I highly recommend writing one, or at the very least, printing this and taking it after adding some information. This means the staff will have a good basic background on your child, as they are generally very unlikely to all have cared for a baby with Down syndrome previously.
I also recommend attending one of their staff meetings, and telling an excerpt of your birth story, diagnosis, or putting together a few fun facts about your babe. Almost all daycares would love you to do this, as they love to educate their staff regularly where they can.
Dear Early Childhood Teachers,
I wanted to take a moment to introduce you to my son Parker who you may look after at some point while you work in this centre.
I want to let you know that I welcome any and all questions you may have, and only ask in return you read this as carefully as I prepared it.
Parker has Down syndrome, which mean he has an additional copy of his 21st chromosome. This is naturally occurring, and happens in around 1 in every 660 live births. There is no demographic for this as it is 100% random and occurs when the cells divide again and again (called meiosis) and one splits, and occurs evenly across all nationalities and cultures. I found out he has Down syndrome about an hour after he was born, and we were hospitalised for 7 weeks before he came home on oxygen. He has only just been taken off 24/7 oxygen therapy. (You can bet I’m happy about that!) A syndrome is actually just a word that means ‘collection of symptoms’... The accurate medical word for this extra 21st chromosome presenting is Trisomy 21, and this is the term which is used in hospitals.
Parker has certain characteristics that are common to other babies with Down syndrome. If you look at his little palms, he has a singular line across, rather than a ‘head and heart line’. I like to think this is because he’s all heart! He also has a perfect little pair of slightly lower set ears, and other slight physical characteristics you will notice if you know him long enough.
Down syndrome has been called many things over the years. The word ‘Mongoloid’ was used originally as it was believed children bore a resemblance to people from Mongolia. Let’s just say Mongolians weren’t very happy about being stereotyped. And neither were the kids and adults with Down syndrome! Another term that has gone WELL out of use is ‘retarded’ (this has evolved colloquially to become an insult, despite its medical roots in a hospital setting). It is true, of course, that people born with Down syndrome will have a lower IQ than a typical person without the ‘little something extra’. People with Down syndrome may have learning delays dependent on their level of intellectual impairment and also their medical conditions, if any, but with early intervention, support and the correct teaching style, they’ll generally accomplish anything they want to. Loads of older kids and adults with Down syndrome have licenses and cars, go to college, hold down jobs (not just in grocery stores, but in industries that interest them) live independently and get married, and travel extensively. Some medical issues present more frequently (but NOT always) in kids with Down syndrome... which can sometimes be frustrating for parents like me! Parker is often stereotyped by a stranger as being similar to another ‘person with Down syndrome’ they may happen to know, which is almost never the case! For example, Parker’s not happy all the time, believe me! I don’t know any kids with Down syndrome who are. He is also a chubby, well sized kid, unlike many babies with Down syndrome, who are medically known to frequently present at a smaller size and are often diagnosed with ‘failure to thrive’. Again, there is always a medical reason for these ‘symptoms’- often thyroid or heart or initial newborn feeding issues.
Gone are the days when every symptom that presents, is just blamed on the ‘Down syndrome’! Can you imagine a doctor saying,
‘Well, you have a bone sticking out. That’s common in people with a broken arm,' sending you home without fixing it? Well unfortunately, when symptoms are put down to the ‘syndrome’, instead of being investigated, that’s exactly what happens, and happened often in the past.
If you haven’t heard of ‘Hypotonia’, let me fill you in. It means Parker has low muscle tone. Basically, his joints and muscles are very very lax when at rest. The act of ‘still’ to ‘active’ takes more effort for Parker than it does for a typical child, although his physical strength is a different attribute all together. He is also prone to twisting his legs in funny hyperextended ways while he learns to crawl and rotate- it is very important this is never allowed to happen for a period of time! He is just as prone to hurting himself as other children.
I make sure I check his leg position whenever I walk past him, and adjust his knees back together if he has turned to the side and a leg has gone askew. Hypotonia also means Parker gives AMAZING melty koala cuddles. He is a very attached child (I practice natural and responsive attachment parenting for the most part) and you can fix almost anything with a cuddle and a lot of face kisses. If he gets upset, please pick him up as soon as practical, but put him back down as soon as he settles.
Children with Down syndrome have very long memories and can develop little ‘grooves’ or habits quite quickly. If you notice him doing anything ‘new’ or even new to you, or unusual, please mention it to me when you pick him up so that I can let you know if it is his typical behaviour. I am ALWAYS happy to take the time! Another important point- Children with Down syndrome have a very hard time in ‘skills transferring’. For example, he may begin to pull up to stand on a couch- he may not be able to pull up on any other surface for months, apart from that couch. At home, he has just started pulling himself up to stand on the outside of a particular plastic box during therapy, but wouldn’t have a clue how to do it on any other surface!
SLEEPS AND FOOD
I do not let him cry himself to sleep however he does sing a little sometimes before he goes down. Because of his floppy airways (tracheomalacia and laryngomalacia) by the time he is actively noisily crying (a ‘typical cry’) he is generally quite distressed. You will notice even his loudest cry is a lot quieter than other babies and this is due to his airways. It is also the reason he does not cry often. Once down, he is basically dead to the world and will often sleep for a 2-3 hour stretch. He likes being on his tummy with his head to the side, or on his side sometimes (He is never put to sleep on his back due to his floppy airways and apnoea.) He has two naps a day currently. He will show classic tired signs.. watery shiny eyes will come well before he starts yawning. He will also rapidly start losing tone from his body as he gets more tired, and his head will ‘jerk’ as he catches it relaxing. That is a very good time to initiate a nap!
He is unlikely to babble at daycare for quite some time as there is so much going on around him. He babbles well at home, but imagine his therapies and sensory interactions every day like ‘a cup’. You have to fill that cup right up to the top with input, before you start receiving any output. Please do not let his lack of responses put you off what you are working with him on- if he is watching intently, he is enjoying the activity very much. You will always get beautiful cracking smile that starts with his eyes, if you spend the time talking and interacting with him face to face. He will need more ‘guiding’ than other babies, but please remove physical support quite quickly as soon as he has caught on to each activity.
Before you feed him each meal or snack, you can ‘wake up his mouth’ by giving him a Nuk toothbrush or handing him a cold carrot from the fridge. You can basically give him anything you like that he can chew on while you prepare his meal. A toy will do! If I find he’s not paying attention to his meal, I wipe a wet washer over his cheeks and rub it on his lower face like I’m cleaning it. This wakes up the nerve endings and prepares him to chew correctly and swallow his food. Parker is breastfed which means he has an advantage already, and has fairly good control over his mouth muscles... however he still has low muscle tone in his mouth and you will see the difference when you are spoon feeding him/he self feeds. The prepatory activities really are important for him. He will eat anything age appropriate as long as it is cut into very small pieces- I never let him eat unattended due to the low tone in his trachea, and I check his mouth after his meal to make sure he hasn’t squirreled away food in his palate, which is slightly higher than a typical babies’!
You can give him a spoon while you spoon feed him as he has been doing some great things in speech therapy with guiding and placing it in his mouth and sucking- otherwise you will have a mess on your hands as he will scoop food out of his mouth with his fingers!
Physical Therapy- skills
You will notice Parker is keeping up quite nicely in some areas, but as he grows older the gaps are growing evident.
My physio tells a story about a theme park.. ‘Imagine you went to a theme park for 6 hours, and went on all the rides, and stood in all the queues and did all the walking. Then when you got home, a mean therapist came over and asked you to sit in an upright position, or tried to get you to lean to the sides and grab for toys’. That is actually what it feels like, every day, for a baby with low muscle tone- without the fun of having been on all the rides!
He cannot be left to sit unsupported, as this will tire him out for the rest of the day if he were to be left too long… He would slump forward with his forehead on the ground, unable to hold himself up. You are welcome to place him in a sitting position for up to 5 minute stretches while you monitor- if he starts jerking around or slumping, (or lunging for you with his arms!) he is unable to hold himself up and needs to go back onto his tummy. I try not to push him towards milestones such as extended sitting, as he is simply not ready- he will be ready when he has the ability to pull himself into a sitting position. At the moment he is starting to pull off the ground on all fours and rock.
Parker is not ‘Down syndrome’, and he is not ‘A Down syndrome’. Parker is Parker. A little brother, a son, and now a daycare kid. He is a child who HAS Down syndrome. People first language is extremely important to me and I am sure it will become important to you, too, as you get to know him better and fall in love with him as I have.
Parker has a Facebook page which you are welcome to ‘fan’. It is called, ‘Parker’s Place’.
You can find it here; www.facebook.com/parkersplaceaustralia
Last, and by no means least- I have a playgroup at my home often, for children and babies with Down syndrome, Fridays at 10am. I live 5 minutes from the centre. You are more than welcome to attend this playgroup if you would like to meet other babies with Down syndrome, chat to the parents and observe their baby’s interactions with their parents as well as physical skills and interventions used. I am also happy to assist you to attend group courses in Key Sign for infants (which I am teaching Parker) and will have different therapists attend your room during the day to assist you with learning more about children with special needs and what Parker’s specific capabilities are.
It has been a huge decision made, for me to place Parker in care at such a young age-which you would be aware is quite rare with a child with Down syndrome, as the youngest child I am personally aware of was almost 2! He has been at home with a nanny since he was 3 months old, however I believe he is ready for more stimulation and engagement during the day. I believe there are huge benefits to placing my son in such a sensory-play filled, alert and active environment, filled with rich experiences, sounds and new friends and carers. I will never exclude him from an experience based on his disability unless medically required, and I am so appreciative already of the lengths you have gone to, to help with his transition from home care to your centre.
I place my trust in you as professionals to assist him to fit into your own routines and structure as gently and supportively as you can. I’m well aware the world doesn’t revolve around him, and I am confident he will learn to fit in nicely and find his groove. I don’t expect you to move mountains every day for him, I only ask he never be left to cry. He is such an easygoing little boy, this has a huge effect on him for at least the rest of the day and I would rather you call me at work and come and pick him up if he is just having an awful rubbish day and can’t be soothed. There is always a reason... he could be extra tired from so much morning play with his low tone, or have had so many apnea episodes the night before he is sleep deprived and just ‘over it’. My job will never be as important as my child.
Thankyou for caring for Parker. I hope he can teach you a thing or you, in his own quiet, patient, persistent, steady way- like he has already spent 10 months teaching me.
Parker’s mummy, Kat