How to raise an adult with special needs

There is a lot of information about school-aged individuals with special needs. From IEPs to fun toys and adaptive equipment, there’s plenty of readily available support. However, things can be tougher once your kiddo is not so little anymore.

Encourage independence when they’re young

Yes, we talk about how crucial independence is all the time. But in all seriousness, allowing your child to make mistakes under your supervision while they’re younger can encourage self-soothing, problem-solving skills, and independence. Allowing your child to harness their personal and practical life skills encourages them to grow as an individual.

The fact of the matter is that you will not always be there for them, and that doesn’t have to be a bad or scary thing. It’s important to be a warrior for your child, but it might be just as important to allow them to experience success and failure for themselves.

Understanding that there are aspects of your child’s life that are out of your control is an imperative step to beginning to transition your special needs kiddo into adulthood and make the experience a little bit easier for them.

Look at options for programs where your child can go to interact with other kids. There are day programs, respite, camps, etc. A respite program will do wonders, not just for building independence for the child, but for the family as well. While most families are concerned that their child may not do well or be upset or scared, in most cases, it is the parents who are scared… not the child. The staff at these facilities are trained to work with all individuals with special needs and have plans in place to work with all behaviors. This is their job so let them do what to do best.

Here’s a secret: most children with developmental and physical disabilities are much the same or normal developing kids and the fact is, they do not always want to hang out with their parents. It’s not cool! They strive or desire as much independence as possible to allow them as much freedom as possible while keeping in mind issues which prevent them from achieving this but give them as much as is safe.

Plan ahead

Whether we like it or not, the unfortunate side effect of living is aging. Unfortunately, the entire plot of Peter Pan is not a reality, and your kiddo is going to grow up. This can be especially difficult for individuals with special needs. Thinking ahead to their adulthood can be a great tactic to alleviating stress and subsequent confusion that comes with parenting an adult with special needs.

It is recommended at age 17, before they become a legal adult at 18, to seek out legal guardianship if this is needed. The process can take some time to complete and you want to have everything in place and scheduled with the courts prior to their 18^th birthday

Before your child turns 18 and therefore becomes a legal adult, be sure to consider seeking legal guardianship. If your child is intellectually and/or physically disabled to the point where they require your care, it may be a good idea to seek guardianship of them when they are over the age of 18. According to Parenting New Hampshire’s blog, “To obtain guardianship, the parent or other third person must file a petition with the probate court in the county where the child resides.”

Do your homework

When your child is about to age out of the school system, consider having a conversation with professionals. Whether it’s your occupational therapist, special education teacher, or even pediatrician, where they think that the best place for your child would be after graduation. Depending on your state and school district the age of graduation can be 18 or 21. And in most cases, the amount of available resources for adults is far less than for children creating a bottleneck of available resources for families.

If you are looking at a day program for your child, you should plan to start researching and applying for the wait list at least two years in advance and apply at several different locations.

If looking at work opportunities through an agency or workshop, speak with the school’s transition facilitator on upcoming transition workshops they may have available or agencies that offer such programs. All of these can make the transition from high school to an adult program.

Of course, take all the information that is given to you with an objective eye and a grain of salt. Professionals in the special needs field in your community will probably provide the greatest insights and connections, and if they have been working with your kiddo for a long time, you may have similar insights as to what may be best for your child.

That being said, you know your child best. It’s best to take the guidance of professionals and your own personal experience with your kiddo into account when decision making.

There is no such things as too much information when it comes to making a decision, so being well educated and informed on the matters of your child’s life after school can be a great way to help them transition into adulthood. Find day programs or jobs that will be fulfilling for your loved one.

Learn to transition yourself

One of the things that some parents forget is that their children will not always be young. It’s tough to stop time, and as of right now it’s impossible. Your kiddo will grow older. Learning how they can be more independent and self-sufficient can make you feel unneeded. Sometimes, when your kiddo grows up, you have to transition yourself into a new phase of life. Take up gardening, do some yoga, learn how to make sushi!

This will much harder for the family then it will be on the child. Families that have dedicated their lives to their child sometimes find they have to give up certain things or interests for the greater good. When you find you have more time available, it will take a bit of adjustment.

It takes time

Transitioning a special needs adult into “adulting” is much easier said than done. Just remember to be patient and acknowledge that these things take time.

Always remember that you as the parent or caregiver will always be the strongest advocate for your child, so always be advocating for them. Just like the proverb ‘squeaky wheel gets the oil”, you will need to advocate and push to get what is needed. Not because people do not care but because everyone is busy.

Any of these transitions will require a fair amount of planning and meetings to ensure a proper transition. You will need to follow up with everyone to make sure meetings are scheduled, documents have been sent, contracts have been signed and scripts/doctor’s notes have been submitted. This includes coordinating with your support coordinator for the state, any therapists, the agencies you are pursuing just to start. Everyone is working towards the same goal for your child which is to make sure they are happy, prosperous and independent in life.