Routine and Sotos Kids

[HikingStick]

I'm just wondering how routine-oriented other Sotos kids are. Our
son, Gideon, has some behaviors that are predictable patterns for
him. A lot of our kids have done the things he's done, but for him
these are things he does every day. If he doesn't do them, chances
are that something is wrong (i.e., that he is sick).

For example, each morning he makes his way into our room, climbs up
into our bed, and plants himself between us. I know this is a common
behavior, but the way he does it is the same every time, from how he
approaches the bed, to how he positions himself on a pillow (usually
mine), to how he wants the covers pulled up in a certain way. Then,
after lying there a while, he will start pointing at features of the
room (and recently, his body), saying "dat" (that). I tell him what
it is (e.g., window, blanket, ceiling fan), and he points to something
else. He seems to point to the same items first each day (window,
then covers, then ceiling fan), but will then add some things.

That's just one example. I know there are others.

What have your experiences been?

[Jenny Moretter]

My daughter demonstrates the same behaviors. On a daily basis, every morning she gets up and will always grab the same shirt to wear every day over her normal clothes. She will only eat the same types of foods and when we offer new foods she rejects them. She will watch the same show (I mean same episode) over and over and gets very upset if we turn the channel or try to have her watch something different. Another thing we have noticed is that she will ask me everyday "Are you my mommy?", or she will be "I am sad" then minutes later will be like "NO, I am happy." These are very common characteristics of children with Soto's. They have to have routine activities or follow a very strict pattern otherwise they feel out of their comfort zone.

Try this; watch sometime if you take your child with you to the store, can they identify certain aspects to the store like, name, items, etc. Mackenzie always knows we are going to Target not by me telling her but by her sense of direction. Once we get into the store she will always identify the same things but avoid others. It is rather interesting to watch them do this.

Does Gideon ever demonstrate physical behaviors like slapping his face or hitting his head on the floor or wall? Mackenzie will do this almost daily when she gets upset or we tell her no. It is almost like they feel rejected or can not fully express in words their feelings so they use physical expression.

Lastly, potty training is very hard at this stage. We have tried potty training but she will not cooperate at all. Mackenzie just turned 4 and from what I have read and researched that in some children they are not fully trained even at the age of 8. She does have extreme difficulty producing stool so we have had to in the past use Enimas or suppositories. We have now tried putting a little bit of Miralax of Benefiber in her juice or food and it seems to help a little. I think she is really afraid of going. Any suggestions?

[HikingStick]

At this point, only two, Gideon has extremely limited speech. He has
"No!", "dis" (this), "dat", "Mom", "Dad" (oddly, only when very angry
or upset), "Moe" ("more", I think), and "may-may" (used a lot, but
can't figure out a meaning). I'll watch him when we have him out.
Because we have older kids, we often leave him at home with one of
them rather than take him ot the store.

He does tend to hit, and has banged his head a few times, but as often
as some. Since he found "No!", he uses that a lot. Teaching him some
sign has helped, and we've also noticed that he understands far more
of what we tell him than he is able to communicate to us. So,
sometimes, we are able to talk through a series of things until
something registers with him. Maybe he'll sign "yes", say "no", or
sign "please" when we hit the right topic. I remember the first time
I saw him respond that way. He was very cranky, and I started asking
him about different things. When I asked if he was thirsty, his eyes
lit up and he signed "more" and "please". That was a breakthrough
day.

Some of the traits you describe with your daughter are reported as
common among children with autism. I know that many Sotos families
report dealing with autism, too.

We've already had to start using Miralax (or something simliar),
because Gideon really could not pass stool at all. Sometimes he would
while sleeping, and sometimes immediately after a bath (more relaxed,
perhaps, or perhaps more constricting muscles if he felt cold?), but
mostly he would had a disdended abdomen and would pass only little
pieces (often just the size of gumballs). On the fiber/laxative
supplement, he is a bit more regular, so our doctor has us giving that
to him every day. From our early study, we figure he may not fully
potty train until well into his grade school years. The lack of
muscle tone and control makes that very difficult for some (many?)
Sotos kids. I doubt it is that she is afraid of going. I'm guessing
she probably just can't, and that's got to be as frustrating as not
being able to talk.

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[Jenny Moretter]

Another option you could try is to check with your county and see what they can offer you for services. When Mackenzie was 2 we were able to have an occupational and physical therapist come to our home weekly and work with her for FREE. It was very nice and allowed us to use some helpful tools with her speech. She too has learned sign language and did very well. She actually can speak relatively well so that we can understand her but for others they still struggle.

I have often wondered if she does not have a mild form of Autism but according to the Genetist we took her to they claim no. We are currently looking into taking her to a behavioral specialist to help her with communication and anger. Our biggest fear is that we have advised in the past that she may need to be on medication to help control her outbursts but I truly do not want to do this if I do not have too.

[HikingStick]

We've had our son working with various therapists since he was less
than a year old. In the beginning, they were working on a plan based
on his initial diagnoses of Cerebral Palsy and Kleppel Trenaunay
Syndrome. As we've learned more and got the Sotos diagnosis, we've
modified his plans accordingly.

I recommend you seek out a developmental specialist or psychologist
who specializes in autism (a regional children's hospital should be
able to refer you to someone). While I'm not a medical professional,
I'm not aware of autism being considered a genetic condition (though
genetics could surely play a role in a disposition toward it). That's
why I recommmend checking in with a specialist in the field (no
offense to your geneticist). Autism is considered a developmental
disorder and is most often diagnosed based on observed and
demonstrated behaviors. We just had another child go through some
testing (he had sensory integration disorder when he was young and has
displayed some characteristics that made us wonder about autism), so
we've just been through the process. While I can't say that they will
be able to confirm your daughter's behavior as autism, they stand a
good chance of being able to tell you if her behavior *isn't* related
to it.

I feel for you and the decision whether or not to medicate. The way
we're approaching our child is to remember that in addition to being
an overgrowth syndrome (making everyone think he is older), Sotos is
characterized by marked developmental delays (making his behavior at a
much younger age level). When he starts acting up, we remember that
even though his body already looks like that of a five year old, his
ability to speak and communicate is really somewhere just beyond the
one year mark. Everyone know that kids go through what are called
"the terrible twos", but we're expecting to deal with that type of
behavior through the threes, fours, fives...perhaps even until we're
at the eights. So long as our son is only delayed and not actually
retarded, he will eventually grow out of that behavior. Only God
knows what will be, but if his development eventually stalls out
somewhere along the way, we'll try to remember what his mental age is
and treat him accordingly. It's not as if our son has all the
capabilities of his peers and is just misbehaving, so I'm reluctant to
medicate him at this time. Getting that second opinion on autism
might be a good next step. If that condition is at play, that
specialist might have something to say about ways to manage the fits
and behavior issues.

May God give you strength.

HikingStick

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