Last summer ended with Bridget dancing on the beach. It was a hard fought victory for her to overcome her fear of the beach. A video I personally never tire of (sorry if you have!) watching:
Last year we never got her shoes off or for her to actually touch the sand on her own. The accomplishment was her walking on the beach (or dancing) or sitting in my lap as the waves rolled by us. Continue reading
Last week I was late and well, I’m still technically a week behind the postings. This week’s prompt in the Summer Blog Hop Challenge: Talking Raw, Talking Real: Challenges Related to a Disability.
I kind of wish Boo could write this post. Or Abby. I bet they would say, Challenge? What Challenge?
The truth is, though, loving a child with a disability doesn’t mean you do not see their challenges. They are pretty out there. If you see Boo you might say her challenge is communication. Or motor planning (then you didn’t see her climb on the counter and remove all knives from the strainer to get her Sophia cup).
As I am unsure how Boo would perceive her challenge, I will explain how being a parent of a child with a disability presents a unique situation.
The true challenge related to Boo’s disability is that sometimes I am not sure if I am dealing with her disability or if I am dealing with toddler-like behavior. I waffle with pushing too hard to not pushing enough. I make allowances where maybe I shouldn’t.
I wonder when I pick Boo up and carry her am I doing it for her safety, because she cannot walk that far or am I doing it because it is just easier?
Searching for schools, daycare centers, camps…a whole other challenge. Recently I was talking with a friend whose son has a cardiac condition. She was sending him to “real” camp for the first time. Not a special needs camp. Not a camp that was prepared to deal with health concerns. When you have a child with a disability every decision you make is important. In P’s case if her son has a cardiac event will the camp be prepared with how to help him? In Boo’s case if we decide to send her to camp will they understand she wanders? That she has a sensory processing disorder which may make activities difficult for her. That she turns blue if chilled and red/clammy when overheated. Each decision we make has direct impact on our child, the other children in the school/daycare/camp and their caretakers. Unlike Abby where I basically drop her off in the morning, P will have to make sure that she reiterates every day what to do in the event of an emergency.
That is something a parent of a “typical” child never ponders.
We worry more. Sorry, but we do. I worry more with Boo than I ever do with Abby. Every decision we make we have to balance on: is she safe, is this challenging enough, does she have enough support? I research every activity she does before it happens.
Abby? Not so much. She wants to start riding, okay let’s go to XYZ barn. I knew nothing (and still do not) about horseback riding. I didn’t even know we should choose a style. Boo on the other hand? I never would have allowed her to begin riding without doing a few hours of research on the best type for her skill level.
It is hard to define the true challenge as it relates to Boo’s disability because she doesn’t have just one disability. Our challenge becomes balancing working with her disabilities while determining what is typical behavior.
Even if it means we worry more.
Welcome to Throw Back Thursday, the Blog edition. A walk back in time to before any one read Undiagnosed but Okay. I hope you enjoy the trip!
(Originally posted 12-JUL-2012)
Our friends have a house at the beach. Every year we go and freeload for a couple of days. Abby is always excited to go and so am I. Who doesn’t love a beach house? Cocktails, sun, sand, surf and a clean bathroom you don’t have to share with strangers.
Boo would rather be in occupational therapy. She hates the beach! The past couple of years have been torture for her. Last year was probably the aha moment where I realized that Boo not only had sensory issues but that they could and would be paralyzing.
This year was much easier for Boo. During low tide, as far from the water as possible. She stood on the hard-pack sand!
All Abby wanted to do was surf. Even crazy puppy got in on the action (Boo was no where near the water, preferring to stay at a safe distance!). As the tide came in, Boo felt that it was safer back at the house, so she stole Allie’s board…
But Boo spent the day at the beach and was content to go home and relax with her pup. We are going back this weekend. We hope to get Boo a little closer to the water!
What happens when you begin to lose faith? In perspective we haven’t been on this journey long. Five years is nothing when compared to other children’s battles. Having a child undiagnosed with unexplained ailments compared being a parent whose child is fighting a life threatening illness is insignificant in comparison.
I apologize to all who read the Dr. House post and the Poor Me post. I promise I am not just regurgitating, or wallowing. I was just hit, yet again, by the bat that is a doctor who passed the buck.
I feel foolish and selfish for even getting upset. Let alone discussing losing faith. I try to keep this blog upbeat and fresh. I hate wallowing, repeating myself. But I am struggling. I am second guessing myself. I am wondering if I am the mom who cried wolf.
Why am I upset if not one of the five doctors I have contacted do not think it is significant or alarming that Boo is having swelling in her arms, hands, feet and legs?
So what do I do when I begin to lose faith? I get pissed. Seriously pissed. In all honesty I also had a healthy cry, a text-fest with Tia and a glass of wine. Maybe two.
But I got pissed and I decided that it’s not okay. I’m okay with Boo being undiagnosed but I am no longer okay with cardiology telling me to call rheumatology who tells me to call the cardiology who tell us to have our Pedi order a test.
Which she does and then that test is cancelled by radiology who doesn’t think it is necessary.
Because really, why should we investigate why a child is having intermittent swelling in their extremities for no reason?
So I got pissed. I did some more research (cause I have spare time) and found another specialist to contact. I am making cardiology see her next week and not leaving until he refers us some where. Any where.
I have reached out to two different “Dr. House” type doctors that are not local but I don’t care. I have e-mailed yet another doctor whose blog I read to ask for a recommendation. I found through my own searching of Children’s Hospital a center that deals with disorders of the vascular system.
I am not giving up. I am not crying wolf. I am not waving the white flag.
Some day. Some how. My child will have a doctor look at her as a whole child and not say call another doctor who will then cancel a test.
Just because her various ailments are not deadly doesn’t make them any less significant. They just make it easy to put into perspective. I know what Boo is experiencing isn’t life threatening. But it is impacting her life.
And that’s enough for me to get my big girl pants on.
Some people lose faith and curl up in a ball. There is nothing wrong with regrouping. Me?
I get pissed.
Thank you to everyone who reached out last week. Who gave me ideas, support and were just there being my village. I am using all of the tools you give me to stop wallowing and instead remembering the warrior mom creed:
Okay, if it’s not our creed it should be.
A few weeks ago I wrote about a new program at Abby’s school that celebrated Special Needs Awareness Month. I had to take down the children’s challenges as the program had ended (I did save a few) but thought you might like to see how incredible this project turned out.
We incorporated celebrities who are outspoken about their difficulties and placed the students (and others) challenges above, below, next and over them.
Each week the poster of the celebrity changed, but the children’s never did. To show that you might always have a disability, but you will always be you.
Then the kindergarten teachers took our idea and blew us away, having the students draw their challenges.
I am overwhelmed by how honest and forthcoming the students were. There were so many honest conversations at home, at school and on the playground.
This video was shown on World Down Syndrome Day. The one response from the kids? They wished it showed all disabilities not just Down Syndrome. But they understood the message: your friend is your friend. It’s as simple as that.
I would like to thank Abby’s school for taking on this month long program and simply rocking it. The Challenge will be back next year and in more schools. I cannot wait to see how the kids evolve.
The best decision I ever made was one I never would have, if given the choice. People make choices all the time. Those decisions have unknown consequences and unknown victories.
Had I been told while pregnant that Boo would be admitted to the NICU on her fourth day of life, that we would be told her brain was not developed and she would never walk, talk, jump, love or progress. That five years later she would still be proving to be a medical enigma, I may have made a difficult decision. I would have thought I was making the best choice for myself and my family.
I would have been wrong. So wrong.
Doctors don’t know everything, testing is not always 100% accurate. The doctors for boo were well-intentioned, but they were wrong. Yes, Boo hasn’t had a tranquil childhood. I have had fears that she wouldn’t survive. Fears that she would never have a life like Abby’s. I worried, lost sleep, became a master at using Google to find remedies, treatments and novel ideas. I became a warrior mom, an activist an optimist.
I broke and continue to break.
Every time I break I think of that Fellow who didn’t believe in her. That did not understand the absolute power of a warrior parent. I remember that moment and am thankful for those broken moments as they make me appreciate how unbroken Boo really is. Being unbroken means there are a lot of decisions to make.
The decision to bring her home from the hospital and not let them define her.
The decision to send her to a daycare that loved her, that transitioned to a school that adores and supports her.
The decision to allow surgery (or not).
The decision to provide intensive therapies when we were told they were too much for her.
The decision to let Boo defy expectations, not once or twice.
There are a lot of decisions I make with Boo. Some large, some small, but all must be thought out, researched and agonized over. Yet there is one decision I never had to make and am so thankful the choice wasn’t offered.
I realize that best decision I ever made was one I didn’t have to make.
Is she going to be retarded? I asked the neurologist. Boo was 11 months old. She had two EEG’s and an MRI of her brain. They told us she had a “slow” brain pattern. That her development was delayed. That Boo would possibly need care for the rest of her life. That they don’t use the word retarded any more. They use intellectually delayed.
I had moved from wondering if Boo would live past her first week of life to would she be retarded in 11 short months. It took another year for me to evolve from retarded to delayed. To understand and feel that a word is not just a word. That it matters what you call people. Here is why that revolution matters.
The Merriam-Webster Dictionary defines retarded as “sometimes offensive : slow or limited in intellectual or emotional development”
Why is this “sometimes offensive”? After all the definition simply states that Boo is limited in intellectual or emotional development. That is true. That is not offensive. She is limited. What is also true is she is gaining. Limited does not mean stopped.
Here is why the caveat of “sometimes offensive” the dictionary also defines retarded as: stupid, obtuse or ineffective.
My daughter is not any of these. She is not slow, anyone who has had to chase her down a hallway in her attempt to escape knows that fact. She is not stupid. The moment you meet her you see the spark in her eyes. Boo is not obtuse. She is sensitive and caring. Boo is not ineffective. The change she has made in my life, her classmates lives and some of yours disproves that definition.
Words have power. Would you say nigger or faggot? No. Because you know in uttering those words you are hurting someone. So why is retard exempt? Because it is part of your vernacular, because you have always said it, insert an excuse here.
Last year during this campaign people told me that the word isn’t used often anymore. That this is an older terms those of us from the 80’s use. But that is untrue. It was used last Thursday in Abby’s school. The administration used a video depicting dyslexia. Overheard in the assembly of middle schoolers: they are just retarded and dumb. Whispered, of course. They knew the word was wrong. They knew the word was insulting.
They used it anyway.
When I asked the neurologist 5 years ago if my daughter would be retarded, I wasn’t being insensitive. I was not being derogatory or insulting Boo. I was uninformed. I was ignorant of the harm and tears this word can cause.
Maybe you can use that excuse too. You were uninformed. You didn’t know that a word could hurt. Then you met Boo. Now you are not uniformed. Now you know that a word can cause pain. I ask you, the next time you utter the word retarded picture this face:
And ask, would you say that word in front of her? In front of me? In front of her family? If the answer is no, then you have your answer to the question is the word retard is just a word.
When I first put this picture in this post I had the word RETARD stamped over her face. But the image made me gag. I cannot imagine my daughter as a retard (stupid, obtuse, ineffective). I hope the thought of RETARD over her face makes you shudder as well. I took the pledge, will you?
Last week there was an article in our local paper titled, “Special Education costs blamed for (school) layoffs“. Lucky for Boo this is not her school we are talking about. However it struck a chord. Why must we pit one against another?
Our town is small. We do not have many businesses therefore the tax burden rests on the property owners. Frequently we see battles pitting the school department against the municipal side of the budget. This is the first time, to my recollection that we are putting students (and their needs) against one another.
I am extraordinarily grateful that this article was not about our town. Yet I live with a fear that it will be soon and we should explore ways to avoid it at all costs.
Probably because this is the first time I have had a child in the “special education” cohort of the school system.
Which is not quite true. My older daughter goes three mornings a week for extra help in math. She has gone to summer school for math assistance. This is the only subject she struggles in and the school (and tax payers) have supported her needs. I am sure it is for the care they show all students and also to increase the MCAS standing of the school. A quid pro quo, if you will.
Boo on the other hand is a different situation. Boo brings tremendous value to her classroom. Her classmates will grow to be more empathetic, understanding of another’s needs and more accepting of their peers. Inclusion means that while Boo is exposed to peers for advancement while she advances their sense of community.
But she is a drain on the school system. Boo receives physical, occupational and speech therapy from the school system (which in my opinion should be the responsibility of our insurance company to pay). She has a dedicated 1:1 therapist that is with her during the school day. This is for Boo’s safety (she wanders) and to make sure she can participate in class activities. That is, after all, the purpose of inclusion: to have Boo participate. Without the aide she simply cannot.
Due to the layoffs, that other school system has modified some 1:1 care. Now a therapist will have 2 (or more) children under their responsibility. Let me explain why that is an impossible task to give that staff member. Logistically it is difficult. If you take your two children to the playground you know they will not leave. If a therapist takes Boo and her other charge, she cannot have Boo on the slide and the other child on the swing. How can she make sure both are safe? What if one has to use the bathroom?
Education-wise it is still ill-advised. The therapist sits at a table with Boo and reviews counting. If she has another charge, how can the children and the therapist concentrate and make sure the program is run correctly and with consistency? Just as a teacher with 30 students in a class cannot make sure every child understands the Vietnam War, a special needs therapist cannot split their attention equally with more than one child and be confident they are getting the most out of the child. Having another child is a distraction for all.
But who should pay? That is really the question and you are probably not going to like my answer.
I believe the parent should pay for some of the care and education. It is our child and our responsibility. However we cannot. We simply do not have the money to pay. Just as the town budget is stretched a parent of a special needs child is under a financial burden unlike no other. Our medical bills are higher, we pay out of pocket for supplemental insurance and at age 5 we are still purchasing diapers, wipes and pull-ups. Due to the amount of physician and therapy appointments we also cannot work 40 hour work-weeks. A family with a special needs child budgets in ways you never imagined. It is constricting and inventive.
Here is where I will again anger many. I also think that the tax payers should not have to pay for music, sports, clubs or electives. English, foreign language, history, math, science? Yes. That is education. But electives, including music and art, should be the responsibility of the parent to pay. Those electives are also a drain on the school system. There are pensions, salaries and healthcare costs associated with those staff members just as the special education staff.
There are a lot more students taking electives than using the special education department.
I am not sure of the answer. I do believe that we should pay a portion of Boo’s care. I firmly believe that our insurance company should have to pay for her therapies that happen in school, including her ABA therapies. I think some sliding scale should be in place to take some portion of the expense off the community.
However, if I am going to pay privately for Boo’s public education than I believe I should also have to pay for my older daughter’s music instruction.
How to survive life as a parent with special needs. Okay that is a lofty goal! It is hard enough navigating parenting with a child who is typical. Add in a few diagnoses and life can get overwhelming. But here is my go-to list for surviving the life I never expected.
1. Keep your sense of humor. If you have lost your sense of humor because it was drowned by vomit, poop, tantrums or tears Google comedian Steven Wright. How can you not chuckle at thinking: “Is it weird in here or is it just me?” (Steven Wright)
2. Make a daily goal. For me it used to be brushing my teeth at least once a day. Now it is making sure I get to work without evidence of Boo’s breakfast on my shoulder.
3. If you feel all alone in this life as a parent with special needs, you probably are. But it is your job to find support. To scream at the top of your lungs I NEED HELP. If no one hears you, let me know and I will add my voice to yours.
4. Make your child’s teacher/therapist/doctor your friend. Find out about their lives. Interact with those who your child spends most of their time. It will enrich your life in ways you cannot imagine and make issue #3 far less likely to happen.
5. Have a glass of wine. Not the bottle a glass.
6. Allow yourself to cry, laugh, grieve and rejoice all in the same minute. It doesn’t mean you’ve lost your mind but that you may have found it.
7. Find “ME” time. I know, I hardly ever do. But when I can run for just 30 minutes I come back a much nicer wife, mother and person. It doesn’t have to be every day (oh how I wish I could find me time every day) but make time for you.
8. You hopefully have a partner. The child’s mother or father. Guess what, they are your partner in this and they too are parents with special needs. So lean on them. Consult them. Do not do this all on your own and remember that partner is there. Make them take your child to therapy, a doctor’s appointment or do drop-off at school. For too long of a time I tried to be super mom, handling everything for Boo. Once I let David in our lives were much easier. If you don’t have a partner look at rule #3.
9. It’s okay to wear your sweat pants with a hole in the crotch for a few days in a row. Just try to remember to wear underwear so you are not arrested for pulling a Miley Cyrus at school drop-off.
10. Mix-up your friends. Try to anyway. Keep a healthy mix of parents with special needs and those with that normal kid who just talked back to them. It will make you appreciate your own little wonder. It will also help to make sure you feel alone.
11. It’s okay to get pissed off. Seriously pissy at this life you didn’t expect or prepare. And once you think you’ve got it handled someone will take the rug out from under you. Consider yourself warned. It is okay to question yourself, your God and your child’s doctor. It is not okay for any freaking one to tell you that you are not allowed to feel anger, grief or whatever emotion you may be going through.
12. Your house doesn’t have to be Martha Stewart Spotless. I will say the state of our life is directly reflected in the mess state of the kitchen. But I have stopped saying to people, sorry for the mess. Instead I say, This is how it always looks and today is actually better.
13. Remember you are more than a parent. You are more than a parent of a child with special needs. You are you and may I say you are doing a fine job of navigating this life the best you can.
Lastly, and this is important: Five years into this life as a parent with special needs I will say this is our life. What we make of it. A glass of wine helps. But what really makes me survive?
The friends who have stood by to hold, comfort and more importantly laugh with me. So find some of those and keep them close. They will help you keep your sense of humor and your sense of self.
A funny thing happened on the way to becoming Boo’s mom. I knew Boo was not going to be the same from Abby right from the start. In a way that does not diminish my love and adoration for her sister, but in a way that makes me a better mom to both. However her being Boo turned me into mom that celebrates moments that shouldn’t happen.
Those who know this story are probably bored by now, but with Boo I am reminded every moment is precious. Even when she shits down my leg I can think “EW” and “wow she said poop” at the exact same moment. The thought that follows close after is thank the Good Lord and all that is Holy I had pants on.
There have been times when I have been in shorts.
When Boo runs to her sister to get her off the bus I think this is the child who Early Intervention told me might never walk. I rejoice because I can think of not one other person who gets to see their children race towards one another every afternoon at 4pm. Trust me on this, I never raced to get my brother off the bus.
When Boo says “mum” over and over again I never get tired of hearing her voice. I may wish for an indoor voice at 6am but I never shut the monitor off. I lay in bed and think wow she is up to her 20th word in a row. This is the child I worried would never speak and had her entire family learning sign language to help her communicate.
When I walk into the kitchen and find that Boo has relocated the furniture, managed to climb up the chair and is laughing like a loon I think to myself this is the girl they say has poor motor planning skills.
A funny thing happened on the way to becoming a mom…I became a mom of a child with special needs. Not only special but unique. One who five years later science still does not have a true diagnosis, other than unknown genetic syndrome. With a lot of other issues.
A funny thing happened on the way to becoming a mom with a child who has special needs I discovered what really matters in life.
(Un)Diagnosed and still okay 