Down Syndrome Foundation of Southeast New Mexico
Down Syndrome Resources
Providing support and assistance to all people with Down Syndrome and their families. Impacting and changing our community one life at a time.
The Down Syndrome Foundation of SENM wants to help you with as many resources for the different stages of life. Let us know if you know of any other great resources we can add to our list to help others.
We are so happy to serve you and your family as much as possible!
Resources
Whether you are looking forward to your child's birthday or preparing for the birth, we congratulate you. We understand this journey is not without its unique challenges and new experiences. Rest assured, though, you are not the only member of the community struggling. Rather, you're a part of a large, warmly caring, and supportive community.
Navigating through the beginning stages of education can be difficult. We hope to provide you with good information to help you along the way.
There are particular educational needs for a child with down syndrome. Many schools are making efforts to enhance the educational strategy they use to support these students.
Helping your child succeed in school is essential. You should know your school system's policies and procedures for students who are on an Individualized Education Program (IEP).
This is a whole new world for parents and children alike. Many challenges are encountered during this phase of life. Much like their peers, tweens and teens with down syndrome will need guidance and patience as they transition from childhood to adulthood.
As your youth transitions into adulthood you will need to help them develop independence.
As we begin to age there are many issues that we have to deal with that we didn't before. This is particularly true for individuals with down syndrome.
Advocacy can be a powerful strategy to influence change by letting your voice be heard. We encourage as many people as possible with a connection to Down syndrome to become an advocate.
Prenatal & Newborn Info
The National Down Syndrome Congress, Global Down Syndrome Foundation, and National Down Syndrome Society have joined forces for the second edition of the groundbreaking Prenatal & Newborn Information Pamphlets, available in English and Spanish.
Feeding Your Baby
Children with Down syndrome are believed to have a higher risk of infection. The child’s mother passes antibodies during breast-feeding, which then protects the infant and prevents disease. There are lots of benefits to breastfeeding, but not all babies will breastfeed.
According to the Canadian Down Syndrome Society, infants with Down syndrome may possess a small tongue that may push against your nipple. This may make it difficult for them to latch on correctly, they may actually push the nipple out of the mouth. A proper latch will show your baby’s tongue cupped underneath your breast.
Your baby may react differently to bottle feeding than nursing. You may need to try different bottle nipple types, including the kind that slow the flow of liquids, before finding the perfect one for your infant.
Here are some great resources for feeding your baby.
Welcoming Your Baby
Family members experience a range of emotions in the early stages of understanding a diagnosis, which is very normal! You are in a safe place. We want to provide you with the good information about Down syndrome to help you better understand everything that has been shared with you and your relatives.
Below are some good informational resources.
General Educational Resources
Early intervention describes a variety of specialized services and resources that professionals provide to young children with Down syndrome and their families. These professionals may include special educators, speech therapists, occupational therapists, physical therapists, and social workers.
This is also a time of transition into formal schooling. The 3rd birthday is a time when transition meetings will be held by your school system to ensure that the early intervention services your child is receiving are seamless.
Potty Training Resources
Just like other children, potty training your child can happen at different times. You know your child better than anyone else, so do what works best for your child. Like their peers, children with Down syndrome possess a wide variety of skills. They’ll accomplish developmental milestones at their own pace and time. And your child needs to be ready just like any other child.
Health
In individuals with Down syndrome, metabolism can be 10–15% slower compared to peers of the same age, weight, height, and gender. Be aware of their diets.
They may also experience these other issues:
- Mineral Deficiency or Excess (i.e., calcium, iron)
- Macronutrient Deficiency (i.e., fiber, water)
- Excess (or Inadequate) Energy Intake for current activity/stress level
- Co-occurring Gastrointestinal or Autoimmune Conditions
- Feeding Difficulties
If your child is experiencing any of these you should consult a professional dietitian.
Education Resources
Below are some great resources to help you navigate through the education of your child during the elementary years. From studies, to websites, to blogs, to learning sites, to webinars, there are tons of great resources here!
Health
Enriching your child’s school experience with sporting activities and getting involved in extracurricular activities can be very beneficial. Finding a Special Olympics group in your area is a great way to start. Other activities offered by your school or community are great ways to get your child out and active.
Keratoconus
Individuals with Down’s syndrome are very likely to suffer from eye issues.
Keratoconus, known as KC, is an eye condition in which the corneal tissue weakens and thins over time, creating a cone-like bulge and optical impairment in the eye.
Keratoconus can lead to considerable visual loss and may necessitate a corneal transplant in severe cases. Although rare in the general population, KC affects between 5 and 15% of individuals with down syndrome. Get more information from the links below.
Puberty & Safety
Puberty occurs around the same time for teens who have Down syndrome as for other teens. Your teenager will experience many of the same sexual feelings emotional swings, crushes, depression, and tiredness as others do at this time.
Teens with disabilities have the same social desires as other kids. Most will probably want to date, make friends, and cultivate strong relationships. You can prepare your son or daughter for similar pursuits. Developing your child’s social skills and and behavior will go a long way in helping them to adjust.
Safe Social Media Practices
Teenagers and tweens with down syndrome use the internet and social media sites just like any of their peers. There are lots of positive benefits to using the internet, however, it is important to teach your teen to be careful while surfing online. As a parent, you should assist your teen with safe practices and etiquette while using social media.
- Set up Parental controls – Using this function, you’ll be able to see what your teen is seeing online and what websites they are visiting.
- Review their browsing history regularly
- Disable tagging locations – If you don’t want your teen’s current location to be visible to strangers, this is critical.
- Teach your teen that what gets shared on the internet is NOT private.
- Review things that should not be shared – personal details, passwords, credit card numbers, etc.
- Explain the limits of online relationships – Make it clear that it’s inappropriate to request someone’s personal information, photos, locations, etc.
- Make sure your teen doesn’t delete messages – Even messages that are hurtful or don’t “feel right” should be kept. Set aside time to go through the messages with your teen. When in doubt save it for future examination.
Sibling Relationships
Make sure that your children who don’t have DS know that they are appreciated and valued as well. It’s important to show them they are special as well.
Remind them that their siblings with DS are not getting any special treatment when it comes to discipline. They need to know that every individual is, just that, an individual and discipline is unique for each person and circumstance.
Teens with DS will need to know why they don’t get the same freedoms as their siblings without DS. Things like going to the mall alone, driving a car, hanging out with friends, etc. Your teen may notice that they are not getting the same things and this can cause frustration. Be patient and help them understand. Suggest friends coming over to your house instead, or going on a special date with them, or having an older sibling take them on an outing. These small things can go a long way.
Difficult Behaviors
The article linked below is written by David Pitonyak, Ph.D. He is a nationally recognized expert and speaker on the subject of positive behavior support.
Pediatric to Adult Healthcare
GotTransition.org is a federally funded resource center on health care transition (HCT). Its goal is to develop and improve individual’s abilities to transition from pediatric care to adult care. They use strategies to assist clinicians, other organizations, payers, and plans, parents, and young adults in the transition from pediatric care to adult care, thereby improving ways to improve health outcomes.
Post Secondary Education
There are around 270 colleges, universities, and training programs offering services to students with intellectual or developmental disabilities.
Many organizations, such as the National Down Syndrome Congress, recommend Think College as a helpful means of locating and researching post secondary education programs across the United States. Through this site, you can explore various postsecondary educational opportunities on offer in your area for your loved one.
There are also some scholarships and grants available for individuals with down syndrome who would like to pursue post secondary education.
Looking For A Job
A Family Services Social worker should be able to help you find an inclusive employer in your area. Get started at the National Association of State Directors of Developmental Disabilities Services website.
General Medical Care
People with Down syndrome can now thrive for more years than in the past thanks to ongoing research in the field. Experts are uncovering new ways to make life more rewarding for adults with Down syndrome. They can pursue educational and vocational goals, participate in recreational activities, and pursue relationships with others. Great strides are being made in the area of down syndrome and health. Below are some great resources.
Alzheimer's & Down Syndrome
Alzheimer’s disease is a degenerative neurological condition. Damaged nerve cells in the brain result in memory loss, impairment in cognition, and inability of the body to be able to perform a number of everyday tasks. Microscopically, the brain tissue itself demonstrates signs that are often referred to as plaques and tangles.
Alzheimer’s illness develops among individuals with Down syndrome about the same, statistically speaking, as the general population. However, individuals with Down syndrome tend to develop Alzheimer’s illness 20 years earlier than their peers.
Self-Advocacy & Us
We love working with individuals who are self-advocates living with down syndrome. We believe one of our jobs is to empower you to make the most of this life. Your potential for success is nearly limitless; accordingly, it’s important to us that you consistently express yourself. Below is a toolkit for self-advocates from the National Down Syndrome Congress. Also included are resource pages from the National Association for Down Syndrome and the National Down Syndrome Society.
State Agencies & Other Organizations
These links are compiled to help you with other things such as legal and state services.