Dear Mommies – cut yourselves some slack


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It seems like pretty much every married female friend I have above the age of 25 is either currently pregnant, trying to get pregnant, just had a child or has had a child within the past two years.  They all come from different places.  Some are doctors, some are teachers, some don’t have a career at all.  The only thing that seems to unite every single one of them is an over-riding sense of guilt.  At a quick glance on Facebook at any given time I have friends questioning everything about their lives: their diet, the diet they feed their children, the music they listen to, whether they should begin/re-start cancer treatments or anti-depressants, how they should handle discipline, whether or not to breastfeed and for how long, the list is literally endless.

As a frequent practitioner of this same guilt I truly understand where they’re all coming from.  I was that person who watched every single bite they ate while they were pregnant, took my vitamins every single day, gained the exact “right” amount of weight and did everything exactly by the book.  My general rule for myself was that if, god forbid, something were to go wrong, I didn’t want to be able to blame myself.  Well, something did go wrong, and unfortunately despite the fact that it was absolutely nothing I personally CHOSE, the thing that did go wrong had everything to do with me, specifically my genes.  Obviously this was completely devastating to a control freak like me.  But at the same time, it was oddly liberating because it taught me the cold hard truth that even when you make all the “right” choices, there are some things that are just out of your hands.

So it is from that background that I can pass on this advice today.  Make the decisions you need to make, parent the way you want to parent and stop feeling guilty that you are somehow screwing up your child for all eternity simply because one night a week they eat chicken nuggets or watch Dora the Explorer or whatever.  Chances are, even if you picked the other direction, you would be able to find SOMETHING to blame yourself for.  So give yourself a break and stop feeling guilty.  When it all comes down to it, in the end the only thing your child is truly going to remember and grow from is the amount of love you give them.  If they know without a doubt that they are loved, that covers a lot of bases.  The most messed up adults I know (myself included) are the people who can’t tell you for absolute certain that their parents loved them.  Make sure you have this covered and the rest is just details 🙂

By the way, I expect that most of you will probably ignore this advice.  Goodness knows, I probably would have.  However in your moments of doubt, you can think back and remember that somebody out there gave you permission to cut yourself some slack.


Play and learn – toys for sitting


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The first sign for us that things were not progressing normally for Elijah is when he reached 8 months old and still wasn’t even attempting to sit independently.  One of the things we’ve found with him is that motivation is really important.  I can’t even begin to calculate exactly how much money I’ve spent on various toys in the hopes that somehow whatever new toy would be the answer, the toy that helped him “insert milestone here.”  For the most part it’s been a useless venture, but there have been some that stood out as successes.

When we were working on getting Elijah to sit we needed something that would hold his attention for a sustained period of time but that he needed to sit to play with.  Two toys that were tremendously helpful for us were the vtech learn and discover driver (  and the vtech sit to stand learning walker (  In general vtech toys have tended to be favorites of Elijah’s.  I’m not sure why but that brand has been a consistent winner for him.

Since we finally discovered exactly what the cause of Elijah’s delays is I’ve gotten better about searching for whatever new miracle toy is out there, and instead find myself searching for toys that are recommend by other parents of children with developmental delays and autism.  Not so much because I think they will work a miracle, but because I want Elijah to enjoy his childhood and with a limited budget I want to maximize the options he has available for play.  That searching (and the extremely limited resources I’ve found) is why I’m posting my own experiences.  I’ll post about these periodically, and I intend to divide them up by age and/or milestone so it’ll make it easier to find.  If anybody else has any experience with toys that worked really well for their children I would appreciate the input 🙂

Snapshot, May 2012, 29 months


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Here’s a quick snapshot of where Elijah stands today.  He is a very happy child who is extremely sociable with his caregivers.  He loves to give hugs and kisses to mommy and daddy and has recently begun waving “hi” and “bye” when prompted.  His vocabulary consists entirely of “da” “ma” and “ba” with a few other random sounds, however he has assigned various combinations of these sounds to multiple objects and people.  It’s a bit like learning to speak Chinese….the same word can mean twenty different things depending on intonation and context.  He also makes the sounds for cat, dog, pig, duck, horse and sheep.  He doesn’t say the sound words, i.e. “oink”, he actually makes a grunt sound that sounds just like a pig.  That’s about it for expressive vocabulary.  He does use the sign for “more” and will hold his hands up to you when he wants up, but no other alternative language as of yet.

Elijah’s receptive vocabulary, on the other hand, has skyrocketed in recent months.  He has several books and toys in which he can identify several animals, letters, numbers and colors.  You can ask him, “Elijah where’s the monkey” and he will point straight to it.  Pointing is another one of those milestones that lead to tremendous celebration in our household.  He only started pointing consistently back in March.  He still won’t point to things in the distance, but he’s mastered pointing at things in books and on toys.  I’m not sure if it’s a coincidence or not, but after reading “Nurtureshock” by Po Bronson (which is a WONDERFUL book, by the way) I tried one of the things he mentioned when he was talking about how children acquire language.  One one of the rare times Elijah would point at something I not only gave him the word for what he was pointing at, but also touched either his hand, his leg or his back.  Just a small little acknowledgement, but I noticed when I did it that he lit up and started pointing at new things and doing it more frequently.  The next thing I know not only is he pointing but he’s also making his own words for the objects in the picture as well.  Like I said, I’m not sure if it’s a coincidence or not, but I’ve definitely kept it up and it seems to make a difference for him.

Gross motor is Elijah’s strongest area.  His most recent evaluations from school tested him in the 15-16 month range in gross motor whereas everything else he’s at 12 months or less.  Honestly I’m not sure how accurate those tests are, there are a lot of skills they don’t cover and while the evaluations from school show very little progress he has moved in leaps and bounds since the beginning of the school year so I usually take those measurements with a grain of salt.  He is walking, running, and climbing stairs by sort of crawling up them.  I think he can do the stairs standing, but we encourage the creeping simply because our stairs are ceramic tile and the consequences of a fall give me nightmares to think about.  He can go down a couple of small stairs but still has a tendency not to look where he’s walking so going down stairs is not a skill he’s truly mastered yet.

In fine motor he’s mastered the pincer grasp and can feed himself snacks.  He’s doing better with feeding himself oatmeal in the morning with a spoon.  A bit messy, but what two year old isn’t?  Speaking of food, he’s still primarily eating purees although we just this month ago got him to eat chicken which has been a huge victory for us.  That’s our first non-snack solid so we were pretty happy about it.  We also got him to eat a few bites of scrambled eggs Sunday morning so we’re hoping a truly solid diet is on the horizon.  We’ve had to call everything “snack” to get him to try things, but I’m not going to quibble over vocabulary if it gets him eating 🙂

In social he is still completely ignoring his peers which is worrisome.  The other kids will say hi to him when I drop him off at school in the morning and bye when I pick him up and he completely ignores them.  We did see him play with one of our friends’ kid when Elijah was in his own environment so I’m wondering if sheer sensory overload isn’t part of the problem in getting him to connect with peers in a classroom setting.  With us he is, as I mentioned before, extremely loving.  He also shows some joint attention skills with us.  He recently started smiling at himself in the mirror as well.  He is extremely responsive to facial expressions and tends to respond more to the expression than to tone of voice.

Anyhow, I think that’s a fairly comprehensive picture of where he stands now, I look forward to seeing where we are in a few months.


A dedicated blog…


I’ve spoken a bit about some of our experiences since Elijah’s diagnosis on my personal blog, however I wanted to create a blog that was specific to Fragile X.  My hope is that our experiences can help other parents who come after us to navigate these sometimes scary waters.  We often still feel hopelessly adrift, but there are some things which we’ve found have been tremendously helpful with Elijah and maybe they will help other children with the same issues.

I intend to post about toys that are particular favorites, when Elijah hit certain milestones, and in some cases howe we finally helped him to them.  I also want to talk about challenges we are facing, discoveries that are occurring in the field and our own experiences dealing with the intricacies of insurance coverages and the school system.  I’m not sure that people outside the special needs community have any idea of the challenges faced by parents that have little to do with their child’s behavior and everything to do with the sheer overwhelming nature of what it takes to ensure your child receives the services they need.

I can’t promise that my blog entries will always be positive, I’m not sure when the grieving process gets easier, but I know that I’m definitely not there yet.  Overall I am very lucky because Elijah is a wonderfully happy and engaging little boy and most days it’s easy to find the silver linings, but it doesn’t change the fact that the sky is still mostly cloudy.  But then if I was incessantly cheerful there would probably be some mother reading who had to feel guilty when they had a bad day, so this blog is meant to serve as a “warts and all” account and I hope that it is useful somehow to someone, but even if it’s not, hey, it’s free therapy. 🙂