Tuesday, January 25, 2011
And the Winner is
Lucky Number 1! I'm going to be sending it out to you as soon as it stops snowing here.
Sunday, January 23, 2011
25 Things that Make Special Needs Parenting Easier
Thank you to Love That Max for letting me borrow this! Also, don't forget to sign up for the giveaway that ends tomorrow!
1. Your child's smile.
2. Being unafraid to say "no." As in, "No, twice a week of speech therapy is not enough" and "No, I don't think my child can handle that" and "No, I am not Angelina Jolie, though I do bear a striking resemblance to her, I know."
3. Finding doctors who are good but also kind, supportive and non-jerk-like.
4. Trusting your gut.
5. Accepting that you are not a crappy parent if you don't do every single thing the therapists ask you to.
6. The kindness of strangers (but not the pity).
7. Peach Snapple. Or Diet Coke. Or the occasional glass of wine. Or whatever powers you through.
8. Silly time that cracks you both up and helps you remember although your child may have disabilities, he is not at all fun impaired.
9. Knowing that you are not alone. Blog, comment, post on a message board, join an e-loop, start a support group. There's major comfort in connecting.
10. Having at least one babysitter both you and your child are truly comfortable with.
11. Having a good cry as needed, then moving right along.
12. Takeout. Diapers and prescriptions by mail. Not ironing. Whatever you can do to have fewer to-dos.
13. Roping in all the therapists on a conference call at least once a year.
14. Believing—truly believing—that there is something wrong with the people who stare at your child, not your child. That mindshift alone will save you many hours of grief.
15. A looseleaf binder with Important Papers organized in whatever way makes sense to you. Yes, you will need a hole puncher. Bonus: They're good for getting out frustrations.
16. Time for yourself, out of the house. Repeat after me: This is not a luxury—it's a necessity.
17. Going with the flow. So your child won't leave home without his stack of 20 purple paper cups? OK, then! If it makes him comfortable and it won't get you arrested, do it.
18. Not looking too far into the future when your child is very young.
19. The passage of time. Few things give you better perspective.
20. Having a handy catchphrase you can use when people ask questions that unsettle you. Person: "Is he talking yet?" You: "Yes, in his own way!"
21. Making playdates with other kids who have special needs. Good for the kids, good for you.
22. Asking other parents and experts advice for resources and things—the adapted chair for the dining room table, shoes, apps, whatever—that will improve the quality of your child's life, and therefore yours as well. Also, asking therapists to adapt things in your life (like the phone) so your child can better use them.
23. Your child's kiss.
24. Hope.
25. You tell me.
2. Being unafraid to say "no." As in, "No, twice a week of speech therapy is not enough" and "No, I don't think my child can handle that" and "No, I am not Angelina Jolie, though I do bear a striking resemblance to her, I know."
3. Finding doctors who are good but also kind, supportive and non-jerk-like.
4. Trusting your gut.
5. Accepting that you are not a crappy parent if you don't do every single thing the therapists ask you to.
6. The kindness of strangers (but not the pity).
7. Peach Snapple. Or Diet Coke. Or the occasional glass of wine. Or whatever powers you through.
8. Silly time that cracks you both up and helps you remember although your child may have disabilities, he is not at all fun impaired.
9. Knowing that you are not alone. Blog, comment, post on a message board, join an e-loop, start a support group. There's major comfort in connecting.
10. Having at least one babysitter both you and your child are truly comfortable with.
11. Having a good cry as needed, then moving right along.
12. Takeout. Diapers and prescriptions by mail. Not ironing. Whatever you can do to have fewer to-dos.
13. Roping in all the therapists on a conference call at least once a year.
14. Believing—truly believing—that there is something wrong with the people who stare at your child, not your child. That mindshift alone will save you many hours of grief.
15. A looseleaf binder with Important Papers organized in whatever way makes sense to you. Yes, you will need a hole puncher. Bonus: They're good for getting out frustrations.
16. Time for yourself, out of the house. Repeat after me: This is not a luxury—it's a necessity.
17. Going with the flow. So your child won't leave home without his stack of 20 purple paper cups? OK, then! If it makes him comfortable and it won't get you arrested, do it.
18. Not looking too far into the future when your child is very young.
19. The passage of time. Few things give you better perspective.
20. Having a handy catchphrase you can use when people ask questions that unsettle you. Person: "Is he talking yet?" You: "Yes, in his own way!"
21. Making playdates with other kids who have special needs. Good for the kids, good for you.
22. Asking other parents and experts advice for resources and things—the adapted chair for the dining room table, shoes, apps, whatever—that will improve the quality of your child's life, and therefore yours as well. Also, asking therapists to adapt things in your life (like the phone) so your child can better use them.
23. Your child's kiss.
24. Hope.
25. You tell me.
Friday, January 21, 2011
International day of Acceptance-a day late
Today, January 20th is International Day of Acceptance. It is a day to promote differenting-abilities acceptance and understanding. To mark this day I'm going to share a movie and make promises to my children (and children everywhere).
On this day (after) International Day of Acceptance I am asking that we all support each other no matter what the differenting-ability our children may have. I ask that we celebrate our children's gains and chear them on as they work to make those gains.
We should not only be supporting our kiddies but supporting each other. Sometimes moms or dads of differenting-abled kids need some loving as well. Why not ask "What can I do to help?" instead of complaining if their house is a big neglected? Why not show up with a home cooked meal? You can lend an ear as a mom or dad vents/cries/complains about what is going on. And most importantly not judge.
Please don't forget to enter the giveaway for the book "Don't Call Me Disabled" by Pat Thomas! The deadline is Monday!
Wednesday, January 19, 2011
Looking for a few good writers
This blog is a newborn and in order to get more readers I'm asking for a few people to guest post.
As of now we are also looking to gain publicity in the 16p11.2 duplication and more awareness for what it is and how to treat it. The SimmonsVIPconnect site and a group of us are trying to plan a conference for the syndrome and make it more public. Not many people have heard of it and we're asking for simple things, a name and not a bunch of numbers and letters. We are also asking to have service providers actually know what this is and how to treat it.
Also, don't forget to sign up for our giveaway that was posted on Monday!
As of now we are also looking to gain publicity in the 16p11.2 duplication and more awareness for what it is and how to treat it. The SimmonsVIPconnect site and a group of us are trying to plan a conference for the syndrome and make it more public. Not many people have heard of it and we're asking for simple things, a name and not a bunch of numbers and letters. We are also asking to have service providers actually know what this is and how to treat it.
Also, don't forget to sign up for our giveaway that was posted on Monday!
Tuesday, January 18, 2011
The squeeky wheel
Don't be afraid to speak up if you have a question with a service provider or doctor. Sometimes it takes calling someone and asking a question if you are puzzled. Today we got a phone call from the place doing Chris' genetic syndrome and while I was talking to her about the study things I asked if she could make a recomendation about a good developmental pediatrician. She did one better and contacted the head of the study who is from Columbia University. Looks like we will be headed there in less than 6 weeks!
Don't be afraid to speak up and show your displeasure. We went to a new developmental pediatrician and his recomendations were way off base and upon recieving our report from him I disagreed with most of it. I called up and talkedto the medical records department today who understood what I was talking about. It can be frustrating but it was needed.
We've had issues with the school district and have made countless phone calls, letters, and a call to the state to have it resolved. I may have been labeled the difficult parent for this year but in the end I got what was needed for my boys. Don't be afraid to advocate for your child if you feel it is necessary!
Don't be afraid to speak up and show your displeasure. We went to a new developmental pediatrician and his recomendations were way off base and upon recieving our report from him I disagreed with most of it. I called up and talkedto the medical records department today who understood what I was talking about. It can be frustrating but it was needed.
We've had issues with the school district and have made countless phone calls, letters, and a call to the state to have it resolved. I may have been labeled the difficult parent for this year but in the end I got what was needed for my boys. Don't be afraid to advocate for your child if you feel it is necessary!
Don't forget to sign up for the giveaway of the book "Don't Call me Disabled" that was posted yesterday.
Monday, January 17, 2011
Book Review: All About My Brother
I had a project to do this past spring for a class I had in diversity in language arts where I had to review children's books. After receiving Chris' autism diagnosis shortly before this assignment I looked for a book to review that was about autism and how to explain what it was to children. Along came "All About My Brother" by Sarah Peralta.
"All About My Brother" is a written by an eight year old child who happens to have a brother with autism. It uses technical but kid friendly terms when explaining what autism is, what it can look like, and how autism may affect sibling relationships. I recommend this book to anyone who has a child who is autistic.
Now to launch the new Parent Warrior site...thanks to Genie Girl Graphics, I am doing my first of many giveaways. In 7 days from now someone can be the lucky winner of the book "Don't Call me Special: A first look at disability" by Pat Thomas. I will chose the lucky winner with random.org. To win this book you must first follow this blog. For a second entry you can follow me on twitter . For a third entry, send me a link at parentwarriors@gmail.com for your blog to include in mine. After all, we are ALL here to support each other! For yet another entry, grab my button to the left and put it on your blog. Leave me a separate comment for each extra entry you do.
Thursday, September 9, 2010
Breaking up is hard to do!
So, what happens when you don’t feel like you and your child’s doctor or therapists are on the same page? You break up with them! It sounds so simple but it’s not that easy.
Not every doctor will be on the same page as you with your child’s care. As a parent of special needs kids, you are going to be your child’s best advocate. If you are uncomfortable with a doctor search, ask others, call your insurance even to get a referral for a new doctor.
There have been plenty of times in Iron Man’s short little life where we were not happy with the care and what the doctors were saying. The first Neurologist we saw dismissed my questions when I asked about his development. Iron Man was 11 months and just starting to crawl and was nonverbal. I was told I was over-reacting. He had a seizure and the hospital threw away the orders for his 24 hour EEG. We decided to make a formal complaint against the hospital when they had us wait for several hours and then get upset when the 12 month old little one didn’t want to stay still to have the leads on his head.
The second Neurologist we saw when he was 15 months old saw him for about 45 minutes and uttered these words to us “He’s autistic. We’ll see you in 2 months for a follow up on the MRI on his brain.” then she walked out of the room! Needless to say the husband and I were in shock but made the 2 month follow up appointment as we were told to do. We showed up and she forgot who we were, why we were there, and lost our only copy of Iron Man’s MRI scan that his eye doctor did. My husband and I walked out of that appointment and decided to not go back. We ended up deciding to go to yet a third neurologist. We’re going to be headed back there next week.
As far as the therapists that work with your children? There are a few options. If your child is still in Early Intervention, you can call up your Case Manager and ask for a new therapist. We were told to give it about 3 months before making that determination though. Right around the time I was ready to call about one of Iron Man’s therapists, she quit. She did the dirty work for me.
If your child is in school it’s not so easy. We are starting a new school year for Spiderman, Batman, and Iron Man will be starting next week. I have a feeling that the Physical Therapist that works with Batman and Iron Man won’t be so willing to work with them after the week we just put in with her. We had to start the formal process for due process; we ended up not having to go and Iron Man now has his PT. But I’m afraid my stick-it-to them attitude may have altered her willingness to work happily with the men.
One other important bit that makes parting so much easier is to ask for letters from doctors and a copy of records automatically. I have a file folder on Spiderman, Batman, and Iron Man and when we need to go to the doctors the file goes with us. It makes it easier to go to appointments if you have information with you and if you need a second opinion, you have the records with you.
Not every doctor will be on the same page as you with your child’s care. As a parent of special needs kids, you are going to be your child’s best advocate. If you are uncomfortable with a doctor search, ask others, call your insurance even to get a referral for a new doctor.
There have been plenty of times in Iron Man’s short little life where we were not happy with the care and what the doctors were saying. The first Neurologist we saw dismissed my questions when I asked about his development. Iron Man was 11 months and just starting to crawl and was nonverbal. I was told I was over-reacting. He had a seizure and the hospital threw away the orders for his 24 hour EEG. We decided to make a formal complaint against the hospital when they had us wait for several hours and then get upset when the 12 month old little one didn’t want to stay still to have the leads on his head.
The second Neurologist we saw when he was 15 months old saw him for about 45 minutes and uttered these words to us “He’s autistic. We’ll see you in 2 months for a follow up on the MRI on his brain.” then she walked out of the room! Needless to say the husband and I were in shock but made the 2 month follow up appointment as we were told to do. We showed up and she forgot who we were, why we were there, and lost our only copy of Iron Man’s MRI scan that his eye doctor did. My husband and I walked out of that appointment and decided to not go back. We ended up deciding to go to yet a third neurologist. We’re going to be headed back there next week.
As far as the therapists that work with your children? There are a few options. If your child is still in Early Intervention, you can call up your Case Manager and ask for a new therapist. We were told to give it about 3 months before making that determination though. Right around the time I was ready to call about one of Iron Man’s therapists, she quit. She did the dirty work for me.
If your child is in school it’s not so easy. We are starting a new school year for Spiderman, Batman, and Iron Man will be starting next week. I have a feeling that the Physical Therapist that works with Batman and Iron Man won’t be so willing to work with them after the week we just put in with her. We had to start the formal process for due process; we ended up not having to go and Iron Man now has his PT. But I’m afraid my stick-it-to them attitude may have altered her willingness to work happily with the men.
One other important bit that makes parting so much easier is to ask for letters from doctors and a copy of records automatically. I have a file folder on Spiderman, Batman, and Iron Man and when we need to go to the doctors the file goes with us. It makes it easier to go to appointments if you have information with you and if you need a second opinion, you have the records with you.
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