Jared

Jared was diagnosed with 49xxxxy when he was 2 yr 3 months old. We took him to a neurologist because he has hand tremors seen when using fine motor skills. The neurologist ran a lot of tests and diagnosed 49xxxxy. The same day that he was diagnosed I found this website. I cried (again) as I read all of the stories on this site, but everything finally made sense and the stories gave me hope. Jared was really doing well except for speech and I guess that’s why the pediatricians overlooked the diagnosis, even though there were other delays, they were minor.

Jared was born June 19, 2003 and weighed 5 lb 7 oz. He received oxygen right after birth for about 20 minutes. He had to stay in the hospital one extra day because of Jaundice that was caused by an AO antibody. His weight dropped to 4 lb 15 oz before we left the hospital. He was a sleepy baby and not interested in feeding. I did breastfeed him for 12 months, but it was difficult at first. If Jared had been my first child I probably would have given up on breastfeeding. I’m really glad now that I didn’t give up. Even though Jared started out in life not wanting to eat; he sure does enjoy food now. He started eating table food at about 5 months and he loved all of it. My mom said once, “I’ve never seen anyone appreciate food as much as Jared”. He used to get strangled on juice and water, but doesn’t anymore.

Jared has been hospitalized four times: three because of pneumonia at 2yr, 3yr and 4yr old; once with dehydration (from c-diff sickness). He has a mild hearing loss (20-25db), has allergies (dust-mite and dog dander), and asthma. Allergy and asthma diagnosed at 4 yr old. He gets lots of ear infections and got ear tubes just before turning 4, but these have not helped much and now they are coming out as expected after being in for one year.

Jared did receive four testosterone injections at age 2 and probably one after he turned 3. His body put on weight all over and his balance improved; good results. His behavior was temporarily worse.

- Walked independently at 21 months (did walk months sooner but wanted to hold on to something - very cautious)

Jared wants to play games just like other kids his age. He likes to play red light stop/green light go and hide-and-seek. He requests both of these verbally by saying ‘red stop green go’, and ‘Momma one two three’. This comes out more like ‘re op reen bo’ and ‘Momma one oo ee’.

Jared likes watching Signing Times DVD’s and will now sign along with them. He also likes Love and Learning DVD (helps teach reading). Jared currently knows over 50 signs. Most of what he says now he used to only sign. It’s almost as though when he learns the sign the word is not far behind.

He has at least 100 words now, maybe more. He is putting words together, such as, ‘purple drink’, ‘Lucy brown dog run’, ‘Papa big truck vrrmm’, ‘Papaw big four-wheeler’, ‘RyeRye hug’, ‘Momma read’, ‘Papa big green ball up up high’, and some more. Of course, strangers would not be able to understand most of what he says, but the people around him a lot do. Sometimes I don’t understand him and this saddens me and then motivates me to sign and practice speech with him even more. He has most vowel sounds and r, p, b, m, l, and we are working on t and d, but not there yet.

He can now stand on one foot and attempts to jump on one foot (mimicking older brother). He walks up/down steps by himself and will get mad at you if you try to help. He climbs, runs (not real fast, but getting there), and jumps almost as well as other kids his age. He loves to drive his power wheels four-wheeler and jeep and drives very good.

Jared has a temper when he does not get his way and will throw objects, pinch, or hit. However, I’ve noticed that when I stay calm handling it then he does a lot better. Also, outbursts are worse on days that he gets too much sugar or when he gets tired or is sick. He has had very few incidents of bad behavior at preschool. Recently he hit a boy, but the teacher said that he was taking up for a girl because the boy hit her first. I see this at home too. If Jared’s brother ever shows anger toward me then Jared will start hitting at him. He also takes up for his brother by hitting us. He does have his sweet moments too and likes to give hugs and slobbery kisses.

Jared has had tubes in his ears now for about 8 months. The only benefits seem to be that I can visually tell when he has an infection and he gets antibiotic ear drops instead of oral antibiotics. He is still having a lot of ear infections throughout this winter. Jared also has a mild bilateral hearing loss (~25 db), and has had hearing aids since he was 3. Although he does not want to wear the hearing aids.

Jared has been seeing a pulmonologist who thinks he may have asthma. We are not sure at this point; however, he is on an asthma maintenance medicine along with an antihistamine for allergies. He is still getting colds. I think he catches everything because he bites his fingernails all the time and attends a preschool.

We moved him to a new private preschool about five months ago so that he can get applied behavioral analysis (ABA) therapy there. This has been great for his social skills and language. His teachers at the public school say his social skills around the other children have improved greatly. His behavior at home still needs to improve as he hits and pinches when he gets mad.

Jared’s language is improving all the time, but use of phonemes is improving at a much slower rate. We are still working on /t/ and /d/ sounds. Some things he is saying recently: when asked where socks are he said, “way back hall” (has all the sounds but /k/). When his older brother called him a silly name, Jared replied back with “poopoo head”. When asked what he did at school, he might say “outside uhuh rain” (uhuh for no) or “outside play”. His favorite phrase right now is “no way”. He likes to sing “ABC RyeRye Papa Momma Nana Yeah”. He always starts with ABC and then says names and always ends with Yeah. He actually carries a little tune. He also practices speech by himself and then will tell me it’s my turn. He loves I Spy book and will say “I py that” and sometimes he says “I py red ball… right here” and point to it. It’s so funny when he does this. He is loud and talks a lot since we took his pacifier away about two months ago.

We are working on getting him to dress himself, which he can do, but he still asks for help. He is not potty trained yet, but can tell us when he is wet and does go to the potty by himself sometimes (nothing happens when he gets there). I feel that this will come along soon and don’t want to force the issue. He has always been a good eater and we’ve never had any issues with feeding (except if he gets mad he might throw the plate of food or his drink). He is able to jump now and get both feet off the floor at the same time. He rides a push scooter through the house like a mad man. He can ride a tricycle and a bike with training wheels. He loves to jump on a blow-up bouncer and asks to do this often. He can snap his fingers. He can count to 10, skipping only seven. He knows and can say most colors, even gray. We do still use sign language and it is wonderful. He sometimes creates his own sign and he does a great job at this.

Jared is in Kindergarten now, recently potty trained, and doing very good. He attends a local public school and is in a regular education classroom with about sixteen other children. He is able to do some of the class work independently. He has already learned about ten sight words. An aide is in the classroom to assist him and two other children and they say that he doesn’t require that much of her time. His interest in writing, drawing, and reading has increased since being in school. He recently read a four page “I am” book and we could tell he was very proud of himself. He gets pulled out of regular class for speech therapy (30 min 2x group, 30 min 2x individual), occupational therapy (30 min 1x group), and special ed (30 min 4x group) a week. Also pulled out for Title 1 reading for 30 min 5x group a week. A physical therapist assistant works with him some days during PE time. He seems to really like his teachers and so do we. They both talk about how smart he is and the special ed teacher talks about him helping the other two children in her group. At lunchtime he does not want to carry his tray and has dumped it and his drink onto the floor. We sent straws for him to use with his drink at lunch, which helped, and the aide will just carry his tray until he is ready to do that himself. Some of the teachers and therapists are starting to inform us that some days he doesn’t want to do his work and he is sometimes difficult to motivate. I think some of it is because he doesn’t feel good. He recently had strep throat and now a week after finishing antibiotics from that, now he has an ear infection.

At home he still has explosive outbursts where he will hit, kick, or throw, but we are seeing fewer of these. We continue to work on speech, language, behavior, and tons of other things at home. He is talking more than ever now. Some of his new words are “mad”, “bad”, “mean”, “with”, and “that”. He also has started using our last name… sometimes saying Momma Smallwood, Papa Smallwood, or RyeRye Smallwood. He thinks everyone’s last name is Smallwood, even his friend at school. We still use sign language, but he is saying a lot of sentences now. I love when he says “I want hashbrown in my bread” when we go to Chick-fil-A in the mornings. Other phrases he says are “Papa ride me lawnmower”, “I want two green bubble gum”, “I want white tum, whole one”, “I want play at park now” (he can really emphasize now), “Momma no with me”. Sometimes he will say “five minute” or “one minute” when I tell him no about going outside or something. He has an approximation of /t/ sound now, but doesn’t have /k/ or /g/. He has /d/ sound, but only when he pretends to crank a lawnmower by saying “dududu…” and recently got /ch/ sound. He was in a summer camp this year that was given by ABA behavioral therapists with a ratio of 2:1. They worked on sensory, social, language, handwriting and lots of other things. I believe all the ABA therapy helped him with language, social skills, and attention span. Since he started school we’ve had to drop private speech therapy because it is an hour drive and he is exhausted after school. However, I am very excited because we are about to pick up both a new private speech and occupational therapist that are located in our home town.

Jared loves the outdoors and this year he is doing new things… swinging independently, riding his bike (training wheels) around the block. I have to jog, and sometimes run, to keep up with him when we go around our neighborhood block. He is hitting a ball off of a tee very good. He can drop a small football and kick it. He can dribble a basketball while standing still. We went to the beach over the summer and he and his grandma (Nana) accidently fell into the water while we were walking along the beach. We were letting the waves come up over our feet, but they got off balance. He still talks about that and will say “Nana fall down me at beach” and then laughs.

There is never a dull moment at our house, except when Jared is asleep. He does sleep good through the night, always has. He has changed me forever and I am grateful for him teaching me to look at life from a different angle. My name is Charlotte and my husband’s name is Stacey and we would love to talk to anyone at anytime. You may email us at c7smallwood@yahoo.com if you ever want to chat. We would be happy to share information that we have learned from 49xxxxy and apraxia conferences that we have attended in the past.