Survival Tips For Special Needs Parents
Posted on 9th June 2020 at 12:22
By Julie Wales, Special Needs Counsellor
You're not alone... I promise!
Carers UK carried out polling with YouGov for this year's Carers Week to revisit how many people are caring in the UK today, the challenges they face and what the public’s worries would be if they became an unpaid carer.
The top three challenges most frequently chosen by unpaid carers were:
managing the stress and responsibility (71%)
the negative impacts on their physical and mental health (70%)
not being able to take time away from caring (66%).
I am passionate about improving the emotional wellbeing of parent carers, bringing together my personal and professional experience.
The charity Contact, for families with disabled children, say that in the UK there are around 1 million disabled children under the age of 16, which equates to one child in 20.
They suggest that ‘72% of families with disabled children experience mental ill health such as anxiety, depression or breakdown due to isolation’.
When my children were small, I was surprised at how, despite the plethora of professionals who appeared in our life, there was little acknowledgement of the emotional impact on the family. This is echoed by other parents I have spoken to and I am unsure whether this is due to a lack of awareness, fear of raising a potentially difficult topic or something else. Mental health and stress for parents certainly appears in the struggles for parents and the statistics.
It can be really hard.
“My child is struggling and I’m exhausted.”
“My spouse is disconnected from the family.”
“I feel like I’m not doing enough, but I don’t know what else to try.”
Being the parent of a child with special needs is challenging. In fact, it can bring unexpected stresses with spouses, siblings and even within your own belief in your parenting abilities. You try your best to be kind, patient and loving but there are days when you are so tired of the struggles that you just want to quit. I know, I have been there, I get it!
Parenting a special needs child has days which include…
Resentment that every day is filled with challenges.
Uncertainty of what is best for your child.
Frustration with inconsistent information from specialists.
Sadness for dreams unfulfilled (and guilt for feeling sadness about it).
Irritation towards “helpful” advice from those who have no idea about your daily stresses.
Jealousy towards parents who have “typical” families.
GUILT for feeling any or all the above!
1. The biggest struggles I feel are parenting the child and young adult with learning disabilities and the overwhelming feelings that brings.
2. Transition to Adulthood and Adult Services
3. Fear of the Future
4. Finding time for Self-Care
You are not alone in this! There are many others who are also struggling to make it one day, one hour at a time.
So what can special needs parents do?
Find a support system.
When you find others who also are walking this path you discover coping strategies, new resources, and support from other parents who “get it.” You will also find out you are not the only parent who feels guilty about their child’s extra challenges or frustrated because life is so hard at times.
Just knowing you are not the only one makes things a little easier emotionally.
Ask for help.
Asking for help is a sign of strength, not weakness. I myself have struggled in trying to figure out why I was not getting through to my child who had little speech and language skills and could only communicate by pointing and grunting to us.
It wasn’t until I opened up about my challenges and asked for help that I discovered 1) I wasn’t “parenting wrong” – I just needed more information and additional strategies, and 2) there is help out there!
Talk to your…
Paediatrician regarding referrals to specialists.
Adult social care helplines and your local Council SEN offer, local social enterprises, and support groups.
Child’s teacher for additional suggestions to help your child academically.
Clergy, minister, counsellor, or other special needs parents for personal support.
Spouse or co-parenting partner to brainstorm family solutions.
Friends and family for possible “mum’s time out” or couple time out, so you can recharge your battery.
Take care of yourself.
This is where parents struggle the most! “But I just don’t have time for me!” If you want to be the best parent you can be, you need to allow yourself time to relax and recharge your battery.
Think of your energy as a bucket of water,: if you constantly pour out your energy (the water) but never refill the bucket, you have nothing to give at the end of the day.
Here are some quick tips I and other parents have used through the years:
1. Give yourself permission to take 5-10 minutes each day strictly for yourself. (I know, it is hard, but your kids need you to do this)
2. Do something that relaxes you (a cup of coffee, read a few pages from an inspirational or funny book, or just sit and do nothing).
3. Use the buddy system… Put the kids in their strollers or wheelchairs, buddy-up with a friend and take a walk. The kids will benefit from the change of scenery, you will feel energised, and the extra support of a friend is always welcome.
4. Swap childcare. This can be for running a few errands or even an afternoon out. Your kids also benefit from socialisation with other kids.
5. Exercise…even if it is only 10 minutes of cardio or stretching. My son likes dancing in the kitchen to his favourite music: it is so good for both of us! Yoga stretches to relax and soothe his anxiety. Again, this soothes our central nervous system and regulates our emotions to self-soothe us to reduce stress.
6. Counselling is the ultimate form of self-care. Have you thought of talking things over with someone neutral and not part of your family, who really can ‘walk alongside you’ to improve your life?
Take care of your relationship.
For those of you co-parenting, make sure to take care of your partnership. Parents who are exhausted tend to forget to work on their relationship, get irritated and fail to communicate well.
Ways to enhance your partnership include:
A willingness to kindly communicate your need for help. This helps prevent the build-up of resentment between partners, i.e. “Well, she should just know that I’m tired of dealing with doctor appointments!” Remember, the other person cannot read minds! Try using “I” statements, e.g.- "I feel anxious when our son has a meltdown before bed, can we work together on it?" Sounds so much better than “You never help me with him at bedtime…"
Giving the main caregiver a break.
Taking time to be together (even if it is just 15 mins) without the kids, to talk about things other than the kids.
Being a compassionate, supportive listener for each other.
Acknowledging your partner’s strengths.
To the last point… If your spouse is great at handling your child’s homework struggles, step back and allow him/her to help. If one of you is patient in the morning and the other is more patient at night, use that knowledge to plan chores and childcare time accordingly.
Take care to nurture sibling relationships.
It is so easy for much of our energy and effort to go to the child with special needs, especially with the extra doctor appointments, support specialists and academic issues that can be a part of your child’s therapy. Siblings of a special needs’ child might feel “slighted” at times.
If this happens, be assured you are not a bad parent, just a human one and try some of the tips below!
Make sure each child gets some undivided attention.
Even simple things like reading at bedtime or talks while driving to school count! It is the quality, not the quantity that will make a difference.
Engage in your child’s activities.
Ask them about a school project, talk about their day and their friendships, volunteer to make football snacks (cut up oranges are quick and easy), ask questions about the movie they saw with a friend. Your attention to the details in their day will matter.
Include your children in the care of their sibling, as appropriate.
There will be days when they will want to help, others when they do not and that is fine. Caring for family members promotes compassion in even the youngest children.
Give your children information as they want it.
Some children accept their sibling “just how she is” and others want to know “why she uses a hearing aid.” As in anything, children are curious and the more facts they have the better.
Empower your family by accepting what is your “normal.”
Every family does things a little differently, yours included. A child who is in a wheelchair is still your child, he just has a different way of getting around, which is normal for your family. This lesson teaches other children acceptance, compassion and respect for others who also may do things differently.
Problem solve as a team!
There are times when challenges arise, empower your children by having them brainstorm solutions with you. It is amazing what kids come up with, usually things we had not considered.
Show pride in their successes.
All children should “overhear” you bragging about their accomplishments. It is so easy to get fixated on the cycle of struggles but focusing on even the smallest successes or acts of kindness helps a family build each other up.
Invite other families over to play (with social distancing, of course), do not seclude yourself from others. Video call your friends and family.
So remember, you are not alone. There is help out there, and you are going to be the best parent your child could ask for!
This whole life experience has offered me a vocation that I love and may not have pursued, had I not had my son. Counselling families is my passion, and enabling them to cope even better, enhance their achievements and uncover their resilience is immeasurably rewarding.
Believe me, the families I work with have huge resilience, as looking after someone with special needs is tough. We need resilience and care. Self-care is vital. Counselling is the ultimate self-care.
I am passionate about supporting parents, families, and teenagers in improving their lives. If you are a parent reading this and you feel I can help, please get in touch. I am offering a free wellbeing workshop on Friday 12th June over a Zoom video call. Please contact Julie on 07412 651 894 or email email@example.com.
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