Parents of children with disabilities face great sadness, fear, worry and more from loved ones and even family members, regarding their little angels with eyes of spite, concern and even disbelief they are really disabled at the time.
The change in routine and the emotional stress from dealing with "normal" so to speak siblings, who often fear they are loved "less" by their parents because more time and effort is being consumed by the brother or sister with special needs, can be difficult.
Whether it's Cerebral Palsy, mental retardation, amputation, traumatic brain injury, down-syndrome or a learning disabilities like ADHD. Dealing and coping with the problems that come with children with special needs or a specific disability and for those who care for them daily most certainly build up over time, often leaving a parent with a mixture of emotions they have to hide and cannot share--with anyone.
FINANCIAL BURDEN OR HARDSHIP -
When a parent first discovers their baby or child has a disability, they do not stop to even think about the costs and how it will affect the family in the long run. All they can think about is how to help their child.
Medications, therapy, counseling, rehabilitation and physiotherapy, occupational therapy, social and emotional development and schooling, all of these lead to money being swept away from families in order to help aid their child through life. And if you are a low income family, the devastation financially can make a parents job to take care of their child more difficult. Knowing where to turn, financial or government programs available, can help ease the strap on an otherwise empty wallet.
Look for support through your community support workers and offices. Here in BC, Canada, we have Child Development agencies which can help ease the burden financially for the things a child needs, while coping with their disability. Costs can run high, and sacrifices will need to be made--by all family members, in order to make it through the trying times.
Take my four year old son for example: He was born with Cerebral Palsy (mild) and did not walk or talk before his second birthday. But it was while he was a baby he faced his greatest challenges, with illness, problems communicating, breathing problems and so forth. The cost of travel back and forth to Children's Hospital, where he began treatment as an infant, was hard considering we lived four to five hours away.
Paying for parking, meals we needed while he was getting treatment, accommodations, because we lived out of town, and then finally the decision of sacrifice, to move because costs grew too quickly and got to be too high for our family to cope. We still had two other sons to care for, sons who did not have special needs.
There were medications, orthopedics and special devices our son needed to help aid him walk. Speech therapy, to help him learn to form his words correctly, so that we could communicate with him. Developmental classes for early help with socialization with other children in his age category. Add all of these things up, and then add in more children you love and care for, who also have needs.
The cost is overwhelming!
My 3 year old son who might have Asperger's having a melt down
THE ISOLATION -
Families can find themselves isolated from their support circles (family and friends) when dealing with a child that has special needs or disabilities. Nobody is to blame. Many people do not know how to help or even cope with the realization that a child could have such problems, and in turn they do not know how to act around not only the child, but the parents as well. Depending on the severity of the disability, some families have to spend all their time to come up with coping strategies for both their child and themselves, along with other friends and family to make the disability easier to deal with.
Many families stop socializing when they discover they have a child with special needs, out of fear for how that child and they will be received by the public and those around them that matter to them, how their child will be loved while they learn to deal with the issues at hand.
Some families pull away, make new friends and find new families in the special needs community who can better understand the hardships they are facing, the struggles they are going through, the guilt, loss, anger, pain and fears that go along with raising such a child, to help aid them in not feeling so alone, empty and disregarded by those who are supposed to support and love them.
Many people do not understand how great a role ISOLATION plays for those once they discover they have a special child with special needs who needs more than just love, and the social acceptance parents wish for their child.
SOCIAL ACCEPTANCE -
It is very sad that still, even today in our society that many children and adults who suffer with disabilities are socially unaccepted. You can hear the whispers and the judgements that made behind closed doors when those who do not understand speak their mind.
"Look at how that child behaves... that's awful!" (A child with Asperger's acting out in a mall because there are too many people around and having a melt down can be perceived as spoiled.
"That family cannot cope with that poor child and needs some help." Regarding the actions the family takes in order to deal with their Aspie kid, acting out, and how they help their child deal with the issues at hand.
Passing judgement, accepting a child or family socially are two things a family faces in dealing with a disabled child, especially a child who does not wear their disability out in the open for all to see. Even from close friends and family, everyone has an opinion on how the family deals with things and the issues they face. It is not easy. It is difficult, and it can be disabling in itself to a family who is already struggling to cope and keep their heads floating above water.
Social Acceptance with the passing of judgments is something all families face when dealing with a disabled child. Even from their closest friends, everyone has an opinion on how the family deals with the issues they face. It's never easy and sometimes is disabling itself to the family who is already trying to keep their heads above water.
The list goes on and on for a family dealing with a disabled child -- social acceptance, isolation from family and friends, judgement, snickers and sneers, the cost of medicines and therapies.
One way you can help, is to become informed, before passing judgement. Discover the situation the family is in. If it's a disability you don't understand or have even heard of, do the research, before removing yourself or passing out your opinions. Be supportive! Otherwise you are making the road the family is traveling down filled with more pot-holes, pits and danger than they need, as they are already coping with enough.
And remember, no one is perfect, least of all human beings. Each of us is disabled in one way or another, whether it be physical or mental. Depression, handicapped, OCD, Fears that keep you from living your life, Cerebral Palsy, Asperger's, ADHD, Anxiety Disorder, Panic Attacks... the list goes on a mile long and each of us has experienced one form of a disability or another.
Don't leave a family dealing with disabilities lying in the darkness alone. Provide them some light and you will be amazed at the rewards that will follow for both the family and--you.
Writer's Note: If you are a parent of a child with special needs. Don't despair if you feel the ways above I described. check out your local community resources for groups to join, call your local mental health unit for children as they often have programs as well.
These children are all God's little angels and they were placed on earth for a purpose, to make us stronger, teach us our own limitations, how to love and how to forgive and fly free.
You are not alone...
Charlene Gallant from Cape Town, South Africa on September 14, 2020:
My beautiful son passed away recently:( he was severely disabled and we loved him unconditionally even though it was tough. I miss him and I would do it all again in a heart beat
Hifsa Batool on November 06, 2015:
this is very informative page, how can i cite this page in dissertation, please guide for reference making
sara on November 20, 2013:
may allah help them in there life and give them shifa
muhammad ashraf on June 04, 2012:
(IS ANGEL or person WHEN HELP ?????)
I AM IN PAKISTAN I HEAVE TWO(2) SONS AND FOUR DAUGHTERS MY THREE DAUGHTERS IS PHYSICAL TOTALEY DISABLED age 13 and 8 and 5 years NO SIT AND NO STAND NO EATE NO DRINK BY HEAND DUE TO PHYSICAL TOTALLY DISABLED ONE DAUGHTER IS HANDED OVER TO LAW SISTER I AM RELAETED A POOR FAMILY IN PAKISTAN I AM VERY DISTURB I WANT HELP AND TREATMENT IN ANY ONE COUNTRY ANY ONE HOSPITAL IS PERSON WHEN HELP ME? AND PLEASE HELP ME AND TREATMENT AT YOURS COUNTRY FOR GOAD PLEASE HELP ME I WATING FOR YOUR CALL LETTER PLEASE ISUE MY THIS NEWS IN ALL NEWS PAPERS i want treatment in handicap in canada due to iam very poor person and my 3 daughters is disabled please approved and order for addmetion in handicap Hospital in canada of my three disabled daughters I WANT SPANSAR VISA AND ADDMISION IN HANDICAP INTERNATIONAL WITH 3 ATTENDAT NO 1 MUHAMMAD ASHRAF DUE TO FATHER ATTENDAT NO 2 TAHIRA BI BI DUE TO MOTHER ATTENDAT NO 3 FAISAL SHAHZAD DUE TO BROTHER I AM FAITH FULL
MY ABL BANK ACCOUNT NO (00120605789) BRANCH CODE NO (0262) I HAVE NO COMPUTER AND INTERNET PLEASE CONTACT MY HOOME ADDRESS i want addmetion in handicap hospital in canada or uk or any astablish country handicap hospital ONE DAUGHTER IS HANDED OVER TO LAW SISTER DUE TO VERY POOR PERSON PLEASE HELP ME
VILLAGE MALAK WAL DISTT: M-B-DIN PROVINCE PUNJAB OF PAKISTAN MY MOB:PHONE :NO (03338008724)AND(03038008724) AND (0546582818) HOME ADDRESS AS UNDER NAME: MUHAMMAD ASHRAF S/O MUHAMMAD YASIN (SABRI-CHISHTTI ) VILLAGE MALAK WAL
P.O. MALAK WAL DISTT M-B- DIN (NEAR (P.B.S.) PRACHA PATROL PUMP ROAD MIANI -BHIRA MALAK WAL
PROVINCE PUNJAB OF PAKISTAN MOB NO (03338008724 ) ( NOTE ; PLEASE ISSUE TO ALL CONSREN DEPARTMENT AND ALL NEWS PAPERS DUE TO I WANT HELP AND TREATMENT OF THREE TOTALEY DISABLED DAUGHTERS ) MY E MAIL firstname.lastname@example.org
MY C V AS UNDER NAME MR MUHAMMAD ASHRAF S/O MUHAMMAD YASIN D.O.B. 01-01-1970 EDUCATION
FA AND DHMS 4TH YEARS DEPLOMA OF HOMEUPATHIC
muhammad ashraf on May 23, 2012:
I AM PAKISTANI I HAVE 2 SONS AND 4 DAUGHTERS BUT MY 3 DAUGHTERS IS PHYSICAL TOTALLY DISABLED NO SIT AND NO STAND NO EATE NO DRINK BY HAND ONE PHYSICAL DISABLED DAUGHTER IS HANDED OVER TO LAW SISTER DUE TO NO HANDEL 3 DISABLED DAUGHTERS AT A TIME I WANT FREE TREATMENT IN HANDICAP INTERNATIONAL HOSPITAL IN UK OR CANADA OR ANY ONE COUNTRY DUE TO NO TREATMENT IN PAKISTAN PLEASE APPROVED AND ORDER FOR SPONSAR VISA +ADMISSION IN HANDICAP INTERNATIONAL HOSPITAL COPY TO ALL CONSERNS AND ALL NEWS PAPEERS DUE TO 3 PHYSICAL DISABLED DAUGHTERS MATTER PLEASE HELP IS ANY PERSONS ?? WHEN HELP ME AND MY DISABLED DAUGHTERS I AM WEATTING FOR RESPONS PARTICOULARS AS UNDER
I AM GOVT SERVANT IN PAKISTAN RAILWAY SINCE 20 YEARS PLEASE HELP ME I AM VERY POOR AND VERY VERY DISTRUB
NO 1 DISABLED DAUGHTER NAME ; SEHRISH HEERA S/O MUHAMMAD ASHRAF D.O.B 17-10-1998 REGISTRATION NO 34401-6042059-0
NO 2 DISABLED DAUGHTER NAME : FARHEEN SADAF S/O MUHAMMAD ASHRAF D.O.B 18-04-2004 REGISTRATION NO 34401-6033604-0
NO 3 DISABLED DAUGHTER NAME : REDDA SIAQA S/O MUHAMMAD ASHRAF D.O.B 01-01-2007 REGISTRATION NO 34401-2387657-4
ATTENDAT OF PATAINT DUE TO HANDEL FOR DISABLED chailds
NO 1 FATHER NAME :MUHAMMAD ASHRAF S/O MUHAMMAD YASIN D.O.B 01-01-1970 REGISTRATION NO 38401-9894440-5
NO 2 MOTHER NAME ;TAHIRA BI BI HUSBAND MUHAMMAD ASHRAF D.O.B 01-01-1971REGISTRATION NO 38401-9320220-4
NO 3 BROTHER FAISAL SHAHZAD S/O MUHAMMAD ASHRAF D.O.B 15-04-1997 REGISTRATION NO 38401-8062527-9
ABL BANK ACCOUNT NO 00120605789 BRANCH COAD 0140262 MANDI ROAD MALAKWAL
BY POST MAILE ; ADDRESS ; VILLAGE AND POST OFFICE MALAKWAL MUHLLA MUSTAFA ABAD NEAR (PRACHA PATROL PUMP)
DISTT; M.B.DIN PROVINCE ;PUNJAB OF PAKISTAN MOB NO; 03338008724 AND 03038008724
e MAIL ADDRESS email@example.com
Erin on April 21, 2012:
My 11 year old daughter has LD, ADD, ODD and it is a living nightmare at home. when she is in school she is the sweetist little angel you would ever meet looks can be so decieving it's not funny. No one seems to get what I go through when she is at home the only relief I get is when she is at school. The school staff, doctors can look at you like your the insane one with the problems.
Marilyn on February 20, 2012:
My son has aspergers never never assume a child is normal until you live with that child you wont ever understand!!!
Michele on November 20, 2011:
Thank you for sharing this. I have to say, I should have stuck with just reading the article, and not the comments, because upon reading the comments I had the misfortune of reading this: "That does NOT look like Asperger's to me. The child looks and sounds perfectly normal, albeit upset. He probably doesn't like being referred to in the 3rd person." What the heck?? Isn't that EXACTLY what the article is asking people NOT to do??? Even if you have experience with special needs children, that does not entitle you to make those kinds of judgements about a child you do not know. Jpshaw, your response was much more gracious than mine would have been. Thank you for sharing your insight with us.
melodyandes on November 07, 2011:
This hub truly touches my heart. I really appreciate the parents who carry the hardships in raising their disabled children. God bless them and so to you!
jackie on August 07, 2011:
i have a learning disabity and child walfare has my kis this is not far child walfare can stop being cheap and give me my kids and put supports in the house
Santosh SHrestha on July 07, 2011:
A great informative hub for the parents of disabled children! I think your great effort will help people accept disabled people in society. This has been a great challenge to convince such parents that why their disabled children act in a certain way and need them protection and care.
Dave Thomas on June 13, 2011:
Palsy is extremely challenging to exist with. Thanks for constructing a solid site to tell others on this horrible disorder.
Sher Lessons on February 20, 2011:
Very informative hub. You did a great job describing the aspects from a parents view. I am the mom of a 23 yr. old with multiple disabilities. Her disabilities are not obvious and a lot of judgment has been passed. It has been a long exhausting road with her and continues to be. I am linking to your page if you don't mind. Keep up the great writing.
Judewk on May 29, 2010:
Hi, have you heard of Indigo Children/adults?
Check this site out
It is a classification system to me and nothing more. Be within the governed walls of the Bible.
And for the comment you typed about referring to your son in third person because that is how child development told you to deal with situations like these, my take on it is that every child is a different unique individual so maybe that piece of advice might not be the best. Look for other methods of talking to him and see which ones get the best response. There is not enough information for me to gauge if you should continue how you're speaking to him or switch to something else. However, if you're okay with the response you receive and talking to him in that manner, i think it's completely fine and you should carry on.
From the short vid about your child having a meltdown and the way you handled it, I think you're doing a great job as a Mother. Keep it up :]
God Bless, Jude
Cari Jean from Bismarck, ND on May 07, 2010:
This is a fantastic hub about how families deal with their special needs children and how it affects those around them. Our daughter is six and has CP. She is outgoing, bright and beautiful which I think helps people accept her but every so often we get the people staring which always upsets me a little.
jpshaw (author) from Fraser Valley, BC Canada on April 15, 2010:
Thank you Lynda for your comments. I only refer to him in third person because that is how child development told me to deal with situations like these, he's been seeing them since he was four months old. That video was a mild tantrum or meltdown but we have since discovered he most likely isn't an aspie kid but has some ocd tendancies and right now he is in a group through the ministry to teach him how to deal with anxiety which he has a lot of, teach him coping skills. It's stupid I know to talk to him in third person, I never agreed with it, but it's what he responds to, if I say are you upset he doesn't understand the question. He references names for everything.
Perhaps you have some more advice for me, since you are more an expert than I in dealing with special needs, because you are right it's exhausting lol.
Lynda Gary on April 14, 2010:
I've spent the last 21 years raising special need children; first, my own, then other children who needed a mom.
Quick comment about the video: That does NOT look like Asperger's to me. The child looks and sounds perfectly normal, albeit upset. He probably doesn't like being referred to in the 3rd person, "Is Trace upset?" and he immediately responded to Mom when she started speaking TO him rather than AT him. An aspie child in a melt down or rage is SO MUCH more out of control than this video shows.
As for all the other issues of being a parent to special kids, yeah, man, it's just so damn exhausting...
Katie McMurray from Ohio on April 05, 2010:
jpshaw, great hub, my daughters 11 and 13 have neighbors with disabilities, they are great and patient with them and spend countless hours getting them to come outside and try to peddle again if they like as my daughters walk side by side along. The girls tell me we just don't know yet what their gifts are but they are very special for sure. They are a gift alright, to us all. Thanks and Peace :)
jpshaw (author) from Fraser Valley, BC Canada on March 18, 2010:
Thanks starme, yep that is the hardest part for all people involved. I have a hard time going to friends houses who don't understand why my son acts a certain way, due to his disabilities and I basically can't take the comments, so you find alternatives, other parents who have kids the same, gives the kids and me more freedom.
Destiny Rose on March 18, 2010:
A very informational and informative hub , I have a very good friend who has a child with a disability and it seems to isolate him as you said , I am always trying to bring him out of his shell, nice hub , great work !