If you read my last post, you know I was really down about A's language delay. I hate feeling down about it---the fact that she is speaking at all is amazing and a miracle unto itself. I guess it's just that she is doing soooooooo well in every other area of her life (we're getting the feeding tube removed in a few months, she is now walking, she is thriving at school, etc) that when one area doesn't show the same rapid success I get sad.
The thing is, I have to remember that nothing she has done has had rapid success! She is walking, yes, but not until age 3 1/2! It was a long road! And yes, we are getting her feeding tube removed soon, but she had been on a feeding tube since she was 2 days old, and it was a long process getting her to eat, drink and in the quantities it requires to maintain her weight. So why should I expect speech and language to go any differently? She IS getting there....just on her own time frame.
This week, not only did she use the word "are" and "him", but she also answered several "wh" questions, including "which of your friends do you want to see at school today?" and "what was your favorite thing at Sea World today?"
She is on fire....and she is a blaze of glory.
May 15, 2010
May 11, 2010
A gift, just in the nick of time
Although life has thrown me a lot of curve balls in the last few years, I rarely allow myself to feel bad about it. Sometimes, though, I need to throw myself a pity party. Usually it's one of two things that will trigger it: either I'll feel sad about my husband being diagnosed with Young Onset Parkinson's Disease, or I'll feel sad about all of A's health issues. However, the pity parties are few and far between, and usually they don't last very long.
This past week, however, I've been in a bit of a funk. It started last week when our ENT told me that he wasn't sure if A's trach will be removed this summer. I've been holding out a lot of hope that it would be, and although there still is hope (we won't know anything until she goes in the OR this summer and is scoped) I left the visit with a sinking feeling. I desperately want it removed, and the thought of yet another year--or more---is really depressing. It just is.
Yesterday my funk deepened. A's speech therapist (well, the one she has at through the school district...she has another speech therapist paid for by our insurance) told me that the IEP team, which meets in a few weeks, is probably going to recommend a Special Day Class for A next year. They did this last year, too, and instead of placing her there, we put her in an amazing and very well respected inclusion program at a private preschool, where she has been thriving. To me, there is no reason to place in her a Special Day Class...her IQ is right where it should be (smack in the middle) and cognitively she is with it. Their concern is her language delay; in particular, that she doesn't answer "wh-" questions very well. She DOES have both a receptive and expressive language delay, which is caused by many factors. The thing is, while she does have issues answering some "wh-" questions, other ones she is getting down.
I feel that placing her in a class with kids who have cognitive abilities beneath her won't challenge her, whereas I've seen first-hand this year that placing her in a class with kids whose cognitive abilities are at her level or above challenges her...and trust me, this girl is motivated and rises to meet any challenge. The speech therapist's only reasoning for their recommendation is that at a Special Day Class there would be more speech-related activity. However, I am confident that the school she is at, which again, fosters inclusion and strives to meet the needs of everyone, including "special needs", is enough. Plus, she is getting 2 1/2 hours a week of speech therapy, which I am trying to raise to 3 hours a week.
But I digress.
The point is, this week I've been wallowing. I was even talking to one of my closest friends this afternoon and started crying about it. Luckily my friend was able to point out all A's progress, and how amazing she is.
Then, tonight, when we returned from being out, we pulled in the garage and A said "we are home". Usually she would say "we home"....but she said "we ARE home." And when I was getting the kids ready for bed, D was in his room and A and I were in her room next door. And A said, "Where's D? I want to see him". HIM!!!!! I have NEVER heard her use a personal pronoun like that. Sometimes she says "I", but I've never heard her say "him", "her", "she" or "he".
These were gifts. A reminder to me that, like I always say, a delay is just that: a delay. It doesn't (necessarily) mean never. This child will get there yet. I know it in my heart. I just don't always know it in my head.
This past week, however, I've been in a bit of a funk. It started last week when our ENT told me that he wasn't sure if A's trach will be removed this summer. I've been holding out a lot of hope that it would be, and although there still is hope (we won't know anything until she goes in the OR this summer and is scoped) I left the visit with a sinking feeling. I desperately want it removed, and the thought of yet another year--or more---is really depressing. It just is.
Yesterday my funk deepened. A's speech therapist (well, the one she has at through the school district...she has another speech therapist paid for by our insurance) told me that the IEP team, which meets in a few weeks, is probably going to recommend a Special Day Class for A next year. They did this last year, too, and instead of placing her there, we put her in an amazing and very well respected inclusion program at a private preschool, where she has been thriving. To me, there is no reason to place in her a Special Day Class...her IQ is right where it should be (smack in the middle) and cognitively she is with it. Their concern is her language delay; in particular, that she doesn't answer "wh-" questions very well. She DOES have both a receptive and expressive language delay, which is caused by many factors. The thing is, while she does have issues answering some "wh-" questions, other ones she is getting down.
I feel that placing her in a class with kids who have cognitive abilities beneath her won't challenge her, whereas I've seen first-hand this year that placing her in a class with kids whose cognitive abilities are at her level or above challenges her...and trust me, this girl is motivated and rises to meet any challenge. The speech therapist's only reasoning for their recommendation is that at a Special Day Class there would be more speech-related activity. However, I am confident that the school she is at, which again, fosters inclusion and strives to meet the needs of everyone, including "special needs", is enough. Plus, she is getting 2 1/2 hours a week of speech therapy, which I am trying to raise to 3 hours a week.
But I digress.
The point is, this week I've been wallowing. I was even talking to one of my closest friends this afternoon and started crying about it. Luckily my friend was able to point out all A's progress, and how amazing she is.
Then, tonight, when we returned from being out, we pulled in the garage and A said "we are home". Usually she would say "we home"....but she said "we ARE home." And when I was getting the kids ready for bed, D was in his room and A and I were in her room next door. And A said, "Where's D? I want to see him". HIM!!!!! I have NEVER heard her use a personal pronoun like that. Sometimes she says "I", but I've never heard her say "him", "her", "she" or "he".
These were gifts. A reminder to me that, like I always say, a delay is just that: a delay. It doesn't (necessarily) mean never. This child will get there yet. I know it in my heart. I just don't always know it in my head.
May 8, 2010
Thoughts on mothering my daughter
I got pregnant with A when D was about 18 months old. After having such a wonderful experience having a son, I desperately wanted another son, so that I could repeat the experience, plus give D a brother. When I found out in the ultrasound that I was having a girl, I cried (in much the same way I cried when I found out I was having a boy the first time around!) Soon, however, I was excited to have a daughter and experience having one of each gender.
When A was born, things began to go wrong very quickly. When I first saw her, I was shocked by her cleft lip, so it took me an extra few seconds to fall in love with her. Within 30 seconds of meeting my daughter, not only was I madly in love, but was fiercely protective in a way that only the mother of a child with medical issues could feel. I was (and still am) very protective of my son from the get-go, but with A, my mama-bear claws and instincts came out in full-force from the first time I laid eyes on her. I have had to deal with (talk to, hire, fire, and question) many doctors, therapists and teachers in ways that I never thought I could (some good, some bad).
Therefore, A taught me that a mother will fight and advocate for her child, well beyond her comfort zone, if it means getting the best care.
With my son, the only medical care he requires is a vitamin every night and to make sure he gets his well-child checkups and immunizations. With A, I have had to learn to care for a feeding tube, tracheostomy, and clean stomas; learn machinery such as suction machines, oxygen tanks, feeding pumps and hearing aids; and keep a schedule of seeing doctors and therapists that would make most people's heads spin.
Therefore, A has taught me that sometimes caring for a child is scary, but no one could do it as lovingly or as accurately as a parent.
When A was in the NICU for 12 weeks, and we kept getting more and more bad news about her health, I was prepared to bring home, quite frankly, a vegetable. Hearing that she had had a prenatal stroke and that she might be in a wheelchair her whole life (which never came to pass, by the way) made me already make plans in my head to sell my two-story house and buy a one-story. Getting her feeding tube made me fear that she would never eat by mouth (and now she is getting it removed). Hearing that she had no semi-circular canals and low muscle tone made me wonder if she would ever walk.
Therefore, A has taught me that often doctors will give the worst-case scenario, but every child is different and never to give up hope. At the same time, she has taught me acceptance. For example, some things are resolved (like eating and drinking and walking) but some thing will never be (she will ALWAYS be deaf/hard-of-hearing).
Before A was born, and I already had a healthy son, I didn't really think about "special needs". Now, I am very aware of the many needs children have, whether it is physical, mental, emotional, medical or behavioral, and don't see "special needs"...rather, I just see a child.
Therefore, A has taught me that we all have needs, in one capacity or another, and are all in need of special treatment and TLC.
It often takes A longer to learn or do things that come easily to other children. She ate orally at 1 year, drank at 3 years, and walked at 3 1/2 years. She (almost always) works her hardest in her therapies and at home. She WANTS to succeed.
Therefore, A has taught me tenacity and perseverance.
A has taught me so much and I could not be prouder of her. She is my miracle baby, my gorgeous girl, and I'm happy she's mine. I believe we were destined for each other.
When A was born, things began to go wrong very quickly. When I first saw her, I was shocked by her cleft lip, so it took me an extra few seconds to fall in love with her. Within 30 seconds of meeting my daughter, not only was I madly in love, but was fiercely protective in a way that only the mother of a child with medical issues could feel. I was (and still am) very protective of my son from the get-go, but with A, my mama-bear claws and instincts came out in full-force from the first time I laid eyes on her. I have had to deal with (talk to, hire, fire, and question) many doctors, therapists and teachers in ways that I never thought I could (some good, some bad).
Therefore, A taught me that a mother will fight and advocate for her child, well beyond her comfort zone, if it means getting the best care.
With my son, the only medical care he requires is a vitamin every night and to make sure he gets his well-child checkups and immunizations. With A, I have had to learn to care for a feeding tube, tracheostomy, and clean stomas; learn machinery such as suction machines, oxygen tanks, feeding pumps and hearing aids; and keep a schedule of seeing doctors and therapists that would make most people's heads spin.
Therefore, A has taught me that sometimes caring for a child is scary, but no one could do it as lovingly or as accurately as a parent.
When A was in the NICU for 12 weeks, and we kept getting more and more bad news about her health, I was prepared to bring home, quite frankly, a vegetable. Hearing that she had had a prenatal stroke and that she might be in a wheelchair her whole life (which never came to pass, by the way) made me already make plans in my head to sell my two-story house and buy a one-story. Getting her feeding tube made me fear that she would never eat by mouth (and now she is getting it removed). Hearing that she had no semi-circular canals and low muscle tone made me wonder if she would ever walk.
Therefore, A has taught me that often doctors will give the worst-case scenario, but every child is different and never to give up hope. At the same time, she has taught me acceptance. For example, some things are resolved (like eating and drinking and walking) but some thing will never be (she will ALWAYS be deaf/hard-of-hearing).
Before A was born, and I already had a healthy son, I didn't really think about "special needs". Now, I am very aware of the many needs children have, whether it is physical, mental, emotional, medical or behavioral, and don't see "special needs"...rather, I just see a child.
Therefore, A has taught me that we all have needs, in one capacity or another, and are all in need of special treatment and TLC.
It often takes A longer to learn or do things that come easily to other children. She ate orally at 1 year, drank at 3 years, and walked at 3 1/2 years. She (almost always) works her hardest in her therapies and at home. She WANTS to succeed.
Therefore, A has taught me tenacity and perseverance.
A has taught me so much and I could not be prouder of her. She is my miracle baby, my gorgeous girl, and I'm happy she's mine. I believe we were destined for each other.
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