"mama"

In the dictionary, mama is defined as baby talk for mom. What about when it takes 28 months to hear that word? Is it toddler talk?? With each child, mommies cannot wait to hear their children call them by name. "Babies are born to say mama" This usually happens around 6 months old. This mama has been waiting 28 loooong months to hear Niles call me mama. Around 6 months old I did what every other mommy does I held him in my lap saying "ma-ma-ma-ma-ma-ma-ma-ma-ma-ma-ma" (all mommies do that don't they?) We were still doing that at a year, by 18 months I told myself he would say it when he was ready. Some boys are late talkers....... right???? By two I knew something just wasn't right. That is when I got Early On involved. After a month of working with his therapists, it happened!!! What I had been waiting all these looong months for, what I had almost given up on. He said "mama" and with purpose!!! It was music to my ears! It made my eyes tear up! It was a taste of victory!!

Noah the entomologist

With the unseasonably warm weather we have had lately has come the early arrival of BUGS. Noah has had some odd fascination with bugs for some time now. He becomes entranced and obsessed with them. He is content sitting and watching an ant colony busy at work. He will observe the flies flying around and the worms slithering through the mud. Just don't let any of those bugs get ON him! That sends him into a tizzy, although it can be quite humorous watching a 14 year old boy freak out over a bug. I think it is the idea of a bug actually touching him that gets him going. Now along with his bug fascination comes some pretty interesting things out of his mouth. While the neighbor is outside working on something, "hey mom, I think we might have a cockroach problem"... ummm no Noah those are just Japanese Beetles. We had a small fruit fly in the kitchen the other day, so when Noah noticed a hole in the screen, "hey mom, now I know where our bug problem is coming from" I didn't know we had a bug "problem" but then I realized that they may not be a problem for me, but they are for Noah. And that is okay even though the way he expresses it can be a bit embarrassing. I have never seen someone so horrified, but at the same time intrigued by something.

R-E-G-I-O-N-A-L-S.....

Nathan is headed to the regional spelling bee in Jackson tonight after winning his school spelling bee. He has been carrying the dictionary around with him for the last month studying random words. He has worked hard and has been looking forward to this day for a while. Unfortunately since he has to be there (about an hour away) before James gets out of work, I had to miss out on taking him. Niles and Noah both have issues with being in crowds and having to sit still and quiet, so we avoid those situations like the plague. But luckily my mom being the great supportive grandma she is offered to take the time off work to take him for me so he wouldn't have to miss out. I have learned that having a large family with kids with special needs I need to ask for help sometimes. My mom was more than happy to help out.

When Mommy's Hugs No Longer Fix Everything....

One of the best things about being mommy to a toddler is that mommy's hugs and kisses can fix whatever is bothering them. How I wish I could lift my teens spirits with the "tickle monster" and lots of kisses. It just doesn't have the same effect as they age. When toddlers are upset they instinctively reach for mommy to pick them up and hug them and make everything better. They scrape their knee and mommy's kisses fix it up. By nature, mommies are fixers, it is in our instincts to take care of our young. Niles was especially snuggly and cuddly from an infant. He was very easy to calm and appease... until recently. My happy little guy seems to always be upset about something. He doesn't have the language to tell me what is upsetting him. When  he is upset, I can't even pick him up, he won't even look at me. He would rather bang his head on the hardwood floor than get a hug from mommy. How does that make me feel? It makes me feel like a failure, it makes me feel like I can't take care of him like I should. I want so badly to hug him and cuddle him and make it all better, but he wants no part of that. So now we need to move on and find something to replace mommy's hugs and kisses with. What will calm him if mommy can't? We are in search of that right now.....

we actually "belong" at playgroup

One of the parts of Niles' therapy is going to a weekly playgroup. Today was our first time going, and I have to admit I was very uneasy about the idea of having him go to a structured playtime where he would have to follow directions. After being made to feel unwelcome at story time with Niles and the countless activities throughout Noah's toddler years, there is nothing worse than the feeling of anxiety about having to take Niles anywhere where he will have expectations to follow directions, participate and even behave. I built up the courage to get ready and go... I had no idea what to expect. I had promised his occupational therapist that we would be there so she could observe him, so there was no backing out. Turns out all the other kids there were a lot like Niles and the ladies who run playgroup have every trick in the book to capture the kids attention. We go in and are directed to the carpet, thinking to my self "there is NO way he is going to sit on the carpet for more than 30 seconds" I decided we will try it. Turns out they have several different "chairs" and things to sit on. Plus they have fiddle toys! Fiddle toys! What a great idea! This ball kept Niles' attention while we did a welcome song. Then the singing was done and that transition was hard he got up and I was mortified. I was just praying that he would miraculously sit down. Then I noticed there were several kids up and wandering at this point, some were even spinning like Niles. My anxiety dropped instantly. The teachers went over the activities that were available today. They get to do what they want at their own pace... that's not so bad. Niles played in the corner with a bead toy, wishing he would interact more I noticed that the only kids even close to interacting were the ones excited over the slide. Now being excited over a slide is a different kind of excited than some people are used to, but it was okay, the moms all understood! We were understood, we were accepted and we can't wait to go back!!

Just an ordinary day... or is it?

I have recently come to realize that what our family considers ordinary is anything but that for other families. Most families start their Sundays going to church. We were once this ordinary family, until we were told that Noah could not attend Sunday school even though I was in there helping to teach the preschool class. I was actually very involved at one time. Feeling completely hurt and abandoned by the church we stopped going. Sadly it has been around 10 yrs since we have felt that we could belong to a church. It's just one more place to go to have people judge you, your children and your family because your child is different. And trust me we get enough judging!! So no church for us on this Sunday morning; instead we decided to take advantage of the free movie playing at the local theater. Now most families would ordinarily take the whole family... not us! Niles cannot sit through an entire movie without disturbing other people. Noah does not like the loud speakers although he can tolerate it if it is a movie he really wants to see. So what is normal for us is for one of us to stay home and one of us to go and let the kids decide what they want to do. So today it was James who stayed home with Noah and Niles and I went to the movie with Nathan, Natalie and Nicole. During the movie I only had to rub Nicole's legs twice. Due to her EDS she gets muscle spasms in her legs when she sits for long times. It is hard for her to sit still but is manages with massages from mommy or daddy. Again this is normal for us, it is normal for me to carry lotion in my purse for impromptu leg rubs. So after the movie we go home and make frozen pizza for lunch. Oooops! I accidentally bought all pepperoni and sausage; Noah does not like the texture or taste of sausage. We normally buy plain pepperoni for him but somehow I misread the labels. He settles for peanut butter and jelly sandwich. :( Pepperoni pizza is his favorite food. I know lots of families could have avoided this situation by picking the sausage off or just insisting they eat what is put in front of them. Noah's dislike of certain textures is normal to us, we keep extra things on hand so he doesn't go hungry when the rest of us eat something he can't handle. After lunch we decide to go shopping for some things we need. First stop is K-Mart, they have bedding sets on sale and well, we ALL need new bedding sets. We walk in and put Niles in a cart and he loses it, he is overstimulated. Thinking on our toes, James runs to the checkout to get a sucker for him. If we are going to get any shopping done he needs something to redirect his attention. The sucker does the trick! We all pick out new bedding sets, except Nicole. We decided Nicole did not need one since her bed is rarely used anyway. WHAT!!!??!! you say. Yes Nicole sleeps in bed with mommy. What ordinary family bedshares with their 5 yr old??? Well, a family whose 5 yr old wakes up many times throughout the night in pain crying and needing her joints squeezed and or massaged. Just rolling over in bed can throw a joint out of place. So we told Nicole we would find something else for her. What does she pick? .... anyone who knows Nicole can guess what she wanted... a HIPPO! Well K Mart officially had no hippos. I remembered seeing a hippo storage cube in the Target ad that was super cute, so we head off to Target to look for it, and other stuff too.

ASD, EDS, BJHS, PDD, SPD, ADHD ~ what's in a label anyway?

When our children are having difficulty, we naturally want to pinpoint the cause. Was it something I did to cause this, did something happen to my child, or is it genetic?? Sometimes these answers do not come so easily; sometimes they take lots of persistence and patience to unveil.

"Why would you want to label your child?" I have heard this question more times than I care to remember. Doesn't everyone have a label? I am a girl, I am a mom, I am tall... those are some of my labels. Just because a child has a label it does not mean that label defines their whole being. They are more than their label, they are individuals with individual needs. This label allows them to get all the help they can for their difficulties. It allows me to know what they need and what to expect from them. Their labels allow me to help them get the most out of life. Their label does not hold them back, it allows them to move forward.

Some of you may wonder what some of these labels are. ASD, EDS, BJHS, SPD, PDD, and ADHD are the one that effect our family. Lets start at the beginning.

Meet little Noah one year old here. He was our first experience with a label. Noah was a smart interactive baby and toddler until he hit two and began to regress. He lost all his language skills and disappeared into his own little world. Of course his body was still there but something had taken my sweet little boy's personality. Shortly before his third birthday, he got his label. ASD ~ Autism Spectrum Disorder. The label/diagnosis was the first step in a long journey over the next several years.

Our next label was for Miss Nicole. After 6 months of being in pain daily momma bear had to fight for her to get seen by the right doctor who diagnosed her first with BJHS ~ Benign Joint Hypermobility Syndrome. Later she got the label of EDS type 3 ~ Ehlers Danlos Syndrome type 3. While some doctors (including ours) believe that BJHS and EDS type 3 are one and the same, they are both very similar regardless and treated the exact same. This label allows us to know that her joints are going to hurt and what to do to prevent it as much as we can as EDS is treated differently than other joint pains. Oh and Nicole doesn't get off with just those labels she also gets the ADHD ~ Attention Deficit Hyperactivity Disorder. The ADHD is pretty well managed by cutting out red food dye and sugar. I call it red dye and sugar induced ADHD.

Niles is hopefully our last label. He is following in big brother's footsteps. He is showing many of the red flags for autism. We are working on getting evaluations and working with professionals to get the right label for him. So far he has PDD~ Pervasive Development Disorder and SPD ~ Sensory Processing Disorder. Although I am sure he will end up with the ASD label.

Getting an accurate label is very important to be able to do EVERYTHING you can to help your child deal with their difficulties.

That is why I would want to label my child.