Archives for the month of: July, 2012

Should a special needs parent have more children?

 Over the past two years that I have been publicly blogging, I have been asked the above question on more than a few occasions and in various different ways. I’m personally, always taken aback when someone approaches me with this question. On the surface it seems like an ignorant comment, from someone who just doesn’t know what not to say to someone else. While that may be true of some, there are times that people ask the question because they actually want to know.

I thought I would explore this question a little bit and present it to all of you for your thoughts and opinions.

Please keep this tactful and be sensitive to everyone’s feelings. While I don’t personally think anyone has the right to question someones family for this reason alone, or any reason at all, we are all entitled to our own opinions.

So, should a special needs parent have more children?

Isn’t it selfish to have more kids?

I had a recent reader post a comment asking this very question. This person was a special needs parent themselves and asked this in a tactful and seemingly nonjudgmental way. Basically, this person wanted to know why parents with one special needs child already would have more kids? The question was asked in this manor, “ I honestly would like to know why you chose to continue having children if you knew the odds were that you would have another child with disabilities? It seems selfish to risk having more children with serious health issues, and having a healthy child seemed that it would take away time from my disabled child.”  

To be completely honest with you, I initially took offence to this and was quite upset. However, this person was at least somewhat tactful and after thinking about it for awhile, I realized that this is actually a reasonable question.  It’s shines the light on a decision process with very real if potential consequences, for lack of a better word. Consequences is probably the wrong word to use here but I can’t think of a better word choice. I mean no disrespect to anyone by using the word consequence. :-)

I have decided to embrace this question and get the collective opinions of my fellow special needs parents.

Let’s look at the question itself

 

When someone asks me if I feel selfish for having more children after my first one was born with special needs, it’s kinda off putting. While they worded it nicely or nicer, it feels like they are questioning whether or not my children should be here.

My instinctive reaction is one of anger and disgust. However, getting angry or insulted doesn’t do any good. The best thing to do is probably just walk away. I mean, there are just some things you don’t say to a special needs parent. Am I right?

However, if you re-word that very same question to something with a less hostile tone, it’s actually a very good question. Personally, I would word it something like this: were you ever worried about having more kids, knowing that your first child has special needs?

To me, that is a fair and realistic question, not to mention something that may have weighed heavy on many when planning to continue building their precious family.

The Lost and Tired family ended up having 3 children, all with Autism and various other health/mental health issues. Do I feel selfish for having more kids after Gavin? The simple answer is no, and the logic behind that answer is just as simple. Gavin is not my biological child, so there was no reason to think that there was a greater risk to Lizze and I having children together. Also, Elliott, when compared to Gavin, seemed very typical. We didn’t know he had Aspergers until well after Emmett was born. In fact, Elliott wasn’t actually officially diagnosed until after Emmett was diagnosed.

It wasn’t like we knew that this was going to happen but even if we did, I would never change a thing. I can’t imagine life without any of my babies. Do we struggle? Of course we do, and there are a few reasons for that. Do we get some public assistance? Yes we do and for that, we are very grateful. For the record, I work very hard to be as self-sufficient as possible, it’s just there’s only so much I can do. However, our challenges can’t all be blamed on having three special needs kids.

For starters, I never needed any help until I got injured on the job. I was a fire/medic and destroyed my back, saving someone’s life. Even after that, I worked for years as a paramedic, until the pain was to great and my wife’s health began to fail. At the same time, my kids needed so much more than just one of us could provide alone. Everything sorta went down hill from there.

Let me make this very clear, I don’t feel I need to justify the existence of any of my children, to anyone, ever.

Having said that, I want people to understand that there is aways more to the story than meets the eye. While it’s true that the demands and challenges of raising three special needs boys impacts literally, every aspect of my life, they are not and will not ever be considered a burden. If I was given the chance to undo choices my wife and I have made in regards to having our two youngest, I would politely say no thank you. I mean, I might change how I personally handled something, but I have never regretted having any of my children and never will.

As far as I’m concerned, no one should ever feel 

the need to justify their family, to anyone, anywhere and for any reason.

Thoughts or opinion So now that you have heard my thoughts and opinions on this topic, I would love to hear yours. Please feel free to discuss this below in the comments. I really would like to know what you think about this and if anyone has ever asked you the same or similar question. Please be respectful to each as we are all entitled to our own personal opinions.

This was posted via WordPress for Android, courtesy of Samsung’s Galaxy S III. Please forgive any typos. I do know how to spell but auto-correct is working against me. 
-Lost and Tired 

Please join our Autism Help Forum 
Look for “Autism Help” app at the Google Play Store 

Read more: http://lostandtired.com/2012/03/12/if-youre-a-special-needs-parent-is-it-selfish-to-have-more-kids/#ixzz221wghRuJ 
Follow us: @Lost_and_Tired on Twitter

Read more: http://lostandtired.com/2012/03/12/if-youre-a-special-needs-parent-is-it-selfish-to-have-more-kids/#ixzz221wWfTeK 
Follow us: @Lost_and_Tired on Twitter

 

Advertisements

 

What is a SAFE SPACE?  Is this a new age term?  Do you have specific spaces you consider safe?  Is this a physical place or is it space between people or within oneself?  Creating a safe space is new agey,  but now that I am aware of  what this FEELS like.  It’s a new description but an age old idea. Safe space can be:

  • a physical place
  • a relationship (parent & child, spouses, friends, boss & employee etc)
  • used during problem solving (or a disagreement)
  • time used before making a decision
  •  given verbally
  • used in a conversation
  • a mindset

When I grew up the word “safe” meant free from  physically getting hurt. Now a safe space means something different to me.  Its a place where I can be free, completely free to express myself in any way I can imagine.  A space with no judgment and no criticism.  I am lucky to know how I am able to actually create this space anywhere.

This year I was faced with a recurring issue with the children. All the children presented anger issues during our sessions. Just a coincidence?  I think not.   This year, due to my acting class, I am more aware than ever before of my feelings and trust myself to show them. It’s a whole new rainbow of feelings!  What  I brought to my little clients this year, was a safe space to feel.  I allowed them to be as big and mad as they felt.    Maybe it created disagreements, but I was truthful and genuine from me. 

I see many parents dancing around the truth, using fear, or thinking they are helping their child by giving in to what they meltdown about. This message couldn’t be a worse lesson to learn.  By “sticking to your guns” as a parent, it shows strength and creates limits and boundaries. Children who are acting out, are acting out for a reason. They may not be happy with an answer they get, or they may be physically uncomfortable. If they are coaxed into being happy, or moving on from tears, they are not feeling or learning conflict resolution.

After there were no more tears, and there was no attention from me, other than occasionally asking “do you need me for anything?” They  came to me, joined me in what I was doing asked me if I wanted to play.  This respectful bond made our connection even deeper. In all four scenarios, after we resolved the problem, our sessions became something more special.

In one case, a little girl brought me to her room (which we hadn’t been to in the year I was working with her, in another case a little boy began greeting me and inviting me to play (which hadn’t happened in 6 months.)  Another child came to me with a boo-boo, in the past she would only go screaming to her Mother.

If we do not provide children a safe space to completely feel, they will never learn how to express themselves.  Caregivers may feel the need to do something, doing something may look like doing nothing. We now can know that giving them space –  may look like doing nothing, but it is something, and it is powerful.

Tantrums are thought of as “nightmares” or “something terrible.”  I see them as children not knowing the correct way to express themselves.  I’ve had and have tantrums.  In that moment, I am so passionate about something I am unable to express myself using any of my tools.  I understand tantrums, I am compassionate towards children I work with who express themselves this way, as well as random children on the street who have them.  I am also compassionate towards parents and caregivers who only think stopping a tantrum is the way to handle it.

How can you “teach” your child to feel?

  • Allowing yourself to feel in front of them
  • naturally demonstrating your frustration
  • showing conflict resolution
  • validating their feelings, without judgement (I understand it’s not fair, I would be upset, frustrated, angry too)

If we give people and ourselves all the space we really need, life becomes easier and more effortless…

This has become a great lesson for me, a naturally born pushy gal!

Namaste and thank you for reading

Building a Reliable Support Staff

I realize the day will come when my husband and I can no longer be in Robin’s life. We’re definitely replaceable; however, my biggest concern is the learning curve of her new providers. This close and personal interaction with an inappropriate person could easily encourage her autism behaviors to reappear.

Trying to meet this need, a friend suggested I purchase the book, All Cats Have Asperger Syndrome, by Kathy Hoopman (Jessica Kingsley Publishers, 2006). This book gave me the vision to write one just for Robin, Ode to My Staff. Each page has a picture of Robin, emphasizing a particular uniqueness or concern she has. Sample pages include:

Ode to My Staff

  • Respect me. Don’t talk about me, talk to me. Remember—nothing about me without me.
  • I expect you be totally honest with me—at all times.
  • Please make sure I’m eating a gluten-free casein-free diet, sleeping well, and taking my vitamins properly.
  • Do not enable me. I can do it myself, but I may not realize I need your support to make that happen.
  • Have patience with me, and give me time to complete a task. In other words, don’t rush me.
  • I do need change in my life. Push me to try new things even though I say no. I can get my priorities mixed up sometimes and I think my routine is more important than trying something new.
  • Don’t allow me to get stuck by my autism force.
  • Sometimes I get frustrated, but it’s not because of things you think I’m frustrated about. My brain gets overloaded and all mixed up sometimes and I can’t clearly tell you why I’m anxious or upset.
    • Example: I appear angry when you call. Actually, I’m angry because you didn’t call me last night, as you said you would, and I don’t want to talk to you right now.
  • I don’t see obvious things other people see, yet these things are important to me. Someone needs to keep me on track.
    • Example: I need you to help me review my closet and remind me when to purchase new clothes.
  • I need you to remind me of health and safety issues because I forget the importance of safety rules and recognizing danger.
    • Example: Sometimes I come home after dark, and I forget to check my surroundings when getting out of my car. Also, I forget and carry too many bags into the house when I can get them in the morning, when it’s light outside.
  • Remember, I need love and encouragement, an occasional bit of advice, and a hug once in a while.

For additional information, read Asking Ann About Autism .

Ann is my guest for the show on July 15th on Your Beautiful Child Radio on July 15th 11am EST

Here is a young 6 year old boy who has Autism and I say, he is a gifted young boy as well…

Did you ever wonder if your child is gifted?  What if they have been diagnosed with a special need?  I have met so many children who have been diagnosed on the autism spectrum who indeed have amazing special talents.  Their talents have been in numbers, the arts, memorization, building, understanding maps and more.

Here is a reason children with autism (and any special need) are AWESOME.  They are highly motivated in doing what they are good at.  Who else gets the chance to shine like this?

Suzanne Martin and I discuss gifted children with special needs on Your Beautiful Child Radio, July 8th at 11am ESt

Below is Ethan and his parents donation page on Autism Speaks

http://www.walknowforautismspeaks.org/faf/donorReg/donorPledge.asp?ievent=995573&lis=1&kntae995573=E5340495B49849ECB586F4936E4D5488&supId=292825196

%d bloggers like this: