Wednesday, February 20, 2013

Are you feeling loss and don't know why?

Often times people without a disabled child wonder why it may be harder for a family with a child with autism to accept or adapt to the disability than parents with children with other disabilities, such as down syndrome or cerebral palsy.  There are months and sometimes years that the parents live in anguish or sadness or desperation.  Recently, I was researching the topic of diversity and autism intervention when I happened upon some information that I thought would be helpful in explaining this.  (Tina, Wilder, Sudweeks, Obiakor, & Algozzine 2004) write about this very topic.  They wrote about the different stressors on families and how families adjust and adapt.  They stated:
                       "Families raising children with autism may be affected differently by the stressor of receiving the child's diagnosis than families raising children with other developmental disabilities.  Because many children with autism are born without any indication of behavioral, physical, or intellectual abnormalities, their parents have "normal" expectations for them.  Unlike parents who are informed of their child's disability near the time of the child's birth, parents of children with autism deal with the stressor of losing their previously "normal" child...It is possible that there are few developmental disorders of childhood that create such complex stressors for families as autism.  These stressors are complex not only because the disability is hidden behind a normal or even "beautiful" appearance but because behavioral manifestations may be physically and emotionally taxing on the family, diagnosis may be difficult to obtain, and coordination of services is often fragmented." 

I wanted to share this because there is often confusion about the issue of autism.  This confusion is not only affecting people who do not have children with a disability, but people who have children on the spectrum and often wonder why they are hurting and feeling such loss.  To make it possible for people to understand and sympathize sometimes understanding why people feel this sense of loss is important.  Sometimes the way other people handle situations puts great pressure on parents to "get over it", when if fact some parents are grieving a loss.  I, personally, have even encountered people who say that feeling sad about your child's disability is wrong and that people should be ashamed when they have feelings like that.  I cannot disagree more.  Do I and will I love my child with every ounce of love I have?  YES! However, do I love that he is autistic and cannot communicate, do I like that he doesn't understand simple requests, do I like that we cannot get him the help that I feel he needs, do I like that his life will be more difficult than most, do I like that my expectations of raising typical healthy children are no longer valid?  NO.  I believe I can be sad about that.  The question is what I do with my sadness.  What do I do with the grief?  Do I let if fester into depression?  Do I feel sorry for myself?  Others may try to get all "Psychological" about the grief and delve into your past, your future, or your hardships...But, I say you lay your burdens on God, the Creator of Heaven and Earth, who knows exactly how you feel and is the only one who can give you true peace amongst your sorrow and sadness.  You can gain this peace through a personal relationship with Christ.  I hope that the information provided from this research can help you to identify your feelings so that you can ask God for help through your grief, if that is what you are feeling and so that you do not feel like something is wrong with you for feeling like this.  It is very common and you are not alone.  Autism is a difficult and confusing issue, as are all disabilities.  I am also not intending to discount the incredible burden those may feel with children with other disabilities, only to clarify why some ASD moms feel a sense of loss.  I am puzzled every single day about new and strange things happening with Jacob.  I accept that this situation is sad, but it is what God has planned for our family and I fully trust Him and his plan.  I pray for answers regarding what I should do for him and in this situation and He gives me strength to get through it.  Its not enough to learn about autism and my feelings, but trusting God is enough. Also, moving on past my situation and allowing God to use it is important and healthy for healing.  I know that while I am feeling a loss, there has been the birth of a new and unique situation that God has allowed in our lives in order to bring glory to HIM. 

 16 “For God so loved the world,[i] that he gave his only Son, that whoever believes in him should not perish but have eternal life. 17 For God did not send his Son into the world to condemn the world, but in order that the world might be saved through him. 18 Whoever believes in him is not condemned, but whoever does not believe is condemned already, because he has not believed in the name of the only Son of God.
(John 3:16-18 ESV)

Have you not known? Have you not heard?
 The LORD is the everlasting God,
  the Creator of the ends of the earth.
 He does not faint or grow weary;
  his understanding is unsearchable.
 He gives power to the faint,
  and to him who has no might he increases strength.
 Even youths shall faint and be weary,
  and young men shall fall exhausted;
 but they who wait for the LORD shall renew their strength;
  they shall mount up with wings like eagles;
 they shall run and not be weary;
  they shall walk and not faint.
(Isaiah 40:28-31 ESV)

do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. 7 And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.
8 Finally, brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things.
(Phil 4:6-8 ESV)

 For I know the plans I have for you, declares the Lord, plans for welfare[b] and not for evil, to give you a future and a hope. 12 Then you will call upon me and come and pray to me, and I will hear you. (Jeremiah 29:11-12 ESV)

16 So we do not lose heart. Though our outer self[a] is wasting away, our inner self is being renewed day by day. 17 For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, 18 as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.
(2Cor 4:16-18 ESV)

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