In the beginning our blog was all about having micro preemie twins, the many issues that we faced in the NICU and since, related to extreme prematurity. Over the past two and a half years it has evolved, and has become more and more about raising children with special needs.I've gone from constant googling of "micro preemie stories" to looking for children with profound hearing loss, cochlear implants, cerebral palsy, and other moderate to severe disabilities. In looking for others with similar circumstances I found Fiona, who is close in age to my girls and has a cochlear implant. More recently I have found Jack and Moo, adorable little boys diagnosed with CP, who are a bit older than Eden and slightly further along on the CP journey than us. I have also found Dream Mom and Mete, who I have found to be wonderfully kind, supportive, and insightful in their blogging about life as the parent of a child with severe disabilities. I gain my inspiration to be the best mom I can be from these women, and from other parents who have paved the road before me.
I'd like to use this post as a resource for parents out there looking for information and support in raising a child with a disability. If you are a parent raising a special needs child, please comment. Tell me your story, including your child's name, age, and type of disability, so that parents looking can find others dealing with similar issues.
I am also interested in hearing from adults living with disabilities, particularly those with cochlear implants, CP, or who use a wheelchair to get around. I am sure your stories will provide hope and guidance for me, in my quest to be a strong advocate for my daughters, as well as for them in having role models to look up to as they strive to find their places in the world.
15 comments:
Hello Billie and unbelievably gorgeous girlies... I've been nipping in here on and off for a little while now.
My name is Becca, I've got a progessive disorder affecting my connective tissue, particularly ligaments, which means that my joints get less and less stable, which takes my ability to use them with it.
I've been a wheelchair-user sometimes since I was 12 and all the time since I was 18 (3 years ago). Right now I can take a couple of steps with crutches and leg braces but nothing more.
I've grown up with impairment and knowing many other disabled kids - I thought I'd point you towards Nadia (who is rather older than 10 now - in her teens!) and Jemima, two young ladies who both have severe CP and are deaf. Jemima I know was also a micropreemie; I'm not sure about Nadia.
My younger sister Lottie is from the previous generation of premmie babies - she was born at 27 weeks in 1987 and will be 20 this April. She's done well, but her birth and issues resulting from it have affected our family in all sorts of ways.
Anyway, I've rambled plenty. Just wanted to say 'hi', really.
Hey Billie!
My daughter Michaela is a special needs child. She is 9, and has been suffering from uncontrollable seizures since she was 3. Over time, the seizures have caused mental and physical retardation. Once an obviously bright child, she now has an IQ of 40. When the seizures are really bad, she needs to use a wheelchair to keep from hurting herself. She cannot be potty trained, and her swallowing function is permanently impaired, causing her to have a g-tube.
I use my blog to update my friends and family on Michaela's struggle, as well as all the issues that arise from having a handicapped child (like paying for a wheelchair, dealing with Medicaid, physical therapy, etc.). I also talk about my everyday life, and the highs and lows of being a stay-at-home Mom.
Like you, I started my blog to keep people posted, but it's turned into "an outlet" for me. I also like the idea of being a help or support to other parents that deal with Michaela's disorder. That really makes it worthwhile to me.
Thanks for the opportunity to share our story....And for sharing yours!
Hi Billie,
I am the Mommy of two preemies.
My oldest (18 months) was a 27 weeker and although not a micropreemie by weight or gestation, her lung function was that of a 23 weeker due to her complete lack of amniotic fluid for five weeks in utero. She spent 96 days in the NICU and had a relatively easy ride other than long term need for respiratory support.
Today her development is delayed- mostly gross motor and self-help. She is showing some of the classic symptoms of mild (probably monoplegic) CP but we are not going to push for a diagnosis because we feel she is getting the therapy and medical care she needs at this point. We expect that she will walk within a couple of months now that she has some shoe inserts.
My second born is a 28 weeker and is still in the NICU (currently at 37 weeks gestation). Right before Christmas we learned that he has PVL (like Eden) probably caused by some sort of event in utero. Then a couple of weeks ago he was also diagnosed with Optic Nerve Hypoplasia (ONH).
Right now, as you know, it is all a waiting game to see how these conditions will affect him. We are hopeful and our Neurologist says that we should expect spastic diplegia and hope for no cognitive involvement.
There are days still where I feel like my world is crumbling. But mostly now, I just enjoy the baby cuddles. Hopefully he will be home soon... stupid bottle feeding!
Thank you so much for putting your journey out here for me to follow. It helps more than you can know.
Found you and your lovely girls thru a link on Jacqui and Moo's blog and couldn't resist commenting.
I'm guessing that you'd probably class me as slightly further along the journey with CP being that I'm a 25 year old CP-er.
I was roughly six weeks prem (25 Dec, due 8 Feb ish) and i can walk a very very few steps extremely unsteadily without help (I go from furniture to walls etc) or maybe 30 metres with a walker. I tend to use a manual wheelchair 95% of the time however as I can do more from it.
I have a degree in business studies and I am an advice worker who is looking for a new job! I am very very active and have traveled abroad alone, love to swim and have helped to crew a tail ship on a voyage from here (UK) to France. I live alone in a full adapted flat with support for 1 hour four times a week and I love it.
I wouldn't say I am "special needs" as I think that is negative and to me my CP is positive and I'm not amazing, I'm just me. And that's why I blog. Because I want to show that I'm just a girl like any other but one who does it on wheels.
Hi there - I came across your blog and am really enjoying your regular updates, very sweet photos and reading about life from a parent's perspective. I work for an early intervention program in British Columbia, Canada and find that I learn so very much from the parents that I work with. I always appreciate when parents are as open and honest as you are so that we, in the "field", can be reminded of some of the issues you face as a parent. I recently had a book published titled "All Around Town in my Wheelchair" as I found that there were very few books on the market to help teach power mobility skills and very few books featuring children in wheelchairs. You can check out more information at www.miya-piyabooks.com. Just thought you might be interested in this resource. Keep up the great work on your blog. I'll definately pass your information on to families that I work with. Cora (coraboecker@telus.net)
Hi Billie
My daughter was born with a rare syndrome called Jacobsen Syndrome. I came across your blog while looking for help on special needs children (I think it was through Tertia's blogroll). Anyway my daughter passed away in March last year but I still find myself very involved with special needs parents and children. I love to read your blog and I especially love the photos of your beautiful children. I belong to a special needs group and started up a blog for the group(www.kidsgroup.blogspot.com) but must admit I have not been as good at updating it as I should have been over the last year. I do plan on putting more links on it to any place the people in the group might find helpful and I hope you don't mind if I link to you. Keep up the good work with your lovely girls.
Hi Billie,
I have talked to you briefly before because my son Ashton has cerebral palsy/dystonia and is also going to be getting a cochlear implant. He is also -7 in both eyes and just got glasses.
He was born at 24 weeks weighing 1lb9oz and spent 227 days in the NICU, home for only four days and then PICU for another month.
I can't even begin to list the problems that he had in the NICU. In short, he had a PDA, BPD, septic three times, eight blood transfusions, group b strep, bacterial infection unknown, domperidone toxicity, unknown spells of sats and h/r to the 20s, three codes in NICU and one in PICU.
He is now on gj feeds 20hours/day, using hearing aids and his cute new glasses.
I would love you to add him to your "special" kids. I have Holland and Eden on my page...
thanks Billie!
I just noticed I never gave you Ashton's site...and for some reason the comment is anonymous. Anyways, it is
www.ashtonjeffreykaden.blogspot.com
I found your weblog through Tertia's site, and I noticed that you're interested in making contact with people with CP/who use a wheelchair. It's actually my (non-blogging) husband who has CP (spastic diplegia), but if you ever have any questions or otherwise want to compare notes, just drop me/us a line! FYI, my husband's in IT, and he's worked in Japan as an English teacher and later for a foreign company that required him to travel quite a bit. Right now he also does some overseas travel - last year he and his scooter traveled to Albania and Bulgaria (basically, he can walk for short distances with a cane [not so much without, ever since a couple of surgeries he had as a child], but he uses a motorized scooter to get around most of the time). The overseas travel takes some planning, but he does it as often as the opportunities arise.
Hi Billie ~
I've been reading your blog for so long that I don't remember how I found it. :-)
I have multiple children with special needs. Their challenges include autism, Asperger's, PDD-NOS, chiari malformation type 1, tethered spinal cord, spina bifida, cathing, & eating via g-tube.
I think you're an amazing writer & your attitude and thoughts about raising SN kids often mirror my own (though you express things much more eloquently than I do).
Thanks for sharing your girls' story with the blogosphere!
Hi Billie.
My name is Hope and I am a mom of twins that were born 5 weeks premature. My daughter started having developmental delays at 6 months of age. At 12m she still cannot sit, roll, bare weight on her legs, or grab toys. She is not vocal, and has eating difficulties. She has positional plagiocephaly along with strabismus in both eyes.
Just recently she was diagnosed with hypotonic cerebral palsy due to brain malformations (open insulas, small corpus callosum, borderline enlarged ventricles). Her brain malformations are believed to be genetically caused. We are following up with a geneticist along with the physiatrist, neurologist, etc.
We live in a small town with limited resources and little family support, so day to day living can be rather stressful. I'm fighting for my daughter to recieve the health care she deserves while remembering to take care of myself along the way.
I wanted to say thank you for sharing your incredible story. Eden and Holland are absolutely gorgeous and v. v. lucky to have a mom like you.
hi billie,
i am the mom of 18 month old b/g twins. they were preemie at 33.5 weeks. they both had a nicu stay, but my daughter ariana was more severely affected. she started having seizures at 12 days old, and was discovered to have a grade III IVH. Her platelet count was impossibly low, so they told us she might not make it. They then discovered that she has 2 clotting disorders, causing her IVH to clot off and cause her to stroke. Ariana now has CP. We work with her all the time and are constantly breaking boundaries that they told us she would never cross, but it is a slow process and at times very discouraging. Her twin brother is a pretty typical boy, except for some low tone issues.
We are expecting our 3rd child in a couple of weeks. She too, was discovered to have a birth defect called a transverse limb defect (missing a left hand and arm below the elbow). They attribute this to the clotting disorder as well. Anyway, thanks for listening. We'd love it if you would link us to your blog, as we could really benefit from all the support and prayers of this understanding community. Thanks :)
Elisa
Hi I have been googling Reye's Syndrome. I had it when I was 7.
A little bit of my story I was not suppose to live the night. I still have a slight speech problem and
my reflexes are not as fast as someone who never had it. My warning to parents Do Not Give A Child Aspirin products because of Reye's Syndrome.
My full story is on Sherrie's Miracle blog.
Great blog - cute girls! I just discovered your blog in my research to find more blogs about parenting kids with CP/special needs. My 6 year-old stepson has CP and we got him a bike last spring and it was an amazing experience for him and for us. It inspired me to start my blog and to look for more opportunities for him to be active, to ride his bike, to do more normal kid stuff.
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