Dr Safeeya Mo­hammed

guardian.wemagazine@gmail.com

“They choose you, they choose their par­ents,” shared Tra­cy Hutchin­son Wal­lace, co-founder of Autism Spir­it as our first en­counter while pro­cess­ing his di­ag­no­sis. Though Tra­cy isn’t here with us any­more, those words stay with me, and it is the gift that keeps giv­ing, as that line con­tin­u­ous­ly of­fers con­so­la­tion to par­ents of these ‘ex­tra­or­di­nary chil­dren’.

To­day, World Autism Aware­ness Day, I re­flect on that con­ver­sa­tion of six years ago when we re­ceived the di­ag­no­sis, a di­ag­no­sis the doc­tor in me knew, but the par­ent in me did not want to ac­cept. It meant, some­thing was wrong with my child and no par­ent wants that ac­knowl­edge­ment. How­ev­er, the day I viewed autism through the lens of ‘AWE-TISM’ was the day it all changed.

I’m in­clined to be­lieve that autism is an ex­tra­or­di­nary gift. When viewed from the out­side, autism is chal­leng­ing. When viewed from the in­side on a gran­u­lar lev­el, autism is much more than that.

With autism, we are giv­en the op­por­tu­ni­ty to learn how to meet a per­son where they are at, with no judge­ment, just un­con­di­tion­al love.

Hav­ing a child on the autism spec­trum gives to us the op­por­tu­ni­ty to de­vel­op the gifts of un­der­stand­ing, em­pa­thy and ex­treme pa­tience. Autism gives us a chance to be more than we might be as par­ents, grand­par­ents, friends or fam­i­ly. I recog­nised very ear­ly on, this world was not equipped for his ex­is­tence, and it was up to us to cre­ate a world that was not on­ly more aware, but MORE AC­CEPT­ING.

Spend a day in the world of an autis­tic

Many chil­dren with autism have dif­fi­cul­ty pro­cess­ing every­day sen­so­ry in­for­ma­tion. They ex­pe­ri­ence dif­fi­cul­ties in­ter­pret­ing and or­gan­is­ing in­put from what they see, taste, touch, hear and smell.

Pic­ture your­self calm and re­laxed. Sud­den­ly, a stereo blasts in your ears, and you are punched in the arm! An autis­tic ex­pe­ri­ences this sen­so­ry in­put in an am­pli­fied way. What we may ex­pe­ri­ence at lev­el one, they ex­pe­ri­ence at lev­el 100. These sen­so­ry per­cep­tions can be­come fright­en­ing or even painful and can lead to high anx­i­ety and melt­downs.

Rais­ing a child with autism is a con­stant re­silience chal­lenge of ‘snakes and lad­ders’, and be­ing his moth­er is an ex­hil­a­rat­ing roller coast­er ride! A pos­i­tive out­look is key to meet al­most any chal­lenge. We get to ap­proach prob­lem-solv­ing from a unique per­spec­tive. We get to see chal­lenges and out­comes that can be com­plete­ly dif­fer­ent from day to day. We must con­stant­ly be on our toes and use the very best of our abil­i­ties and in­sights.

With­out a doubt, my autis­tic son made me a bet­ter hu­man. I was placed in a po­si­tion to learn how to com­mu­ni­cate with him and help him learn how to com­mu­ni­cate with the world. In my quest to im­prove his life, the lives of so many oth­ers are al­so im­proved. With every life touched with­in my roles as a doc­tor, mul­ti­me­dia host, and ex­ec­u­tive lead­er­ship coach, each per­son that cross­es my path­way ben­e­fits from that lev­el of em­pa­thy and pa­tience. Autism gives us the chance to be some­thing more than just or­di­nary, but ex­tra­or­di­nary with su­per-hero par­ent­ing skills.

Pour­ing love out

The feel­ing of over­whelm and frus­tra­tion does creep in and in those mo­ments, I have to re­mind my­self that I am hu­man, and it is okay to feel not okay, it is okay to lean in. In­stead of al­low­ing neg­a­tive feel­ings to over­pow­er my dai­ly ac­tiv­i­ties and the many roles I bal­ance, I choose to pour my heart to God, and stay in faith, that there is a plan and pur­pose for Musa’s life, as well as my own. The tribe cre­at­ed around us be­comes cru­cial. Self-care be­comes vi­tal. To all par­ents of these ex­tra­or­di­nary chil­dren, I urge you to de­vel­op a self-care rou­tine and not be guilty of it. Re­mem­ber, in or­der to pour out love to your chil­dren, there must first be some­thing in­side. Let’s not pour from an emp­ty cup!

WE can’t pour from an emp­ty cup, but how of­ten do WE try?

Let’s clear up one com­mon mis­con­cep­tion from the get-go: Self-care is not syn­ony­mous with self-in­dul­gence or be­ing self­ish. Self-care means tak­ing care of your­self so that you can be healthy, so you can be the best ver­sion of your­self and serve all the roles you are com­mit­ted to, so you can do all the things you need to and want to ac­com­plish in a day.

If you think you’ve been hear­ing more about self-care late­ly, you’re right. One in­di­ca­tor: ac­cord­ing to Google Trends, the num­ber of search­es for “self-care” has near­ly quadru­pled since the COVID-19 Pan­dem­ic.

Self-care is part of the

an­swer to how we can all bet­ter cope with dai­ly stres­sors and chal­lenges, es­pe­cial­ly when one is a par­ent whose ‘nur­tur­ing fu­el’ is on heavy de­mand. While each child is a unique, a child who is dif­fer­ent­ly abled can wear a par­ent to the bone.

Fol­low­ing are some of the prac­tices I sub­scribe to and rec­om­mend for these ex­tra­or­di­nary par­ents. Re­mem­ber, you have spe­cial needs, too!

1 Give your­self per­son­al time in the form of a walk, med­i­ta­tion, writ­ing in a jour­nal, be­ing cre­ative or some oth­er ac­tiv­i­ty you en­joy. Do this every day. Re­plen­ish­ing your cup is so nec­es­sary.

2 Ed­u­cate your­self about your child’s dif­fer­ent needs. Knowl­edge pro­vides un­der­stand­ing. I found that the more I learnt about my child’s med­ical con­di­tion, the more ef­fec­tive care­giv­er I be­came.

3 Get sup­port. Ask­ing for help doesn’t mean you are fail­ing as a care­giv­er; it means you are wise enough to know the bounds of your ca­pac­i­ty. Many par­ents of chil­dren who are dif­fer­ent­ly abled share that they feel iso­lat­ed. A par­ent­ing net­work or sup­port group pro­vides a com­mu­ni­ty to ven­ti­late the dai­ly stres­sors and recog­nise you are not alone in the chal­lenges.

4 Cry if you must. Stress hor­mones, found in tears, af­fect every sys­tem and or­gan in the hu­man body. Cry­ing pro­vides a healthy out­let by elim­i­nat­ing harm­ful stress hor­mones. Haven’t you found that you feel re­lief af­ter a good cry? How­ev­er, be mind­ful of de­pres­sion, it can eas­i­ly creep in. Know­ing these signs and when to seek ther­a­py is im­por­tant.

5 An at­ti­tude of Grat­i­tude. Did you know that grat­i­tude re­duces anx­i­ety and stress, while in­creas­ing pos­i­tive af­fect? Yes, grat­i­tude im­proves your phys­i­cal health, leads to bet­ter sleep and im­proves your over­all aware­ness and con­scious­ness.

Self-care re­quires check­ing in with your­self and ask­ing your­self how you’re do­ing phys­i­cal­ly, men­tal­ly, and emo­tion­al­ly. Dif­fer­ent peo­ple will adopt dif­fer­ent self-care prac­tices, and even your own de­f­i­n­i­tion might change over time. What is self-care for one per­son will like­ly dif­fer from some­one else, and what’s self-care for you one day might not feel like self-care an­oth­er day.

The more bal­anced, re­laxed, and recharged you are, the more pa­tient, car­ing, and proac­tive you can be as your child’s pro­tec­tor, nur­tur­er, and ad­vo­cate.