FYI: what we see with our kids

For those of you who are walking a path similar to ours (and there are many of you out there), you might find this information interesting. Some of it is already known but our group proves it. Your kids will be individuals, but here is what we've found with our four:

1. Joel walked at 2 yrs. 5 mos.
2. Timmy walked at 3 yrs. 4 mos.
3. Ella walked at 2 yrs.
4. Lucy walked at 1 yr. 6 mos.

Averaged out in my own little group= A child with Down syndrome may be walking at 2 yrs. 4 mos.
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1. Joel has a single palmar crease in both palms.
2. Timmy has a single palmar crease in both palms.
3. Ella has no single palmar crease in either of her palms; both are double.
4. Lucy has a single palmar crease in one palm and a double in the other.

Averaged out in my group= 62.5% of the palms have a single crease. 37.5% do not.
Or, 5 out of 8 children with Down syndrome will have the single crease in at least 1 hand.
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1. Joel has short arms & legs and in comparison, a long torso. At 9 yrs he is the height of a 5-yr-old.
2. Timmy's arms don't seem especially short but his pants are always a size smaller than his shirt, for length. Long torso. At nearly 7 yrs he is the height of a 3.5-yr-old.
3. Ella has short arms & legs, long torso. At 4.5 yrs she is the height of a 3-yr-old.
4. Lucy has short arms & legs, long torso. At 1.5 yrs she is the height of a 12 month old.

Average seen in my group= At least 75% of children with Down syndrome will have short arms and legs with a long torso. Pants must always be hemmed, shorts and short-sleeved shirts work better. Their growth rate (once they are stable) may start out similar to their typically developing age-mates, but will slow down as time goes by. Of course heredity still plays a role (Timmy is Asian), but they will be short as adults.
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1. Joel was born with an AV Canal and a malformed mitral valve. He has required two heart surgeries; one at 10 lbs to place a fabric divider to make two chambers in his heart and to jerry-rig the mitral valve; and the replacement of his mitral valve with an artificial one when he was 30 lbs (4 yrs old). He will require more replacements as he grows and Coumadin therapy for life. He is now 9 yrs and 80 lbs.
2. Timmy was born with an AV Canal heart defect and Tetrology of Fallot. Both were corrected when he was an infant and nearly 10 lbs.
3. Ella was born with PDA and another small hole in her heart. It resolved on its own and no surgery was required.
4. Lucy was also born with similar heart defects as her sister and they resolved within her first year of life.

Average seen in my group: Children with Down syndrome are frequently born with heart defects and at least half of them will require surgery to maintain life. The severity will vary. Each child's sweet life is worth saving! Words cannot express how valuable these little souls are!
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1. Joel had mild reflux and had to have his liquids thickened as a baby/young child. It took an hour to feed him a bottle.
2. Timmy had severe reflux along with other medical issues as an infant and had an NG tube at first and then had to have a g-tube placed for feedings at 7 months. He still receives most of his nutrition this way.
3. Ella required thickened liquids as an infant and was a very messy drinker, losing much out of her mouth because of poor muscle tone in her lips. She drinks safest from a straw.
4. Lucy is an "aspiration risk" baby and must have her liquids thickened. She also has reflux and frequently spits up. She loses much from her mouth at bottle time due to poor lip tone.

Average seen in my group= Reflux is a problem for at least 75% of these kids in varying degrees. Formula must be thickened for each of these babies. Jaw support should be used at bottle feedings. One in four may require g-tube feeding at some point in their infancy/early childhood. Other gastrointestinal problems may also be present.
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1. Joel has Hypothyroidism and requires thyroid hormone daily to grow, stay regular, etc.
2. Timmy doesn't have thyroid issues at this time.
3. Ella doesn't have a thyroid issues at this time but is anemic.
4. Lucy doesn't have thyroid issues at this time.

Average in my group: Half of the kids with Down syndrome will have endocrine issues of some type, usually manageable but sometimes serious.
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1. Joel's left eye wanders outwards intermittently; it's called "exotropia". He's had eye surgery once. He doesn't need glasses at this time.
2. Timmy has "Nystagmus" (involuntary movement of eyes), severe myopia/ nearsightedness of -15 and amblyopia (eye wanders inward)/esotropia. He wears very thick glasses, best at school.
3. Ella had crossed eyes and had surgery in both. She has astigmatism but won't wear glasses at school or home. Her eyes are getting lazy again and cross intermittently.
4. Lucy has had two eye exams but the ophthalmologist sees no problems yet.

Average in our group: Three out of four have eye muscle problems which developed over time. Timmy had nystagmus at birth. Half of the kids wear glasses, probably more will as time goes by.
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1. Joel has had ear tubes several times and was supposed to have his tonsils and adenoids removed, but problems related to blood thinner and illnesses prevented it. Joel also has asthma.
2. Timmy has had ear tubes several times and had his tonsils removed (couldn't remove adenoids due to internal anomoly).
3. Ella has had ear tubes several times, and had her tonsils and adenoids removed. Ear infections have affected her hearing.
4. Lucy hasn't had these surgeries yet. She has had several sinus infections over the year and aspiration pneumonia as an infant.

Average in our group: Kids with Down syndrome have multiple upper respiratory infections and floppy airways (trouble breathing while asleep, snoring) and will require ear tubes and their tonsils and adenoids removed (if possible).
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1. Joel knew over 100 ASL signs before he was 2 yrs. Lost most of them when he began to talk. Now talks in quotes and interestingly arranged sentences, often to himself. For instance, "Joel, is it you? Yeah, it's me."
2. Timmy has a few words; he learned to say "Papa" after he turned 6. He knows "No!" has probably 8 other words plus some names, He signs "more", "please", points and yesterday I saw him sign "no".
3. Ella has two words: "No" and "doh!" She signs "more".
4. Lucy says "mama" "papa" "uh-oh", "up", and signs "father" and "more". She tries to sing and do motions to little songs.

Average in our group: Half of the kids with DS will speak in sentences by the time they are in second or third grade or sooner. The other half will take longer or may not ever speak well. Signing and the picture exchange system can help. Speech therapy helps. When they do talk you will be ecstatically happy!!!
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1. Joel has been identified as being on the autism spectrum. He has obsessive-compusive behaviors and perseverates on certain subjects or objects of interest. Routine and the familiar is very important, transitions are difficult. Social skills are not what they should be and must be rehearsed and rehearsed. He has some sensory issues. He also has some sevant qualities and can use movie quotes brilliantly. What a kid!
2. Timmy doesn't seem to be on the spectrum and is more open and affectionate. However he still has oral defensiveness and can be very stubborn; communication is a problem for him. People love Timmy!
3. Ella has traits of autism and perseverates in playing with her scarf and flapping; in her own world and not responding to her name. Yet she is affectionate with us in her own way and smiles and laughs at the TV. She engages with other children only in routine things such as songs she knows and ring-around-the rosy that she's familiar with. Routine is everything. She will eat almost any food or non-food. She is our adorable mystery child.
4. Lucy shows no signs of autism or sensory sensitivity at this time. She is affectionate and loves one-on-one attention. What a character! She keeps us on our toes!

Average for OUR group=
Two out of four may have Autism Spectrum Disorder.
Average now seen in the General population: 1 child in 110 has autism.
Average in Children with Down syndrome: 1 child in 10 has autism.

How they term this dual diagnosis= "DS-ASD".
When did we realize it might be the case in our kids? At around 4+ years of age; a little later than it is usually discovered in children in the general population.
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Average for our group= Nothing is average, everything is 100% amazing! So interesting, so challenging! So different, so tiring, so worth it, so rewarding. Wow.
You can say that again. wow.