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Fears and Raising Children with Special Needs

October 26, 2011 in Featured, From Julia by Julia Roberts

When we are sharing here on Support for Special Needs about the unique challenges of raising kids that have differences there’s always someone to offer a different perspective. In doing so they make you think about how grateful you are there is someone who truly understands.

We all have different perspectives (obviously) on what to focus on, what motivates us to keep going each day (when the day kicks us in the teeth) and in what way we present our stories (public or private, positive or negative). We all have fears. Some of us share our fears; some have them but are afraid to share them.

During my son’s battle with kidney failure, a botched surgery, kidney transplant, and subsequent frightening depression I had many fears for his safety, for his general well-being, for his life. I didn’t voice my fears about him dying very often and I tried to shut them away during the period of time he was suffering but it was an underlying tone for me. My husband wasn’t able to voice it, think about it, or hear me talk about it either. It was a hard time to have those fears.

Some fears that I and other community members have…

  • -          Financial security, for us now and our children in the future. Keeping insurance, hitting maximums before our kids are 5 or 10 and the many out-of-pocket costs of taking care of kids with special needs. Many of us are  discussing  special needs trusts before our kids are five.
    -          Independence into adulthood. We want our kids to have as much independence as they are able to gain. We worry for their safety and happiness.
    -          Bullying. We worry our kids that their developmental, physical or mental challenges will be the target of bullies. For me, this started at kindergarten and continues…
    -          Change. For some of our kids change can be extremely difficult to navigate. Early on we learn that they don’t like natural transitions in the world and we grow to fear it because adjustments are difficult. For parents, sometimes change means a progression in a disease symptom, medication, treatment, or arrangement. Sometimes we fear it. Greatly.
    -          Acceptance. Tied to bullying of course, but acceptance is huge worry for many of us. We want our kids to grow up being able to experience typical things everyone wants to enjoy…friendships, inclusion in social events, feeling welcome in new  groups of people, sleepovers. Acceptance.
    -          Education. We want what is our child’s right. Reasonable access to education. We want a compassionate education team, we want services that will help them, appropriate classroom settings and people to treat us parents/caregivers as part of the team. We want everyone to help our kids reach their potential. Period.
    -          Abandonment. Sadly, the acceptance item on this list extends even to people who love us. Our kids aren’t “perfect” and some come with a lot of management; behavior issues and plans, problems with eating, dressing, toileting and speaking. We want the people who love us to try to understand that we’re doing our best and we don’t want you to abandon us because it gets rough. It gets rough a lot.
    -          Relationships. Fearing change in relationships because of the relentless needs. Along with that I fear losing myself. Period.

Community member, Michelle Howard said, “I hate the word fear. It has too much power over people.” While fear can permeate my subconscious it doesn’t rule my life. For me and most of the parents of special needs kids I have contact with letting fear rule us would mean that we have to pull energy from the job of managing the special needs our kids have and our time is too precious.

I’ve learned to live with fear. It’s something the forces me to grasp my reality and it’s sometimes what propels me to seek out and appreciate the joys.

Originally published in January 2011

My Great Story Campaign for Mother’s Day

May 8, 2011 in Featured, Featured Group, From Julia by Julia Roberts

A Forum to Share Her Story

NDSS & The My Great Story Campaign join together to raise awareness for Down syndrome in celebration of Mother’s Day.

Today, Mother’s Day 2011, the National Down Syndrome Society (NDSS) will celebrate the accomplishments and achievements being made by people with Down syndrome by honoring their mothers. The My Great Story (MGS) public awareness campaign seeks to ignite a new way of thinking about people with Down syndrome by collecting inspirational stories told by people with Down syndrome and their family members, friends, colleagues, and many others. NDSS has added a new section in honor of Mother’s Day. Participants share a story about their mothers, grandmothers, sisters, aunts, cousins or friends who have a son or daughter with Down syndrome. Anyone can comment or vote on the stories already in the collection. NDSS invites you to cover the MGS campaign, post, tweet and blog about it, and promote reposting, retweeting and more sharing amongst your audience.

NDSS also invites you to watch the two MGS Celebrity PSAsthat star TV Hosts Meredith Vieira and Nancy O’Dell and post them to your media outlet’s website. Vieira’s dedication to the MGS campaign stems from her relationship with her son, who has worked as a camp counselor for people with Down syndrome, and O’Dell was drawn to campaign through her fond memories of her mother’s sister, who had Down syndrome. Both Vieira and O’Dell have also submitted stories to the campaign that speak to their experiences.

Down syndrome is the most commonly occurring genetic condition, in which the individual has a third copy of the twenty-first chromosome. One in every 691live births is a baby born with Down syndrome, and it is the most commonly occurring chromosomal condition. People with Down syndrome attend school, work, participate in decisions that affect them, and contribute to society in many wonderful ways.

People with Down syndrome are living longer than ever before. The life expectancy of individuals with Down syndrome has increased dramatically in recent decades – from 25 in 1983 to 60 today. Children with Down syndrome are often fully included in social and educational settings and increasingly go on to graduate high school and attend postsecondary education programs. While placement in the workforce remains a struggle, the situation has improved and adults with Down syndrome have attained a variety of positions, bringing enthusiasm, reliability and dedication to their jobs.

We encourage you to get involved and help NDSS and mothers of people with Down syndrome everywhere to raise awareness for people with Down syndrome.

About My Great Story

MGS was created pro-bono by NY based Ad Agency, Pedone. After 14 months of market analysis the Pedone team developed a campaign in an effort to shape the future for all people with Down syndrome. The online story book was developed by CT based Interactive Agency York and Chapel, who spent over 12 months developing the user friendly technology, sophisticated design and esthetics, and incorporation of the spectacular print ads shot by Zachary Scott. To date, over $5 million has been donated in national and regional ad space and services. The campaign has been seen by over 175 million people across the country and featured in media outlets such as Allure, Fortune, Golf Digest, The New Yorker, Newsweek, Time, Vogue and Wired, among other noteworthy outlets. To learn more, visit www.ndss.org/stories

About NDSS

The National Down Syndrome Society is a nonprofit organization representing the more than 400,000 Americans with Down syndrome. The mission of NDSS is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome. The National Down Syndrome Society envisions a world in which all people with Down syndrome have the opportunity enhance their quality of life, realize their life aspirations, and become valued members of welcoming community. NDSS has over 350 affiliates nationwide. To learn more, visit www.ndss.org.

We Were In Real Life

March 9, 2011 in Featured, From Julia by Julia Roberts

Rody, Our Mascot!

One of the important things about this site is the connection. Connecting with others who can relate is by far one of the best things about coming here and sharing. Here, you can support and be supported. We love to see people talk in the groups and help each other.

One of our 2011 initiatives was to bring that connection to life by hosting small events. Atlanta seemed like the logical choice and so we set out to plan. We knew we wanted it to be educational. Casual. Affordable. We didn’t want it to start to early or end to late. We talked about future childcare options. Large locations, central to Atlanta. Again, affordability. We ended up settling on a 3 speaker format and the theme of Relationships. Personal, medical and educational relationships and navigating them better in a special needs world.

I’m proud and happy to say our inaugural IRL event in Atlanta was a huge success! Thank you to our sponsors that made it affordable for attendees ($15) and muffins and lunch were deliciously provided by Babette’s Cafe.

Presenting sponsor: Celebrate Calm

Additional sponsors: Hewlett-Packard, and Spin Master

How do we define success?

  • Everyone moved in from seats around to gather for lunch to talk.
  • Everyone loved the format of speakers then lunch then speaker then an hour before we left for the day.
  • Everyone asked when the next one was going to be held.
  • Everyone asked to be put on our mailing list.
  • Many people hugged when they left.

We hope to bring this type of event and others to other cities where we have members. If you think you’d like to have one in your city, let us know! With Dawn in Ohio and several community members there as well, it’s the next logical location…and of course, BlogHer! But that’s another type of event altogether.

Thanks for letting us create a different kind of community. One where we can grow and learn from each other and one where we can figure out what kind of community we want! Thanks Atlanta!

 

Why IRL, Why Now?

February 4, 2011 in Featured, From Julia by Julia Roberts

When Dawn and I had this grand plan of Support for Special Needs.com we talked about what we liked about communities online. We talked about how we loved to make connections, share information and resources and how we like to expand our friendship base.

We are certainly making that happen here. We’ve both been able to get to know people here, build friendships and give and get support and we hope that everyone here that is engaged feels the same! Our little Support for Special Needs is growing up. Way back when (a year ago) when we were brainstorming what we wanted to do to make the site unique we talked about turning what is happening online to offline. That was the day we dreamt up some kind of official function we could replicate in cities offline. At the time we didn’t really know what they would look like but we did know that we wanted people to meet, to learn, to connect. We wanted people to enjoy what we’ve enjoyed with people we’ve met online – to connect in real life.

The timing is right and we’re set.

The IRL Connect events were official. We had a logo, a timeline and we had a date! We’re thrilled to announce (again) that our very first IRL Connect event is March 5th in Atlanta. It’s focus is Navigating Relationships in the special needs world relating to personal, healthcare and educational needs. It’s a casual setting with lunch, time for connecting. Here’s specific information on the Atlanta, March 5 event. We welcome our Presenting Sponsor of the event and site contributor, Kirk Martin with Celebrate Calm.

We’re also in the throes of planning an IRL Connect event pre-BlogHer (for August 3) for the Comma Bloggers (my term because I introduce myself as a “Blogger, Special Needs.”). We hope that if you are going to BlogHer you will sign up on our list to make it easier to identify each other (we’ll provide a list electronically before BlogHer). We’re working on a couple of topics for that event with speakers just for us and we’ll let you know when we iron everything out.

I just wanted to thank all of you community members. Thank you for sharing here, for helping each other (and me) and for allowing us to serve the special needs community in a different way through our IRL Connect events.

The New Year

January 5, 2011 in From Julia by Julia Roberts

I am not a fan of making New Year’s Resolutions. I think they put a lot pressure on us to achieve more, get more and do better.

I am a fan of those things but I really strive for that in my everyday life. I strive to be the best parent I can be to my kids who, frankly, need two kinds of parenting. I strive to be a better advocate for the kids and I am slowly trying to teach them to be their own in the world. I strive to be the partner I want my kids to have one day in their long-term relationships and I try to set a good example of a good friend.

If I’m honest, I also don’t want my kids to see me fail and be upset because I didn’t achieve a goal. I don’t mind them seeing me try and not reach a goal, but I don’t want to set it up so that every bit of my confidence hangs in the balance of achieving the ONE BIG GOAL. And that’s what I think can happen with New Year’s Resolutions; for me anyway. I think it’s the pressure that gets to me.

When I go to bed at night I think about what I want to do the next day and it always involves something to…

  • -          Help my kids reach their potential,
  • -          Teach my kids about advocacy and activism,
  • -          Be nice
  • -          And to make sure the people I love know it.

I don’t proclaim to know how every parent of special needs kids feel about resolutions. But I guess that some feel like they resolve to do things everyday like I do. So even though the New Year allows us to think about it as a fresh start, to me it really is just another day, another resolution.

How do you approach New Years? Official New Year’s resolutions or not?

Happy New Year! My wish is that 2011 is kind to all of us and if it’s not, my wish is that we will find the strength, perseverance and resolve to make it another day.

How do I deal with meltdowns in public?

October 1, 2010 in He Said/He Said by Celebrate Calm

Question: How do I deal with meltdowns in public? How do I deal with strangers making comments or judging me?

Calm Dad Says: Remember that as a parent, your primary responsibility is not how your child behaves, but how YOU behave. The truth is that no matter how great a parent you are, you cannot always control your child’s (or spouse’s!) behavior. But you can always control your emotions. The quickest way to change your child’s behavior is to first control your own.

If you react emotionally out of embarrassment or guilt, your tension will escalate the situation. How many times have we yelled, “I don’t have time for your tantrum right now!” as if our kids are going to glance at their watch and say, “Oh, do you want to reschedule, Mom?” Put out the emotional fire and be the calm, immovable rock they can count on.

If you allow another person’s comment or opinion to cause you to snap at your kids, you are giving some stranger power over your emotions and relationships. Do not give anyone that power. You don’t owe anyone an answer. In the end, the relationship with your child is most important. And when your child sees that you can remain calm and emotionally available to them, even when others are giving dismissive glances, they will feel safe and secure.

Calm Kid Says: When I’m upset and freaking out, it’s usually because I’m feeling out of control of the situation. I don’t need my parents freaking out. That just makes me more upset because now no one is in control of themselves, and it’s just a big scream-fest or threat-fest. When they are yelling or just glaring down at me, it’s not safe to even apologize. What I really need when I’m upset is for my parents to model calm and lead me into a calmer place.

I remember when I was little and I’d throw a tantrum at the playground in front of all the other kids and parents. My Dad would sit down, cross his legs and just say, “You can throw a tantrum if you want. If you do, do it with excellence. But if you want to figure out a better way to deal with feeling disappointed, I’ll go swing with you and we can talk about it.” That helped me to know there was a different way and he wasn’t going to go ballistic on me. And that’s why I trust him when I have teenage issues.

Celebrate Calm Founder Kirk Martin and his son, Casey (17), have trained over 100,000 parents, teachers and kids how to control their emotions through their newsletter, radio show and workshops. Sign up for their newsletter, say hi and learn more about their family-friendly programs at www.CelebrateCalm.com.

To Sign the IEP or Not to Sign — this is the question!

August 20, 2010 in Ask the Special Ed Lawyer, Insider Insight by dianaglick

Whew! You made it through the IEP meeting and are still standing. Now that the meeting is over, you are being asked to sign the IEP so the District may implement the proposed services, accommodations and goals. Should you sign or not? And, why does it matter?

Your Rights

The District must obtain your consent before providing the services indicated in the IEP. However, parents are under no obligation to sign the IEP, particularly if they disagree with its terms. Parents may sign, refuse to sign or authorize certain services without agreeing that the IEP provides your child a free appropriate public education.

The Ideal Scenario

Student raising her handIn the ideal IEP meeting, each of the following occurs:

* The designation makes sense and is back up by appropriate assessments
* Each of the professionals has given a report and there are offers of services that address all of your child’s areas of need
* There are measurable, understandable goals for each of your child’s areas of need
* If necessary, there are modifications and accommodations to the curriculum (homework, class work, testing) that will allow your child access
* The District has presented you with a written document reflecting all of these items, plus a narrative that contains the main points of discussion during the meeting.

When this kind of a meeting has occurred and you feel good about the outcome, by all means, give your consent. It is when one or more of these items is missing or has gone awry that you should consider not signing and instead developing a strategy to address the unresolved issues with the IEP team.

Your Options

Option 1: Sign the IEP. See you next year for the annual review!

Option 2: Authorize the implementation of goals and services, but do not agree that the IEP provides a free appropriate public education.

This is a very helpful middle option that can serve to move the process forward and extend protections to parents and student without compromising any potential legal claims in the future. It also serves to keep the conversation alive if there are items pending resolution. This response can be made with a simple sentence written on the signature page, or can be written up in a “Parents’ Addendum to the IEP,” which lays out your concerns in greater detail while still providing authorization to implement what the District has proposed.

Option 3: Do not sign at all.

Some parents opt to take the IEP home and review it carefully before signing it. This is a great idea if you would like some time to digest the information presented at the meeting and make sure you understand everything before signing. If you are satisfied with the document, make sure to sign and get it back to the District as soon as possible.

In other situations, parents fully disagree with some aspect of the IEP and do not want to provide their consent or authorization. If you find yourself in this situation, you will want to consider your next steps. Would you like to have another meeting to discuss specific aspects of your child’s program? Would you like to see revisions to the goals, more goals or perhaps fewer goals? Are there assessments necessary to determine what your child needs? Let the District know, preferably in writing, what you would like to see happen next and emphasize the importance of collaboration in getting an appropriate document with a plan to address your child’s needs.

Some Pitfalls of Not Signing

While not signing your child’s IEP is a right you have and one that can be exercised in the face of an inappropriate plan, there are some potential pitfalls you’ll want to be aware of as you are making your decision.

First, if this is an initial IEP finding your child eligible for special education, refusing to sign or authorize implementation means that your child is not yet considered eligible for special education. This may be important if your child is experiencing significant behavioral difficulties. As I will describe in greater detail when we talk about discipline, the IDEA provides special protections for children with IEPs when they have committed disciplinary infractions. If your child is racking up multiple suspensions, the safest course of action is to authorize the implementation of the IEP and agree in writing that your child is eligible while you continue to hammer out the details of the plan.

Second, if you decline to provide consent or authorization (no signature at all), the District is not legally able or required to implement the services offered in the IEP. For example, if the District is offering speech therapy for 30 minutes per week and you believe your child should get 60 minutes per week, it might be better to authorize the District’s offer of service while you continue to negotiate, instead of rejecting all services by not signing. If you refuse to agree to your child’s annual IEP, the District is required to provide the placement and services offered in the last IEP that you signed and that was implemented. If this is an initial IEP, there is fallback IEP to implement.

Finally, refusing to sign an IEP can create an atmosphere of tension among the members of the IEP team. The District wants and needs your signature in order to move forward and some of the team members may feel insulted or offended that you have refused to sign. This should not deter you from advocating for your child, but it’s good to understand how your actions could be perceived by the District. The most important thing you can do once you decide not to sign your child’s IEP is to keep the lines of communication open with the District and indicate clearly what you would like to see happen to resolve the conflict.

Disclaimer:

This column reflects the views of Diana B. Glick in her individual capacity. It does not necessarily represent the views of her law firm or her clients, and is not sponsored or endorsed by them. The purpose of this column is to assist in dissemination of information about federal special education law, but no representation is made about the accuracy of the information. The information contained in this column is provided only as general information for education purposes, and topics may or may not be updated subsequent to their initial posting.

By using this column you understand that this information is not provided in the course of an attorney-client relationship and is not intended to constitute legal advice. This blog site should not be used as a substitute for competent legal advice from a licensed attorney in your state. This column is not intended to be advertising and Diana B. Glick does not seek to represent anyone desiring representation based upon viewing this blog site in a state where this blog site fails to comply with all laws and ethical rules of that state.

Now Peace, I Can Use Giveaway

August 2, 2010 in Faith, Giveaways by Julia Roberts

Since I have been a parent to a child with special needs people have told me that I was hand-picked. I was “chosen” by God to parent because I am strong, because I am able to handle all that my kids need and somehow implying that they’d be unable to do it because I’m the only person that could do it this well.

When one friend said this to me, I barked back, “Wait! You could do this, you are one of the most organized and strongest people I know!” She told me that I was right, that she had all the skills to do it, but she said she couldn’t do it with as much grace.

When I’m feeling impatient with my son for his behaviors, or my daughter for her (validated) fears I don’t feel I have much grace. But other days I rely on my relationship with God to get me through with grace. I have a great deal of faith that has seen me through some pretty dark times. From times that included seeing my kids through some health scares as well as a recent bout of mental illness with one, to relying on faith to know that my marriage would be there on the other side after the chips fall.

For me, I’ve not had faith without work. My faith hasn’t always been strong and it’s during those times that I rely on my friends to have enough faith for me and so that is how I maintain my connection to God when I am working out my God relationship problems out. Because that is there too.

I’m open enough to know that there are many ways people make their way with their faith and so the theme for the week, which we’ve been calling God Week, was born. That isn’t to say that God is the only path to faith, either. It was born out of the interest of how other faiths see God and disabilities. Of how different faiths and theology explain the “God wouldn’t give you more than you can handle” belief that caregivers in the special needs arena so often hear.

Finding people who could provide essays from different faiths was harder than we expected but we think we have some unique experiences and beliefs to share. As we post essays this week, we’d love your input, so please comment here, or join in the discussions at our non-denominational group Faith & Disability or create a spirituality group focused on the religious path you are walking. It’s not as much about God Week as it is about Peace Week. Hoping that by bringing some other ideas to discussion means that we can all find our way to peace – whatever that means for us.

In honor of that, we’re giving away a little peace. Registered members can comment for a chance to win a little peace for themselves. Here’s a suncatcher for your corner of the world, a 4″ ice blue reminder of peace from Northern Sun.

Meet Ellen of Love That Max

July 23, 2010 in Around the Web by Julia Roberts

Max and his sister SabrinaIf you’ve been blogging or reading blogs for a couple of years and you surf blogs to find new ones you might identify with you’ve probably stumbled across Love That Max by Ellen Seidman. The focus of her blog, she says, is inspiration and irreverence for parents raising kids with special needs. She’s got a powerful voice in the special needs genre and we’re delighted to profile her today to round out our relationships week – focusing on their family dynamics and relationships.

Ellen is mom to Max, 7 and Sabrina, 5. She’s married to Dave (the most patient guy EVER invented, she says). She’s been blogging since October 2008 and was thinking about it a year before, saying “I excel at procrastination.” For her (paying, day) job she’s freelance magazine editor/writer, professional snacker.

Enjoy getting to know Ellen as much as I have…

One of the things I love about your blog is how you write about the good and bad, I’m especially impressed when you write about a (special needs) parenting realization (a particular recent one was the one about Max wearing bibs in public)…have you always been so open on your blog? Or did that candidness evolve?

When I started the blog, I decided I was going to air it all. I needed to get stuff off my chest, yes, but I also wanted other parents to know they are not alone…and that they shouldn’t ever be ashamed to feel the way they do.

One of our recent focuses was about fun. I’d love to hear about how your family might alter your vacations to accommodate Max…if you do alter them at all.

If we’re going to a place that has a day camp, I’ll call ahead and make sure they know about Max’s needs. Right now, though, our vacations are all about accommodating BOTH kids, and making sure they have a good time! I can’t wait till they’re older and we can take them to places that don’t involve cartoon characters and princesses.

Can you recap some of the wonderful things people did to make your recent vacation great and how people made Max feel special?

Mostly, people were just incredibly kind. If Max was on a ride and didn’t want to get off, the operator let him go around again…and again and again. s The woman at the miniature golf course let him do it free. And a guy at the place we were staying even handed him a slice of pizza out of the box. Max charms people! Maybe he’ll be a politician when he grows up.

Would you talk about inclusion for Max and what that means in his daily life?

Max attends a school for kids with special needs. In other aspects of his life, I do my best to include him in typical-kid activities, whether it’s assisting him at a playground or encouraging him to show another kid how the speech app on his new iPad works.

Any words of wisdom you’d like to share with parents with younger kids with special needs? Particularly if it involves how to stay focused on weaving fun into our everyday lives (especially when the days seem long and seem to be the same (hard) day over and over.

During the early years with Max, my life wasn’t nearly as much fun. Not just because he needed so much more care; I was always so worried about him. The worry consumed me. In retrospect, I wish I would have made more play dates, both with friends and with other moms of kids with special needs. Going to places wasn’t always so easy with Max, because he was sensitive to crowds and loud noises, but if your child doesn’t have issues like that, get out there! Find museum exhibits to go to, kid play spaces, whatever. It’s good for both of you. Oh, and don’t put so much pressure on yourself to keep doing therapeutic stuff with your kids. Don’t worry that playtime always has to be “therapy” time. Try to relax. Be silly. Make up nonsense songs. Put on a CD and dance around with your kid. It’s all good.

In what way did the dynamics change with extended family members because you had a child with special needs? What are the challenges and what were you pleasantly surprised about?

I have to say, after I had Max I got even closer with my sister. We have such different personalities that we were never best friends, but I can’t even begin to tell you how much she was there for me after Max was born. My mom (whose always been the most good-hearted person I know) and my sister would come visit on weekends and take care of Max, house stuff, you name it. They’d bring me little treats and presents. They’d tell me to leave the house and go take some time for myself. Oh, and they’d gush and gush about how cute Max was, which was incredibly uplifting during a very hard time in my life. I knew he was delicious, but I was so consumed with anxiety about his future that I’d forget to just enjoy my baby.

The hardest part was dealing with one relative who just didn’t GET what it meant to have a kid with special needs, and still doesn’t. This is the same relative who, mind you, said these awful words at the hospital as she stared at Max lying in an incubator: “MY children weren’t like that.” OMG. This relative has never gone out of her way to help Max or me. Maddening. But, I’m lucky to have a mom and sis who care (my dad’s elderly and unable to pitch in).

As for Sabrina, do you do anything specifically for or with her to make her feel special out of guilt (or feeling badly) for the care and attention Max receives? If so, can you expand on that a little bit?

I do special things for Sabrina because I know she feels that her big brother gets a lot more attention, which he sometimes does. However, I have said before that sometimes Sabrina is the needier one of my children—she is far more stubborn and less easygoing than Max is! I recently had the opportunity to take a trip with her for bloggers, which was great! That was a biggie, but every week I try to do special things with her. Some nights, I’ll put Max to sleep first and then we’ll read together. Or Dave will take just her to the pool or to get ice-cream. This also gives Max one-on-one time with me and Dave, which is good for him too. What’s not good is when I forget that she’s five and I take her on an errand with me to Target and she wants me to buy her every single thing in the store.

What about for the family…what are some of the obvious things that have changed (because of a child with special needs) and what are some of the subtle things that are different that your friends and family wouldn’t think about?

Max was our first child, so we’ve never known a family life without having a kid with special needs. I think that becoming a parent means you have significantly less time for yourself (UNDERSTATEMENT ALERT!!!!). As a parent of a kid with special needs, you have even less time than other parents because there’s just so much more to juggle. That said, I am not sure friends and family realize the joys Max brings us. I think they feel sorry for us a lot of times, but let me just say that Max’s giggle could be marketed as a cure for depression. It is seriously better than Prozac.

How do you and Dave stay connected as a couple?

We have no qualms about hiring babysitters and getting out on Saturday night or even the occasional Sunday night. Sometimes, we’ll even have a sitter on Saturday morning, just so we can spend some day-time together. On occasion, we’ll sit on our deck at night, have a glass of wine and talk about our day. Or sometimes, he’ll make me dinner. LOVE that. I hope you are reading this, honey.

(Before you read on, go to Ellen’s blog and read this post about “How a kid with special needs affects your marriage: extreme honesty”)

Can you share some tips on how you make things work for your family in general? What’s your secret to happiness (and raising a child with special needs)?

My husband and I are good about sharing responsibilities and working with each other’s strengths. For instance, I’m good at researching things, so I’m often the one to figure out new equipment for Max or find new therapists; Dave is better at feeding Max than I am, so he often does that (he has approximately a billion more times patience than I do). We try to have a healthy social life, which is good for the kids and good for us! We’ll have weekend BBQ’s with friends or meet up at fun places like science museums. Sometimes, we’ll double date with other couples. Having fun makes life more stress-free. So does not beating yourself up about stuff. Dave and I know that we are doing the best we can, and that some days, we are not the most perfect parents but in general, we’re fine. As for my secret to happiness, I don’t have any one genius thing to share (if I did, I think I could be very rich!) but I will say there’s one thing that always gives me a bliss boost: Kissing my kids. No matter what kind of crappy day you’re having, or what kind of a mood you’re in, kissing your child suddenly makes everything feel so much better.

Love That Max is up for a Parents Connect award…go and vote for her!

To follow Ellen on Twitter

She also writes for 5 Minutes for Special Needs and Hopeful Parents, sites I also love, so be sure to check out her posts there as well.

Cuts to home care services devastating for people

July 22, 2010 in Special Needs News by Admin Dawn

Sharlene Curnow broke down in tears when she saw the e-mail from her caseworker explaining that state budget cuts would leave her family without the help they have been depending on for her severely disabled 3-year-old son, Michael.

“Without these people in our life, I don’t know if my husband and I would be able to stay married, because of the stress it causes our relationship,” said Curnow, 36, a customer care representative for a cell phone company in Salem. “No matter how strong a foundation you have prior to having a child with disability, nothing prepares a couple for the stress that comes along with this.”

read more at Cuts to home care services devastating for people – BusinessWeek.

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