Children’s museums can be a fun summertime excursion for families. Since summer will be here before we know it, now’s the time to plan for a successful trip to the children’s museum near where you live.

Thank You Ellen Seidman and Nora Moynihan

Not too long ago, Ellen Seidman of Love That Max asked Nora Moynihan, children’s museum fairy godmother for help. Nora is also the Director of Education and Community Enrichment from the Port Discovery Children’s Museum in Baltimore, so her tips are fairy-godmother-sparkly as well as Director-of-Education-practical.

10 Tips for a Successful Visit to a Children’s Museum

 Here are Nora’s top 10 tips for a successful visit to a children’s museum:

1. Go during quiet times.
2. Check the website for information.
3. Prepare your child for the visit.
4. Talk about potential challenges.
5. Start at an area in the museum that relates to your child’s interests.
6. Let kids linger.
7. Have a nice lunch.
8. Be a regular!
9. You can always call.
10. Review the trip.

Nora explains the details of each tip in her Love That Max guest post entitled More Fun Museum Visits for Kids with Special Needs, They’re well worth a closer look. Her suggestions about when to call ahead and ask questions of the museum staff are particularly reassuring and informative. So much so that the post made me wish our kids were still young enough for a children’s museum visit.

What’s Your Family’s Favorite Children’s Museum?

Does your family like to visit children’s museum? Give it a shout out in the comment box. Or tell us about your family’s favorite summertime vacation hot spot. With lots of empty summer vacation hours to fill, the more ideas the merrier! I’ll start with a shout out for the Living History Farms near Des Moines, Iowa. Our kids loved that place.

Photo Credit: Stock.xchng

Thirty-one years ago today, our first child was born at 12:35 AM on a Sunday morning. Like all mothers, I remember the details of that day at Lookout Memorial Hospital in Spearfish, South Dakota with perfect clarity. But my memories are different than those of many other new parents. The joy of the memory of our son’s arrival is tinged with sadness and gratitude.

I remember breakfast being interrupted with the news that our son was having trouble breathing.
I remember the food going tasteless when the doctor advised transferring him to Rapid City Regional Hospital for tests.
I remember being alone when the pediatrician from Rapid City called a few hours later with a diagnosis.
I remember wishing my husband hadn’t gone to take a shower at a friend’s house.
I remember the doctor saying the words tracheoesophageal fistula for the first time.
I remember telling that stranger to life flight our newborn to the University of Nebraska Hospital in Omaha for immediate surgery.
I remember crying so hard my husband could hardly understand my words when he returned.
I remember him taking my hand and praying for our son while tears streamed down my face.
I remember when the call arrived that our son had survived the trip.
I remember the surgeon calling at midnight to say Allen was doing well after surgery.
I remember my relief and more tears when once again, I relayed the doctor’s words to my husband.

For thirty years now, I have relived the events of that day every May twenty-third. I glance at the clock throughout the day and think the same thoughts.

This is when the doctor interrupted breakfast.
About now, the call came from Rapid City with a diagnosis.
Allen took his first airplane ride on an afternoon like this.
He went into surgery about now.

The rest of this post can be found at www.Not-Alone.org.

A letter of intent is a document parents need consider while creating a special needs trust for their children. One chapter of Different Dream Parenting: A Practical Guide to Raising a Child with Special Needs deals exclusively with special needs trusts and briefly mentions letters of intent. But a post at Friendship Circle of Michigan discusses letters of intent in detail.

Meet Sheryl Frishman

Sheryl Frishman, author of the Friendship Circle guest post, is counsel to the law firm of Littman Krooks LLP. She’s also a co-host of the Family Network TV show “It’s a Matter of Law,” a show that covers legal aspects of having a child with special needs. She’s the mother of three children, one of whom has autism.

Letter of Intent: 10 Items to Include

Here are the 10 items Frishman recommends including in a letter of intent.

1. Details of family history.
   
2. General overview of your child’s life so far.
3. Summary of educational experiences and desires for future education.
4. Employment possibilities for the future.
5. Residential environment and living arrangements.
6. Social activities your child enjoys.
7. Religious environment and desires for your child.
8. Medical care details.
9. Behavior management program explanation.
10. Final Arrangement information.

Frishman says parents can add other information in the letter of intent, but these 10 are crucial. More information about each of these 10 tips as Frishman’s Friendship Circle guest post, The Top 10 Items to have in a Letter of Intent.

What Special Needs Documents Do You Have in Place?

Have you prepared legal documents for your child with special needs? Which documents do you have in place? What are you working on? What questions do you have about the process? What would you add to the list of documents to include? If you have answers to these or other information about special needs trusts and letters of intent, leave a comment.

Karen’s daughter, Samantha

Rejoicing in our kids with special needs is often mingled with grief when the milestones they meet are quite different from their peers. My friend, Karen Jackson, is here to describe how she responded in one such occasion. Karen is the Director of Faith Inclusion Network (FIN) of Hampton Roads, a non-profit organization devoted to the better inclusion of people with disabilities into faith communities. She’s also mom to three kids, one of whom experiences autism.

Let Us Rejoice!

Today at Mass, fifteen beautiful young children received the Sacrament of First Holy Communion.  They were impeccably dressed in miniature suits for the boys and delicate while dresses for the girls.  Many of the girls even wore flowers in their hair, as is traditional, and a professional photographer was on hand to take individual photos of each young person with our Pastor.  This was a special moment in their lives as Catholics to be sure, and a celebration for our whole congregation.

Rejoicing in Milestones

While these families celebrated this special time for their second graders, I silently and joyfully celebrated a special moment in time with my only daughter Samantha.  Because today, after more than six years of preparation, advocacy in our church and a succession of “almost” and “not-even-close” experiences in worship, my precious 15 year old daughter with autism sat in the sanctuary with me for the entire Mass, beginning to end.

Rejoicing in Milestones on the Spectrum

For those who have children on the spectrum, I probably do not need to say much more than that.  For those who do not live with or work with children with autism, let me try to explain.

For lack of better terms, Samantha falls under the moderate to severe part of the Autism Spectrum Disorder.  She does not have exceptionally aggressive behavior, for instance, but she is severely limited in her ability to communicate.  Sitting still has also been a challenge and, although she loves to sing snippets of her favorite songs, or just vocalize in a sing-song way, she exhibits very little control of her impromptu vocalizations.  Therefore, it is very possible she might belt out “I love, you, you love me, we’re a happy family”, (Barney theme song) in the middle of a very quiet moment at church.  (And she has actually done exactly that before).

So today, I quietly celebrated a small, well no, actually a big victory.  Instead of sitting in what is essentially considered the traditional “cry room” area, where parents bring babies and toddlers, I boldly led Samantha into the sanctuary.  Of course, this was not the first time we had tried.  On a good day, we might make it through to the homily, (about 20 minutes into Mass) and then sneak out, just in time, as she started to get restless and be a little too loud.

But today she remained calm and we settled into our pews; her older brother at one side of me, Samantha tucked in close to me on the other side.

Rejoicing in Corporate Worship

I had completely forgotten how amazing it is to be in corporate worship at our church.  Music from our organ, choir and hundreds of fellow parishioners surrounded us, engulfing us with the soothing and exiting sounds of traditional hymns.  In the cry room area, the music is heard mainly through the speaker; beautiful yes, but not the same experience.
And the prayers! Again, I was overcome by the strength of hundreds of voices speaking in unison, declaring our beliefs as Catholic Christians, reciting prayers, raising our voices as one.

It only took a short glance over at Samantha to recognize that she was affected by the experience as well. She smiled, rocked to the music, strained to see what was happening at the altar and exhibited a heightened awareness of her surroundings.

After the homily, I began to get nervous as Samantha was getting fidgety and kind of silly.  She was trying to engage me in a game by repeating my “shh…quiet” with a no-so-quiet “qui—et” repeated back to me.  But as I struggled to calm her down and resist the temptation to pull her out, I caught the eye of a fellow parishioner who was smiling at the scene.  In the past, I had experienced those “looks” (you know what I am talking about) or even stares that convey at best confusion and at worse, judgment.  I was encouraged by this woman’s smile.  Samantha and I persevered.

Rejoicing in Communion

Soon it was time to participate in communion and we dutifully got up and followed our row toward the front of the church.  Only a minor glitch, we were not on our Pastor’s side of the church and Samantha will only take communion from Father Joe if he is there.  So we had to “jump” lines, but no one even seemed to notice.

We got back to our pew and I struggled to overcome my emotions.  Tears fell down my face as I realized that we would actually make it through the whole Mass, like any typical family!  Could it really be so?

Yes, as the last hymn rang out we again enjoyed the experience of being awash in music one last time.  And as those young children, having received their First Holy Communion, filed out ahead of our Pastor, I quietly rejoiced in an important first of our own.

This may have just been one in many, many Sunday Masses to come, but I will never forget it.  My daughter is growing up and growing in her faith, as am I.   Alleluia, Alleluia.  Thanks be to God.

“This is the day that the Lord has made, Let us rejoice and be glad in it.”
Psalm 118:24

What Milestones Have You Rejoicing?

Has your child reached a long awaited milestone lately? Leave a comment so we can rejoice with you, too!

Support for parents of kids with special needs should be ’round the clock, but most special needs support businesses and organizations aren’t open 24/7. That’s a bummer for parents raising  kids with special needs because we all know the majority of parental meltdowns occur in the middle of the night or the wee hours of the morning.

Meet Cherie Castellano

But thanks to Cherie Castellano, parents in New Jersey can now call the Mom2Mom Special Needs Helpline any time of the day or night. Castellano, a licensed mental health counselor and mother of two sons, conceived the idea when she had some challenges with her own children. First, she started a church group and began counseling mothers of kids with special needs kids. She realized parents were so busy meeting their kids’ needs, they were neglecting their own needs in the process.

24/7 Support for Parents of Kids with Special Needs at Mom2Mom Helpline

According to an article at www.nj.com, “Mom2Mom, coordinated by the University of Medicine and Dentristy of New Jersey’s University Behavioral HealthCare provides peer support, telephone assessments, a network of referral services and support groups for moms dealing with autism, physical and mental disabilities and cancer.”

Castellano received a grant award in 2010 from The HealthCare Foundation of New Jersey. The service began in Essex and Union Counties and by January of 2013, had expanded into all of New Jersey’s 21 counties. Castellano says, “We now have 21 (counselors) with kids that have cancer, autism, Down syndrome, epilepsy and mental illnesses covering the phones 24-hours-a-day,” Castellano said. “These woman are so excited to get on the phone and out into the community.”

To read all the details, check out the article Mom2Mom Brings 24-Hour Peer Support to Special Needs Moms. Maybe it will give you ideas about how to get the ball rolling for something similar in your state. Wouldn’t it be great to have 24/7 support all over the United States?

Other Parent Suppor Helplines?

Do you know of other helplines already in existence? If so, pass along the contact information in the comment box. It could be just what some other DifferentDream.com parent is about to meltdown in the middle of the night.

Photo Credit: www.freedigitalphotos.net

Special needs parenting has much in common with parenting typical kids, but it has many differences, too. In a Parents.com post, Ellen Seidman (who also blogs at one of my personal faves, Love That Max), uses a Pew Research Center major poll, Modern Parenthood: Roles of Moms and Dads Converge as They Balance Work and Family, to aid her comparisons.

Special Needs Parenting Comparisons from Ellen Seidman

Here are three favorite comparisons from Ellen’s original post:

Poll stat: 53 percent of working moms and dads polled with kids under age 18 say it’s difficult to balance job and family responsibilities

Special-needs parent fact: Given the additional medical appointments and therapies moms have to manage, I’d say that work-family juggling challenges are significantly magnified for parents of kids with special needs. Not a day goes by when I don’t think “Wow, this is hard”—and marvel that I haven’t run screaming down the street because I’ve finally lost it.

Poll stat: 73% of moms say they are doing an “excellent” job as a parent

Special-needs parent fact: I’m a good parent and yet, I never think of myself as doing an “excellent” job with Max. This is because there is always something I feel like I could be doing with him—some therapeutic exercise, say, or trying a new app that could help improve his reading skills. With so many parenting resources these days, perhaps a lot of mothers feel this way—but when you’re the parent of a child with significant delays and challenges, you truly never feel like you are doing as much as you could. So if you ask me what kind of job I do as a parent, I’d say “Good enough.” Because that’s the best I can do, and I have learned to be satisfied with that.

Poll stat: 43% of married moms say they are very happy with their lives

Special-needs parent fact: The world may perceive us as being unhappier than other parents. And yes, we may very well have more pressures and stress. But the truth is, we get just as much bliss in our children as other parents do from theirs. They may have special needs, but they are not “defective.” They are our children. In fact, our happiness can be that much greater because our kids work so hard for their achievements. The first steps my son took at age 3 weren’t just milestones—they were miracles.

Special Needs Parenting Comparisons from You

You can read the rest of Ellen’s comparisons at How Special Needs Parenting Compares to Typical Parenting. Then come back and leave a comment about how you think special needs parenting compares to typical parenting. I’d love to hear what you have to say!

Photo Credit: www.freedigitalphotos.net

Inconvenience or an invitation from God? Which word describes your view of parenting kids with special needs? That’s a question guest blogger Michelle Selent has been praying about lately. Today, she’s here to explain how her prayer was answered.

Inconvenience or Calling?

I have something on my on my heart tonight. Some areas of my life, like my new business, I have been completely enamored with. Just so delighted by the experience. Then other things have been quite the contrary. I have even been a little miserable with how some areas have been playing out. Especially when it comes to areas of parenting special needs.

Some areas I have felt like I have kind of lost myself in the shuffle. I will try my best to explain. I used to be more purposeful. Especially in areas of my family. We used to have regular outing with the kids one-on-one so they knew their individual importance and didn’t get lost in the crowd. We used to have family meetings once a week so we just stayed connected as a family unit. As responsibilities in our family swelled those occasions became less frequent and some months non-existent. Things that at one point I considered part of my calling inconvenient.

We missed church recently because 2 of our 6 were down with fevers, so we watched our pastor preach the 4th message of his series online. It was just what I needed, exactly when I needed it. I had been struggling with why couldn’t I get back to my default setting. Where had my purposing gone?

The pastor posed this question: Are you consumed with your calling or with your convenience?

Consumed by Convenience or God’s Calling?

Yep, it sorta took my breath away. I think sometimes you can get worn down, and you call things like you see them and not how God sees them. Do I see what God has put before me as an interruption or as an invitation? Do I call what is before me overwhelming, too hard, monotonous, or do I call it how God sees it? An invitation to see his power. An invitation to my calling.

Pastor said something to this effect: Misery is inevitable anytime convenience is your consumption and God will consume your convenience to get you consumed with his calling.

So there it was. All the areas where misery was creeping in was my own consumption with convenience. My own calling things as I see them. I am welled up right now as the whole thing settles on my heart. I have been praying over certain areas for quite a while, and I have had the wrong perspective the whole time.

Father God forgive me.  I have been consumed with my comfort and my convenience. I felt interrupted and I missed invitations. Help me where I am weak and show yourself strong. I don’t want today’s excuses to become tomorrows regrets, dressed in disguise. Turn my misery into ministry. Thank you for you faithfulness to redirect. Thank you for your redemption. You have blessed me! I am calling it like you see it. Consume me with your calling. I don’t want to miss the invitation.

What Consumes You?

Thank you, Michelle, for being so transparent about your struggles. It’s an example for the rest of us who need to confess what consumes us, if we’re brave enough, in the comment box. And check out Michelle’s website at www.60littlepiggies.com.

Special needs parenting blogs are all over the web these days. Back in the olden days, parents had a hard time finding blogs that spoke to their circumstances. Now the challenge is to wade through the flood of choices to find the really, really good ones.

5 Special Needs Blog Recs from Not-Alone.org

Thankfully Mike Woods is all over the situation. Not only has he rounded up 20+ special needs parents to blog at Not-Alone.org,  myself included, but he also featured several other topnotch blogs and reviewed them in one of his posts. Here’s a quick run down:

• A Perfect Lily by Patti Rice. Patti’s blog was started during the pregnancy of her tenth child, Lily Anne. Lily’s birth, diagnosis, and life have already made a profound impact on the Rice family and the lives of those around them.
• 60 Little Piggies by Michelle Peterson Selent.  Michelle’s been married to her best friend for the past 21 years. During their journey together they have been blessed to be the parents of four amazing sons.  They also fulfilled their dream of becoming adoptive parents as well, to two beautiful daughters, both with fetal alcohol syndrome.
• Diving For Pearls by Katie Wetherbee. Katie currently serves as the Special Needs Columnist for Children’s Ministry Magazine and she’s also a freelance writer. She is always delighted to talk with parents of children with special needs; this is a journey that Katie shares from personal experience.
• Life With Jack is by Jessi Bennion.  Jessi is at home in Montana with Jack  and says the road of parenting a micropreemie is never easy, but it is oh so worth it. If you have a preemie or want to learn more about prematurity, Jessi welcomes you to stick around awhile.
• Life With The Loraines by Erin Loraine.   After 4 great years on the Family Life staff, serving from Little Rock, AR, God called them back “home” to Missouri to be near family as we raise the “Fab 4″! 2 of the Fab 4 have special needs.
• This Journey Our Life is by Rachel Cordeiro.  Rachel’s oldest child has a variety of needs surrounding her visual impairment (resulting from her severe prematurity), ASD, and mild intellectual disability. She blogs and shares her personal journey of special needs parenting, encouraging others who find themselves on a similar path.
• The Works of God by John Knight.  John is married to Dianne and together they parent their four children: Paul, Hannah, Daniel and Johnny.  Paul lives with multiple disabilities including blindness, autism, cognitive impairments and a seizure disorder. John blogs on issues of disability, the Bible and the church.

Mike shares more information about each blog at his post I Get By with a Little Help from My Friends, so check it out. Also, you may have noticed that Michelle and Rachel are also guest bloggers here at DifferentDream.com. How cool is that? Regular readers may also think Katie Wetherbee’s name is familiar. That’s because her blog’s been recommended here before. Every one of these bloggers, as well as the guest bloggers at Not-Alone.org, offer both practical tips and spiritual support from a Christian perspective to other parents of kids with special needs.

Your Favorite Special Needs Blogs

Of course, many other great special needs parenting blogs exist. Now’s your chance to provide a link to your personal favorites in the comment box. Don’t forget to include your own blog, if you have one!

Photo Credit: www.freedigitalphotos.net

Sensory sensitivity is a part of the lives of many kids with special needs. That means sensory sensitivity exposure is part of the lives of their parents. Parents like guest blogger Rebekkah Benimoff and her sister-in-law, Stephanie, who have learned to manage sock strings and sensory sensitivity with grace.

Sock Strings
or
Managing Sensory Exposure With Grace

by Rebekah Benimoff with Stephanie McIntyre

For moms of sensory sensitive kids, daily life is filled with many strategies for helping our precious kiddos manage sensitivity to noise, crowds, touch, smells, textures, bright lights, bothersome clothing, and new experiences–any one of which can be distracting, but when combined, are often overwhelming.

My son was not diagnosed with sensory processing disorder until he was six, but my nephew was diagnosed at about age three. Every now and then my sister-in-law Stephanie and I get a chance to share notes.

We both work daily to stay ahead of known triggers. Like cutting sock strings before breakfast. Or making sure that the winter coat is not too puffy or restricting. Or giving “brother breaks” so one often overwhelmed sibling of a sensory kid can have some time to desensitize, too.

For us, this is a day in the life of a mom. It’s what we do because we love our kids. We do it without thinking or lamenting (usually). We don’t compare what we go through to others because we know the special gifts in our life are exactly what God has (or will grow us to be) equipped for. And while it is important not to compare journeys, it is also important to give ourselves credit for how hard we work to take care of our kids–because we love them.

Sometimes, we do not even realize all the extra things we do to help our children. The differences in care giving strategies bleed into each other, and we don’t quite appreciate all we manage. But it is important to acknowledge the good work we do. We parents work hard–and while we may have regrets over what we sometimes miss, it is important to give ourselves credit for all the things we don’t miss.  We need to seize grace daily–and more than once a day. Parenting is not easy. There are difficulties to work through, and times when we struggle due to caregiver’s fatigue. When confronted with feelings of failure and inadequacy, or medical issues that cause us to feel broken, commending ourselves can build up deflated spirits.

Recently I checked in with our family counselor. We talked about the diagnoses I manage as a caregiver. And our closing thought was this: I deal with all this–and I do good!

I forget this sometimes. I forget to appreciate all that I carry, to give due credit, realistic understanding that life with any special issue is, at times, a challenge. Talking with other parents who understand helps. It is also good to take personal time to recognize how much extra I really carry and to give myself abundant grace for where I missed the mark, focusing instead on the TRUTH that I work hard. It is so important to give myself permission to be congratulated on a job well done.

So, from one special needs caregiver to another, permission is granted, here and now to appreciate yourself. Take time today to look lovingly at all the extra special care you give and celebrate that YOU DID GOOD!

How Are You Doing Good?

What remarkable, unique ways do you do take care of your family? What do you do to take care of you? Do you take time to appreciate your hard work, and a job well done? For more of Rebekkah’s writing, visit her website, www.justmemama.com.

Language–the words we choose to use when working with people who have special needs–is a powerful tool. Thoughtful language can redeem circumstances and heal hurting hearts. Thoughtless language, even without the intent to harm others, can damage situations and wound tender souls.

Meet Adrienne Smith

The importance of loving people with special needs through the language we choose to use is the subject of a post by Adrienne Smith over at CentriKid Camps. She’s worked at CentriKid Camps since 2012 and is passionate about special needs ministries.

10 Ways to Love with Language

In her blog post she lists 10 ways to love adults and children with special needs by paying attention to language. Here’s her advice:

• Always use “person first” language.
• Use the word “accessible” rather than “handicapped” or “disabled” for architectural modifications.
• Say someone “uses a wheelchair” instead of “confined to a wheelchair.”
• Don’t use the term “crippled.”
• Don’t assign negative labels like “disadvantaged” or “unfortunate.”
• Show children with special needs the same respect you show to other kids.
• Instead of calling kids without disabilities “normal” or “healthy,” call them “kids without disabilities.”
• Whenever possible, communicate directly with the child rather than with the caregiver or parent.
• Use respectful terms like “learning disability,” “intellectually or cognitively delayed” rather than “retard,” “slow,” or “mentally handicapped.”
• Always ask before assisting a child or adult with a disability .

Adrienne explains each suggestions more thoroughly in the original post, so check it out at Special Needs Kids Ministry: Loving with Language.

What Loving Language Do You Recommend?

How to use language to love people with special needs could be a week-long series, don’t you think? But since the blog schedule’s already full, I invite you to share your loving with language recommendations in the comment box below. Tell us what loving language you recommend and what hurtful language needs to be eliminated. Thanks!

Photo Credit: www.freedigitalphotos.net