And yes, I’ve always said that Zoe had issues from birth. She didn’t sleep through the night til about age 2, and then lost it again another year later. But she’d wear her hair up, and wear clothes even in the house, and mouthed a lot of things but not everything. No, she never caught on about forks and only mastered the spoon about a year ago, true, and jumped at the tiniest noises and toe-walked. Clearly she had sensory processing disorder from birth. I have no doubt of that.
My husband is convinced, though, that vaccines harmed her, and I’ve always opposed this argument. But something keeps gnawing at me, and it’s been eating at me since about 9 or 10 months after this picture was taken.
Zoe’s EI therapist, who she had from age 2-3, who came to our home several times a week and was wonderful, insisted on one of her last visits that Zoe did not have autism. I trusted Sue implicitly when she said this: no professional knew our kid better. But some time later we brought her to a developmental pediatrician who claimed she DID have autism. Now, there is a fine line, but I wouldn’t say it’s splitting hairs…they are two separate disorders from what I’ve read. While a person or child with ASD can have SPD, or should I say, sensory issues, a child with SPD does not necessarily have ASD. (Confusing, right?)
I’m probably just sensitive and reading into this. I’ve been reading a lot about vaccine injury, and I know a ton of parents convinced their children were harmed and trying to find ways to heal their kids on their own (many succeeding, I might add). If she did have SPD, could a vaccine have made it worse? Could it have been something else? Toxins in the environment? The fact that since 2007, we’ve lived directly behind a very active train track? Frakking?
Or does autism just get progressively worse? Don’t get me wrong, she’s very high functioning, and it’s been a hard week with our mini-vacation break, so I never expected Amelia and Zoe to be angels this week. And yes, I’m still freaked out that Zoe cannot tolerate a shirt, no matter what, and strips it off on the bus every.single.day.
I don’t know. I’m just really tired, and not sure where this path is leading. Sometimes I don’t feel up to it, and I know for a fact that it’s not even that hard on us.
UPDATE: Perhaps I spoke too soon. Her sitter told me that yesterday she did not even try to take her shirt off on the bus service to the speech therapist, and today while Chris was talking to a neighbor, she kept it on until he got back in the car. We’re only talking 6, 7 minutes, but when I last I looked 6 minutes is more than ZERO.
That’s how progress goes when you have special needs kids.
debbie T says
awe, Gina, God bless you. I feel for you, but I can’t even imagine the pressure you go through on a daily basis.
I can’t offer any advice, but just wanted to say hey. big virtual hugs coming your way!
admin says
Thanks Debbie, it’s plenty! The big baby inside me just had an off coupla days. Today we went to a psychologist…AUGH. I had tears, but I’m good now.
debbie T says
awe, Gina, God bless you. I feel for you, but I can’t even imagine the pressure you go through on a daily basis.
I can’t offer any advice, but just wanted to say hey. big virtual hugs coming your way!
admin says
Thanks Debbie, it’s plenty! The big baby inside me just had an off coupla days. Today we went to a psychologist…AUGH. I had tears, but I’m good now.
Diana says
Gina, I am a clinical social worker who works as an ABA therapist with children who are on the autism spectrum. I don’t think anyone will ever know if vaccines are to blame for these disorders. My own personal opinion – especially after speaking to the parents of the children with whom I work – is that the children were born with the disorder. It appears that the more profound symptoms of their disorders became prevalent coincidentally with scheduled vaccinations. I think many people feel the need to blame someone, and it’s completely normal. I would like to point out that just because a child is autistic does not mean they’re doomed. I remember one little boy I was working with last year who went from no eye contact or vocalizations to saying “thank you” appropriately, maintaining eye contact and even writing his name (all at age 2 1/2).
The important thing to focus on is working with your child’s strengths and if you and your husband stop to think about them, I’m sure you’ll find many. Link yourselves up with other parents with children with autism and accept that it’s okay to cry or feel overwhelmed.
admin says
Thanks Diana. I am fortunate, I do have a great support group, both of friends with and without kids with autism. Yes, I agree…I don’t think there’s any way to know for sure in certain cases, and I don’t feel too much blame on vaccines for any of my childrens’ issues, BUT I do think that there is more to be said for chemicals/toxins/food that we put into our kids’ bodies. Zoe’s stool test did show yeast, which my doctor told me means some level of leaky gut issues. We’ve finally made the move this week to do a full GF/CF diet because we feel it’s worth a try and we’ve had good results eliminating chocolate from Amelia’s diet, which had a positive effect on her focus, behavior and consequently her academics. I’m *not* looking for miracle cures, or expecting astounding results or anything. But I don’t think it can hurt, especially since they are already on supplements. Worth a shot.
Diana says
Gina, I am a clinical social worker who works as an ABA therapist with children who are on the autism spectrum. I don’t think anyone will ever know if vaccines are to blame for these disorders. My own personal opinion – especially after speaking to the parents of the children with whom I work – is that the children were born with the disorder. It appears that the more profound symptoms of their disorders became prevalent coincidentally with scheduled vaccinations. I think many people feel the need to blame someone, and it’s completely normal. I would like to point out that just because a child is autistic does not mean they’re doomed. I remember one little boy I was working with last year who went from no eye contact or vocalizations to saying “thank you” appropriately, maintaining eye contact and even writing his name (all at age 2 1/2).
The important thing to focus on is working with your child’s strengths and if you and your husband stop to think about them, I’m sure you’ll find many. Link yourselves up with other parents with children with autism and accept that it’s okay to cry or feel overwhelmed.
admin says
Thanks Diana. I am fortunate, I do have a great support group, both of friends with and without kids with autism. Yes, I agree…I don’t think there’s any way to know for sure in certain cases, and I don’t feel too much blame on vaccines for any of my childrens’ issues, BUT I do think that there is more to be said for chemicals/toxins/food that we put into our kids’ bodies. Zoe’s stool test did show yeast, which my doctor told me means some level of leaky gut issues. We’ve finally made the move this week to do a full GF/CF diet because we feel it’s worth a try and we’ve had good results eliminating chocolate from Amelia’s diet, which had a positive effect on her focus, behavior and consequently her academics. I’m *not* looking for miracle cures, or expecting astounding results or anything. But I don’t think it can hurt, especially since they are already on supplements. Worth a shot.
bed wetting alarm says
Oh that’s sad. I know someone who’s worst than your daughter, he can’t even hold spoon. He can’t differentiate money or a liquid as water. I understand handling such kid is kind of a trial God gave to parents. God doesn’t give problems without solution. So the only thing parents can do to love them more than normal kids and keep trying to change them. Although, you can’t but don’t let such a kid feel that you differentiate them from others. Make them feel special.
God bless you and your daughter.
admin says
All kids are special, though, right? Anyway, I have off days and I’d had a bad experience that day, it happens. Not perfect yet, but I’m not sad. I don’t think special needs kids are a trial, though. Something to grow you, something you can learn from but in a way, I think they are very much a blessing. They make you really reassess your priorities about what’s really important in life and in your spiritual life. For that, I’m extremely grateful to be their mom. Plus they love on us something unbelievably!
bed wetting alarm says
Oh that’s sad. I know someone who’s worst than your daughter, he can’t even hold spoon. He can’t differentiate money or a liquid as water. I understand handling such kid is kind of a trial God gave to parents. God doesn’t give problems without solution. So the only thing parents can do to love them more than normal kids and keep trying to change them. Although, you can’t but don’t let such a kid feel that you differentiate them from others. Make them feel special.
God bless you and your daughter.
admin says
All kids are special, though, right? Anyway, I have off days and I’d had a bad experience that day, it happens. Not perfect yet, but I’m not sad. I don’t think special needs kids are a trial, though. Something to grow you, something you can learn from but in a way, I think they are very much a blessing. They make you really reassess your priorities about what’s really important in life and in your spiritual life. For that, I’m extremely grateful to be their mom. Plus they love on us something unbelievably!
Joann says
I was just reading through your blog, I am a certified developmental disability registered nurse and so have an interest in this topic. (many people even other RN’sdon’t even know there is this specialty). But anyway I trust families and mothers who know their kids and I have done home care with families who are sure, that know in their Hearts that their children were fine until their vaccines. I have no scientific backing to this but I believe them. I have 5 grand kids and struggle with vaccines. Our choice has been to delay the age given and the amounts given at a time. I would not try to influence anyone else’s choice. Bot anyway God’s blessings and your children are beautiful wonderful human beings the way they are.
admin says
Thanks Joann, we parents are glad to hear from the professionals who trust us about our kids! Keep up the good work and open mind 🙂
Joann says
I was just reading through your blog, I am a certified developmental disability registered nurse and so have an interest in this topic. (many people even other RN’sdon’t even know there is this specialty). But anyway I trust families and mothers who know their kids and I have done home care with families who are sure, that know in their Hearts that their children were fine until their vaccines. I have no scientific backing to this but I believe them. I have 5 grand kids and struggle with vaccines. Our choice has been to delay the age given and the amounts given at a time. I would not try to influence anyone else’s choice. Bot anyway God’s blessings and your children are beautiful wonderful human beings the way they are.
admin says
Thanks Joann, we parents are glad to hear from the professionals who trust us about our kids! Keep up the good work and open mind 🙂