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It has come to my attention that March is Disability Awareness Month. Alright so I am 11 days late! I just could not let it go without discussing it with all of you. You see this is something that personally touches my family on a daily basis. Two out of my three children have disabilities so you can see why I may find it so important. It is something that I cannot to ignore.
Emma has mild, thank God, Cerebral Palsy. As an infant she was not able to move the left side of her body. Drinking bottles and eating were things that she had to be taught how to do. She has had motor planning issues associated with this muscle weakness and has a very weak upper body. This weakness impacts her speech, ability to run and play easily like other kids do and her ability to learn at the same rate as the other children.
As an infant we made sure that Emma received Early Intervention. I feel that it is why she is doing as good as she is. From the time she was 5 months old until the time she was three we would have 7-9 visits from therapists a week. She would also go to a parent tot gymnastics program and counseling was available to anyone in the family. New York really holds their Early Intervention program to high standards and I think that this is the only reason that Emma has done so well.
Today Emma still has some issues. They are certainly noticable to me but if I did not tell you; you would never know. Emma was mainstreamed in kindergarten this year. She is behind the rest of the kids but still showing progress. She can walk and talk although she gets tired much quicker then other kids. She has broken out of her shell this year and socializes with the other kids. I am so proud of how far we have come in 5 years. 5 years ago she could not move half of her body and now she is running with the other kids. Even if it is a few paces behind she is still doing it!
Abigail has an emotional disability which is called bipolar. This has been a tough one. She rages, goes from extreme to extreme and is always angry. In her fits she has told her sisters that she is going to kill them. She throws all of the pictures off of her walls and her books off of their shelves. She even has tried on more then one occasion to jump out of second story windows and has tried to jump out of a moving car. She does not think through consequences and is VERY difficult.
The thing about Abigail that just breaks my heart is that she does not want to act like this. She has cried many times after telling me that she wants to die. She has told me that she tries so hard to keep it together. She has told me that she just hates herself and that she is like this. It breaks my heart.
We just started Abigail on medication. I have read that with bipolar it is about the only way to assure that they will feel more balanced, more like you and I feel. This is a disease that children suffer with. I feel that medication is the same as giving a child medication for diabetes or a heart condition. How could you not treat it. The statistics of the suicide rate is enough to make me want my daughter on medication. Medication also reduces the likelihood of future drug abuse.
So there you have it. The most intimate parts of my life! These kids are everything to me. When I was discussing this with them they had a few things to add.
- Please do not look at me funny. I am a kids with feelings just like anyone else they get hurt. With Abigail I think that they are hurt even more then your average kids.
- Do not be afraid to play with kids who are different. Once you are with them you will see that they are not as different as you thought!
- Be kind and respectful. Even though these kids are not what you would call “normal” they are kids! They respond best to kindness just as any other kid would.
I think that we should all take a little time this month to think about these children and adults. They are still people. Their feelings are hurt with every weird eye people look at them with. They are hurt a little deeper each time! Please educate yourself and your children about disabilities and why it is so important to treat everyone, including the people who are different, with kindness and respect.
Becca
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Becca -
Thank you so much for this. Although I am lucky enough that I have not been so personally touched, I have long been an advocate for people with disabilities (when I taught law school it was the subject about which I did the most writing and awareness raising).
The disability issue that has come closest to me is Down Syndrome. I had my first child when I was 40 and am now about to have another at 42. I have been so saddened by the way so much of the medical establishment approaches the possibility of Down Syndrome in “older” mothers as some sort of a crisis. I truly feel that many women don’t even contemplate having a child with Down Syndrome because the screening is so readily available and they are taught that there is something “wrong” with such a child. Having a good friend with a beautiful, funny, wonderful 25-year-old daughter with Down Syndrome, I just want to cry at the idea that anyone would find raising her a burden.
I admire you, Becca, for doing everything you have done for both of your children — helping them manage their conditions without letting their conditions render them any more “different” than we all are in our own ways.
Thanx for visiting my Blog, Becca.
Love the blog.
Melissa I have to admit that it is not all fun and games in our house but I treat all of my kids the same. I expect the same things from them and they all have the same consequences. I know many people wanted to treat Emma differently as a baby but I was very loud about the fact that she should be just like all of the other kids in the family!
Becca
I didn’t know that March was National Disability Awareness Month! I am a speech pathologist, so I work with kids with a variety of disabilities. Thank you for sharing your stories!
It is so nice that you are really educating your readers and are letting them in on some really personal aspects of your life. I look forward to following your blog.
http://www.doubleplusone.blogspot.com
Jess I stopped by your blog and love it. I look forward to seeing you again! I tend to share personal aspects. It is just who I am and the life I live!
Becca
Abby U have worked with many speech therapists over the past 5 years. Emma has wonderful articulation now and we are just working on vocal volume and processing directions quicker. It has been a journey!
Becca
Thanks for stopping by. This post was beautifully written.
What a wonderful post. Thank you for being so honest and open with us. I think we all need this lesson.
Becca,
You certainly have your hands full. I’m unsure of your faith but I always believe we are not given more than we can handle (even if it doesn’t always feel true). My first born was a preemie. He has gone through alot of physical therapy. Like you, I still see differences, but I’m totally impressed with the whole process. We are thinking of allowing him to repeat Kindergarten since although his IQ is good, he has a late birthday,he’s a boy, and he’s already been through so much. He’s enthusiastic about everything.
Thanks for stopping by my blog. It’s always nice to talk to someone new. You’ve done a great job at raising awarness.
Mary I have to say that I used to believe God only gives you what you can handle. The trouble is that I think we are miss communicating lately. I have a bipolar husband and daughter. I have a daughter with CP and I suffer from depression. It just seems like a lot. God and I have talked about it a lot. He seems to feel that I am holding it all together and doing a wonderful job. I give it up to him and try my best. I am flawed at times but my kids will always be able to say that I truly gave it my all!
Becca
Debbie thanks so much for stopping by. I am glad that you enjoyed this post! I try to write about life as it happens and there is a lot in my life that happens. Please come back again and see me.
Becca
Really, thank you for sharing this with us. I can’t imagine how stressful this all must have been and I’m sure continues to be for you, and yet you’re so matter-of-fact about it. I admire your point of view and your attitude Becca.
Thank you so much for sharing this with us Becca! I can’t imagine that any of this is easy for you or the kids. But it sounds like with faith and strength everyone is muddling through. You will all come out shining in the end!
)
I really enjoy your writing! I am adding you to my sidebar! I hope you don’t mind!
Have a wonderful day and thank you for the comment on my blog!
Becca –
You are obviously handling all that you have been handed with grace and acceptance, even if it’s more difficult than most of us could even imagine. My conversations with my god come in the form of yoga and meditation, when I can stop wondering why and just accept what is; it sounds as if you have often achieved this state of grace. Your family sounds beautiful and the lessons you are learning profound — even if you shouldn’t have to learn them.
Know that I — and the rest of the community I’m reading here — support and honor you.
YogaMamaMe.com
What a wonderful entry.
My son was also in Early Intervention. It was for speech delay and occupational therapy. It was found that he had sensory processing disorder and ADHD. I’m also told he has some autistic traits but doctors keep telling me that he’s too social to have autism.
I agree with what you said about not staring. Sometimes Tommy gets looks because he has certain “quirks.” (Sometimes he toe walks.)
Amber, Emma was a toe walker for YEARS. Now I have her in ballet… I do not know what I was thinking…lol… she falls a little behind the rest of the class but it is a place where she is allowed to toe walk! Thanks so much for stopping by. I hope to see you again!
Becca
KathyB life can get to be a little too much at times but I think what I have done is just accept and do with each thing that comes my way what I can. Thank you so much for your admiration although I do not feel worthy of it all! Thank You!
Becca
Kellie thank you so much for visiting me. I am so flattered that you are enjoying what you have been reading! Writing is my escape. It is what I love to do. I am honored to be on your sidebar. Thank you so much and I hope you visit again!
Becca
oh your little girls break my heart – especially Abigal – good for you momma!
Tiaras thank you so much for visiting. Abigail breaks my heart some days but she is a GOOD person with a GREAT heart. We just muddle through figuring all of this out!
Becca
I have 4 wonderful children. They all have special needs as far as I am concerned. Although only 1 would technically be considered as such. I have had my moments and my days when I just have to lie down and quite frankly, weep. Yet I will always get up and be there. For I know the truth and beauty in my child. All Children are special. Some people just don’t get it. Thanks for sharing so much of your life and your heart in your post.
Lissa thank you for your honesty. I have to weep at times too. Other times my children bring me more joy then I can express.
Becca
Beautiful post. You’ve truly touched my heart. Many years ago I use to work with the physically and emotionally handicapped. It was the most rewarding job I’ve ever had. I agree, be kind to this people. They are people too and deserve the utmost respect. Thanks for sharing your very personal story.
Poor things…it must take quite a bit of prayer and reliance on God to be patient!
Michelle before I had kids I worked in a preschool for children with disabilities. Perhaps it was God’s way of preparing me for what was next. I loved those kids. They are my life!
Becca
Muthering Heights do not get me wrong. We have a lot of fun and are a normal family!
Becca
Becca, I want to thank you for coming to my blog. Secondly, this post hit home for me, because I am physically disabled. Although we never use that term, because I’ve overcome many obstacles doctors said I wouldn’t. My nephew is Bipolar, so that’s close to my heart as well.
If you like you can read my story on my other blog http://www.afiveoh4uplifting.org
Tabitha thank you so much for joining in on the conversation. I think that both of these things are very important because they have touched my life as do you because they have touched your life as well. It must have taken a lot of hard work to overcome the challenges you faced. I was told that Emma would not walk without AFOs and she not only walks without them she runs! I think that the most important thing that I have learned is that they do not know either. They are just guessing. Most of the time their guess is as good as mine!
Becca
this a great post, very touching.
So heartfelt and open. Thank you for sharing your life with us all. I can easily see how much you love your children.
Aly thank you so much for stopping by. I am glad that my love has shown through. The message was important enough to me to address.
Becca
My Emily has Sotos Syndrome. She has emotional, mental, and physical disabilities. The most challenging and rewarding thing of all is to be her mom. HUG
Mother Mayhem I am not familiar with Sotos Syndrome. Now I am going to have to go and research. That is what I do. I look into everything I see and learn about it. I love that you said the most challenging and rewarding thing is to be her mom. I have to say that there are a lot of days I feel that way about Abigail. Thanks for the new perspective!
Becca
Wow… I can totally relate to what you are saying. Though my older son is “normal” our second son is dealing with global developmental delays. We’re still searching for a diagnosis but for now he is enrolled in our state’s early intervention program and gets 5 therapy sessions a week that include PT, DT, OT, and Speech. He has low tone and is delayed in every possible area. Thankfully he is a happy little guy. It is sometimes painful for me to have to answer questions from people wondering why he wears orthotics (he has AFOs), what he’s doing in therapy, why won’t he look at them, etc… and the really hard part is not having a real answer. We still don’t know why he is so delayed. We’ve had tons of blood tests, MRI, EMG… nothing conclusive has been found yet. He was just dropped from our insurance because they claim his delays are a preexisting condition… how can they claim that when we don’t even have a diagnosis? Anyway… This was a great post. Thanks for your openness.
Wani it certainly can be hard. There are a few things to remember. People who have never dealt with it have no idea. That is why they ask. They are looking for understanding. Another thing to think about is how do you have your heart break when you watch your little one struggle everyday and not treat him differently then his older brother. For me this was the most important thing. Abigail used to ask why Emma needed all that she needed and I just said this is how God made her. Then I told her that this is why she is her big sister. She needs to to help her. I will never forget that Emma could not go up the play equipment when she was a preschooler. She was just too weak to climb up the tubes. Abigail found this unacceptable and helped Emma each step of the way. She would place her feet where they should be and help by pulling her up. She has never left Emma behind and makes sure that no one knows that Emma is any different. It is so nice! I was lucky to have a diagnosis at the time. It will come. Just be patient.
Becca
You’re girls are beautiful. And you are one truly amazing mother. It’s so apparent how much you love our girls, they must feel so special. I am so impressed with your family’s strength.
Hello Becca, I suffer from bipolar myself and have been hospitalized twice due to it, seen people that had badly tried to hurt themselves and so on. I cannot stress enough the importance that she takes her medication regularly, as this can help prevent cognitive decline in adulthood that can lead to psychosocial complications, like working disability. Make sure she understands this as there is a high level of non compliance in bipolar disorder patients (about 50% of them discontinue medication at one point and then they end up relapsing). This is a chronic illness, though it is a treatable condition, there are worse things in life. Best wishes for you and your family. Take care, Carlos
Thank you for your insightful article. What was the cause of the toe-walking? Is it related to CP? My son was born at 1 lb 11oz and was in the NICU for 99 days. Every one of those days he had at least 1 heel-prick to take a blood sample. I am worried if this could result in toe-walking but I can’t find any information on the subject.
Thanks again for sharing your experiences.
Hi Becca,
Thank you for sharing your experience with all of us. I found your blog while doing some research on Google and found this to be very compelling. I work for a company that provides disability training programs, so I understand what you are going through to some degree. Keep up the good work and god bless!