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)

The Neurologist Suspects Tourette Syndrome

The neurologist appointment today went well.  She spent about an hour with me discussing everything I had been saving up over the past year.  I forgot how extremely nice she was.  Anyways after watching him and explaining how his normal stimming is (slow repetitive movements, looks like he is on drugs) and comparing to his new rapid head movements, when his facial expressions change and everything, she feels that it is probably the onset of Tourette Syndrome.  She said the condition usually starts at this age and due to the rapid, not soothing nature of the movements she felt it was Tourette's.  She did not diagnose him because I was unable to tell her if he has any verbal tics.  He has a lot of repetitive sounds that have no meanings, but that is probably just stimming.  She told me that verbal tics are normally sounds made in the throat or heavy breathing or clicking.  I will look for that, but either way there is no treatment or cure.  Sounds so familiar.  Anyways she said that his head movements look like stereotypical "tics" which is what another pediatrician told me as well.  The bright side to this is that no medication or further action is needed.  She was positive it wasn't seizures and since he isn't acting like his head hurts she didn't feel like it was a more serious brain condition. 

Jacob was a nightmare in the waiting room.  It's like he knew we were at the neurologist and decided to put on a show.  He was jerking his head all around screaming repetitive sounds and running in circles and then opening and shutting doors about a hundred times.  He even grabbed a little girl and wouldn't let go.  It was bad.  I felt sad for him.  I kept trying to pull him out of it, but he was really worked up.  Then I had to fill out those dumb forms about his milestones.  Seriously, at what point do they stop making me fill out forms that don't pertain to him at all?  Its frustrating.  If anyone is wondering what the typical 30 month evaluations look like I took a couple pics.  I wanted Cret to see what Jacob is supposed to be doing according to the age appropriate forms they give us. In response to question "Are you concerned that your child isn't speaking as well as the other children their age?" I just wrote "He doesn't speak".  I tried to laugh about it instead of getting all sad.  Still is sad though.  As we were about to go into the office another child came in.  She was severely handicapped.  She couldn't move at all and was strapped in to her wheelchair and was making really loud noises.  I watched as everyone stared at her and her mom just put on a brave face.  I wanted to just give her a big hug.  Man, its so easy to be so sad and worked up when I am so focused on me and on Jacob.  We have it so good, don't we?  I just thought to myself, "I have to get out of this funk and change my focus and just give it God".

  But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong.
(2 Corinthians 12:9-10 ESV)

 

Bolting

Bolting is a common problem with children who are on the spectrum.  Jacob is a "bolter".  No matter where we are I have to have him in the stroller buckled up or be holding him as tight as I can because he wants to run in the opposite direction anywhere we are.  When someone opens one of our doors in the house he takes off running as fast as he can to get outside.  Until recently it hasn't been a huge issue for me.  Today, Jacob has discovered how to unlock the doors in our house. As you can imagine, this is extremely frightening to me. Luckily we have chain locks on our doors, but we have to remember to use them every single time we open them and we have to make sure anyone who is watching him remembers to do so. I haven't gotten to the section on treatment plans for this behavior in my studies yet and was wondering if anyone had any advise on how to start teaching him not to bolt.  I would absolutely love to be able to walk with him into church or different places holding his hand without him trying to sit down or wiggle out of my hand in order to take off running. As frustrating as all this is, I am really happy that he is learning how to do new things. He is also doing amazing in ABA. She is currently teaching him shapes and basic noun identification like umbrella, chair, pencil, etc.

We are heading to the neurologist today as a follow up since he hasn't been in a year and in order to show her the videos of Jacob's unusual head movements. I feel like it is probably just visual stimming, but is like to make sure. Please say a prayer that all goes well. 

Encouragment for today

Today I found myself re-reading a pamphlet I got from church a while back and it just made me so happy because I often need a reminder of Gods truth in hard times.  I don't know the rules of plagerism on blogs but I am going to word for word copy some of this (except adding in my sons name).  I want all of the other moms with children with disabilities to be able to be uplifted by it as I have been today.  This is taken from "Help for the Caregiver" by the Christian Counseling and Education Foundation

"When we use a phrase like, "he's the spitting image of his father," we usually mean that the son displays the physical characteristics of his earthly father.  He looks (and perhaps acts) like his dad.  In a similar, but far more profound way, we resemble the God of the universe, both in his character and actions.  You and the person you are caring for are created in the image of God (Genesis 1:26-28; Psalm 8:4-8).  God made us to reflect his image to the world.  We don't do this perfectly because of sin and disease, but no matter what our disabilities, we never stop imaging God! Jacob is no less an image bearer because of his autism than someone who is not autistic.  The person you are caring for also bears God's image.  The Gospel is about renewing the true image of God through Jesus (Ephesians 4:24; Colossians 3:10).  This process is not derailed by illness and disability.  Instead, God uses these things to make us more like him.  God promises he will complete the work he began in each of us (Philippians 1:6).  This means that God is doing his transforming work in the person you are caring for and also transforming you as you face the challenges of caregiving.  He is perfecting the character of Christ in both of you in the midst of your struggles.....In the Bible, depending on others is the normal way to live.  Please don't suffer in silence; instead ask for help.  Ask family, friends, and your church community to help you.  And then accept the help that is offered.  Even if those who help might not do things exactly like you, they can still be a blessing to you.  Combat your tendency to be "the indispensable one" by sharing your struggles with those around you and accepting the support that others give."

I had a lot going on this weekend.  I was in training for grief counseling Friday night and all day Saturday and I went to a support group with other moms of autistic kids on Saturday night.  All I can say is that it was a heavy weekend.  One interesting thing that I learned in the training was that we are not a society that allows people to grieve.  Companies only give 2-3 days off for the death of a child.  When people are still crying a month later others often wonder "whats wrong with them" or "haven't they given it to God?".  The Bible never says not to grieve.  It says to mourn with those that mourn.  In a similar way, I feel that sometimes us special needs moms feel the need to always put on a strong front for everyone.  We don't want to admit that sometimes we just need prayer, or a hug, or a shoulder to cry on.  I loved meeting with other moms that have gone through similar, if not harder times than I am with my little guy.  However, as I suspected, I left feeling sad.  Some part of me wanted to go there and hear a bunch of people telling me everything was going to be just fine and great and in a year it'll all be ok.  I wanted to hear great stories about insurance and the public school system and how special ed changed their childrens lives, but unfortunately thats not the  case.  I heard from moms struggling with the very same things I am.  I heard about children getting hurt in class and I heard about how the moms whose insurance does cover ABA were so thankful and the ones that don't were so upset.  I did hear about a few exceptional teachers and it wasn't all sad talk, but because it was my first time in a setting with all ASD moms I felt a little overwhelmed taking it all in.  Maybe it was a big reality check for me.

I am so so thankful to have found this group because they are all so kind and they gave me so much information that I will need in beginning the journey through special education in the public school system.  I was able to see how these women unite together in order to encourage each other and share their struggles.  I could openly talk about what I was feeling and I could know that they knew exactly what I meant.  I have to just encourage you to find a group if you do not have one.  Know that it may not all be talk of rainbows and sunshine, but you will be fed with important informaton, and you will encounter people that know just how you feel.  That is blessing to me in so many ways. 

"Providing holistic care to someone whose chronic illness or disability you cannot fix is both difficult and redemptive at the same time.  Let Paul's words encourage you today: "Therefore, my dear brothers, stand firm. Let nothing move you.  Always give yourselves fully to the work of the Lord, because you know that your labor in the Lord is not in vain" (1 Corinthians 15:58).  God has entrusted you with a unique opportunity to minister the gospel of Jesus Christ in both word and deed.  Although you may sometime feel that no one knows what you are going through, God sees you.  he knows all about your struggles and sacrfices and he is with you, ready to help you in your time of need."