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My 5 year old has sensory processing disorder and autism. Her biggest challenge is not being able to speak. She’s making progress, but she’s far behind.  This combined with autism makes it hard for her to socialize and make friends.  A lot of people also think not being able to speak properly corresponds to a level of intelligence, which is not necessarily true.  Her sensory issues make it difficult for her to feel comfortable in clothing.

My 8 year old has Mosaicism, which is a rare form of Down syndrome.  She has never had the typical health or speech delays of many children with Down syndrome, but she is below grade level. She makes up for it with enthusiasm, a cheerful spirit, and a sense of daring.  She does, however, have difficulty focusing for the time a typically developing 8 year old does.

Describe what a ‘normal’ day is like for you as a mom of two kids with different special needs.

Amelia is in the 2^nd grade, so her day is similar to any other child’s, with the exception of getting  picked up for school at the door, and having to still have a solid reward

system in place for her to do her homework.  A lot of repetition is required, but she is making great progress, and many of her routines are down-packed, like getting ready for school or bed.

Zoe is still in preschool and gearing up for kindergarten.  Her sensory issues mean we have to enforce strict guidelines that she be fully dressed even if she is in the backyard. Of course, we let her be comfortable at home as long as she wears underwear.  A lot of repetition, redirection and guidance are needed throughout the day to keep her on task.  Sometimes, she has an off-day (don’t we all?).  When that happens, we find ways to manage her tantrums or fits of sadness by giving her a lot of space, time to be alone, and baths, which calm her.  We also need to keep an eye on her because she mouths a lot of objects still at her age. (Oral sensory input is stronger for her than tactile input.)  Finally, we also need to keep small, shiny objects, like paper clips and tweezers, away as she like to chew them and hide them away.  (Do not even ask about the wedding band I lost!)

That said, we do not allow them to keep us inside.  Bad days aside, we bring our kids to theme parks, restaurants, parks, movies, pools…we want them immersed in a typical kid life, and even on rough days, I think they appreciate it.

The biggest misconception about these difficulties is that this is a difficult, painful, life with little chance for happiness and no hope.  In fact, Amelia taught me more about smiling and laughing than I knew before I became a mother!  My kids are happy, enjoy life, and I have great hope for their future.  I accept them as they are, but always looking for ideas and ways to make life easier for them (for example, dietary therapies).

Yes!  Don’t fear people with or children with special needs. Treat them like you would anyone else, the same way you teach them to respect kids from ethnic, cultural and faith groups that are different from the ones your family is familiar with.  And don’t be afraid to ask questions! As a mom, I’d rather have a child ask me about my children than point and talk about them without interacting.  My kids are just like others in that they, too, want to have fun, make friends, and share a laugh. They probably have a lot in common too – they both love to swim, and Amelia loves to play sports games on the Wii.

If you’re in a store or the street, and you see a child over the age of 4 or 5 having a major meltdown, there is a very high possibility that child has autism or

sensory issues (or both) and cannot process the overwhelming input from a store, rather than the “spoiled child” we special needs parents hear about so much.  If you know a mom who has a child with special needs, she has a lot on her plate: a crazy amount of paperwork, extra healthcare and mental care visits, extra meetings at school, possible food restrictions for her child, and more.  In addition, it can take her child a lot more work and effort to learn things from potty training and eating properly to academics and behavior.  Plus, we are always looking for activities our kids can excel at and planning for their futures. So we special needs moms are really tired, and we rarely have time for volunteering, or girls’ nights out, or dates with our partners.  Any helping hand is appreciated, but a smile or a “wow your kid was so good today!” is welcome anytime.

I am much more tolerant of other people, more understanding of parents in general, and more appreciative of life.  I have learned to slow waaaay down.  I’m from New York City, so my life was very fast-paced, and it took a long time to get used the slower paced life of raising a child with special needs.  Once I did, I learned to appreciate the little things.  One thing we special needs parents have is that we can (and usually do!) celebrate the tiniest milestones for our kids…and that has a way of making every day an adventure.

Oh my gosh, just watching my children smile, giggle and laugh over anything: a game, a toy, a tickle under the chin. Their laughter sustains me for weeks!

My kids need a lot of distraction, so I’m always looking for new ways to entertain (just built a fence so I can put them outside daily) and I’m happy they still love old stand-bys (they both love books).  However, I think anything that lets them draw..from sidewalk chalk to a wipeboard, to good ol’ paper and markers..that’s a godsend any day of the week.

I love blogging and writing, and it’s made this an open journey that I can share with others to encourage them on their journey, and teach others who are not on the same path I am.  It’s allowed me to connect and make some very dear friends who are also moms…some with special kids, some not, but all near & dear to me.

Websites:

DOWN SYNDROME

http://www.kellehampton.com/

I keep running into this one, she’s a gifted photographer who has a daughter with Down syndrome and photographs kids with it.  Go and check out her beautiful pictures and her amazing birth story (I cried through when I read a year ago).

An awesome post  by my friend Katrina:

What to say when your friend’s baby has Down syndrome

The other person is you

International Mosaic Down Syndrome Association

National Down Syndrome Society

AUTISM

The Girl Who Spoke with Pictures

Aid for Autistic Children Foundation

Talking about Curing Autism

SPD (Sensory Processing Disorder)

• http://www.spdnetwork.org
• http://www.comeunity.com/disability/sensory_integration/index.html
• http://www.kid-power.org/sid.html
• http://www.sinetwork.org/
• http://www.out-of-sync-child.com/

Books:

The Memory Keeper’s Daughter (fiction)

Autism & Alleluias by Chynna Laird

Movies:

Temple Grandin (HBO)

I’m Down with You (Documentary)

Adam (feature film)

TV:

Glee

Parenthood

Bones

Monk

Thanks for your thoughts Gina!

 

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