Depression

For my research proposal I am studying the depression in the parents of autistic children.  One study shows that around 80% of mothers show severe depressive symptoms the year of diagnosis and about 40% in a follow up a year and half later. Additionally, the severity of the child's problematic behavior and the financial toll that the diagnosis places on the parents are strong indicators of the severity of depression. Is it just me or do ASD parents need some serious support? In these studies, parents that receive support from local groups tend to have less stress induced depression.  I see this as a wonderful opportunity for the Christian community to show some compassion and the love of Christ.  Just a thought.  I love you ASD Moms. More importantly, Jesus loves you and as I read in a recent blog, God knows your suffering more than anyone.  I shared the blog post, but for those of you who didn't get a chance to read it I will paraphrase...

You, as the mom of a child with a disability,  are raising a child who struggles with ridicule, difficulty in everyday situations such as crossing the street and brushing teeth, severe communication delays or inappropriate speech,  and extremely challenging behaviors... You may feel alone.  You may feel as though no one could understand or sympathize with you.  However, God does understand.  He watched as His son, Jesus, suffered ridicule, extreme torture and eventually death on the cross.  No one better understands you.  Our loving Father is there for you, lean on Him.  Put your trust in Jesus because He is the ultimate provider. 

So thankful for our church family and the support we get often.

To view the blog that I paraphrased visit  http://www.gracecoversme.com/2012/06/familiar-sadness.html it is well worth your time

Pre-Evaluation Screening

I wanted to document today's events so that I have a record of each step in the special ed process.  I was feeling a little discouraged after I left the nurse's office, but I am praying that God has Jacob's situation under control.  All I can do is trust in Him.

 

Today was Jacob's medical screening with the school nurse at Hidden Hollow Elementary School.  This is the first step in the evaluations for special education.  When we got there she checked his ears for infections and they were clear! Thank you, God.  However, he couldn't do any of the testing.  They had a chart with lines of letters on them for the vision testing.  He can't read letters or say which direction anything is and he also can't follow even the simple direction to look at the board.  He wouldn't even know what the board was.  So then she proceeded to see if he was able to track things with his eyes.  She used a light to see if he would track it and he did.  She then asked if he could track other things besides lights.  She tried a toy, a sticker, and something else.  He wouldn't even look at those items for a split second.  I got out my iPhone and turned it around to the backside and he tracked it.  I told her that it would have to be something that he is interested in to track it.  Based on those observations she passed his vision test, although she said she hopes that they can do a better screening later when he is older.  She also rang a bell when we got there to see how he would respond.  He didn't even turn in the direction of the bell.  She did the same for two more objects that made noises.  He didn't respond.  I told her that he has had his hearing checked 3 times and likewise with vision he will only respond to noises that interest him.  Regardless, we have to make an appointment with the district Audiologist to double check his hearing.  When we got home I whispered,"Jacob here is the Ipad" and he came running.  I know his hearing is fine.  I am glad they are checking him to be thorough though.  He also banged doors the entire time we were there.  He wouldn't look at her when she called him and didn't respond to most things that I said.  I think the new environment was hard for him. 

 

I know that this journey with special ed isn't going to be easy for me.  Friends have told me it is hard.  One friend told me that she cried every single day after she dropped her son off at class. I can see how that could happen.  He acted like he was completely incapable of listening or learning in the nurse's office.  Each time we do evaluations or anything like this it becomes so obvious that he is so far behind.  It's just not exactly what you hope for as a mom.  Each day is a learning experience for me.  Each time I feel like this, I know I have to make a decision either to let my mind go into that dark sad place or to trust God and stay hopeful.  If this is His plan for Jacob, then I need to be on board.   I am just trying to focus on his strengths and trying to make sure that I see this whole process as something to aid in helping Jacob learn.  I want to stay positive, even through my sadness.

 

I wanted to update everyone on the garage sale.  We made $872.75! I can't believe how well the garage sale went.  What an awesome blessing! Thank you to all who donated.  Also, one of Cret's best friends and his sister donated $260 so we are already at $1,132.75.  We are $567.25 away from our goal so that I can get Jacob his genetic testing.  Once we do I will be sure to post the results.  Thank you again for your support.  God is so good. 

Yearly Evaluation

 

Jacob had his yearly evaluation from ECI today.  I wanted to share his scores.  In the "ADAPTIVE" category he is equivalent to an 18 month old.  He is 44% behind.  In the "PERSONAL-SOCIAL" category he is equivalent to a 15 month old.  He is 53% behind.  In the "RECEPTIVE COMMUNICATION" category he is equivalent to a 13 month old.  He is 59% behind.  In the "EXPRESSIVE COMMUNICATION" category he is equivalent to a 15 month old.  He is 53% behind.  In the "GROSS MOTOR" category he is equivalent to a 27 month old.  He is 16% behind.  In the "FINE MOTOR" category he is not behind.  Praise the Lord! In the "COGNITIVE" category he is equivalent to a 21 month old.  He is 34% behind. 

 

To explain these categories better.... adaptive is his self help skills.  Personal-social is how he interacts with himself, peers, and adults.  He scored at 15 months due to him finally playing with his brother. Receptive communication is how he receives and understand words.  Expressive is how he communicates his thoughts and feelings.  Gross motor scored low because he doesn't throw a ball yet, he only drops it, he doesn't jump from the floor, and he doesn't kick very well.  Fine motor scored great.  Cognitive scored low, but not as low as communication and social, which is promising.  IQ is highly correlated with adult success so I am very hopeful.  Cognition has to do with problem solving, attention, memory, understanding concepts like big and small, soft and loud.  He does not understand those yet. 

 

Certain categories scored higher than he really is due to him being able to do a few random things in the category, such as expressive language.  He can't express anything that he wants expect to be "all done" with sign language.  Everything else is randomly mimicking our words, however the way they did the scoring that counted as him being able to express his feelings.  Also, he scored higher in social because he plays back and forth with his dad and brother, although he won't with anyone else. 

 

His meeting with the school nurse to begin the special ed process is next Tuesday.  He currently has an ear infection that has gotten worse through the last antibiotic and today he was put on another stronger one that he hasn't ever had.  Please pray that his ear will clear up and that we can have simply 1 month of health for him.  April 3rd is his very first evaluation with the school district.  Their evaluations are much longer and more thorough so I am sure they will be able to determine where he needs to be for his class.  Please be in prayer that he will get the BCBA's class, because I feel it will be the most beneficial to him as does his current therapist.

 

This Saturday is our garage sale! We have had so many donations and I am hopeful that we will get very close to our goal for genetic testing.  Our goal is $1700.  I am hoping that we can 1/3 of that and I will have some more fundraisers and save until we can get the testing! If you have anything you'd like to donate please email me, or if you'd like to come check out the sale please come by! Jordan and her friends will be selling either snow cones or donuts to earn $ as well.  Thank you to everyone who donated.  It really means the world to us!



Behavior

Behaviors, behaviors, behaviors....That's the W O R D in the autism world. What is behavior?  Its any observable or measurable act by an individual.  It the response to some stimuli.  I am in grad school right now to become a Board Certified Behavior Analyst and everything we learn is about behavior and the antecedents and the consequences.  Up until now, it has all made sense because I am simply learning about behaviors from a book or clinicals that I am reviewing online.  Jacob hasn't had many behaviors that need changing so far.  We have just primarily been focusing on his adapting new skills and working on communication. 

Recently, however, Jacob has started engaging in some seriously distracting behaviors.  He is obsessed with opening and closing doors and drawers.  Wait...before you say "My child used to do that, or I know a child that does that".... This is not like the typical child who sees an open door and really wants to close it.  He will run from door to door in the house in a frenzy opening and closing the doors, making noises and very upset and then open and close the drawers and then run back to the door and open and close it and then back again.  This will go on for up to an hour, back and forth with no easing up.  If you try to stop him he will scream and contort his body all around in a panic.  If someone is looking in the fridge he pushes the fridge door so hard it hurts and if you don't let him close it he gets very very upset.  In fact, we were at a birthday party the other day at my sister's house in which the kids were coming in and out of the house and he was so obsessed with the door and eventually got so upset we had to leave.  He is also doing this during therapy time.  Additionally, he has started squealing during therapy when Mindy is instructing him so he doesn't have to listen to her. 

So what have I learned about changing these behaviors?  Not much yet.  I know that redirecting and giving different options works best.  Sometimes a parents instinct is to discipline, but when they are seeking to meet a particular need and you just discipline, it doesn't give them the option to fill that need in a more appropriate way.  That's about it.  We have studied behavior, how to define it operationally, and how to graph and document it, but not how to change it yet.  So I asked Mindy.  She said that I need to get those baby doorknob covers on the doors that lead to outside and the upstairs doors.  This will allow me to monitor just the downstairs inside doors to help him.  She said when he is in his highchair I need to open cabinets to let him see them and not let him close them.  I also need to redirect him when he is opening and shutting all the doors.  She said I can't allow him to do it.  Here in lies the problem.  He physically won't let me hold him long enough to keep him from closing and opening the doors.  He just moves in all sorts of crazy ways crying until I let him down and then he goes right back to it, or he acts like he doesn't care so I let him down and then he runs and closes it.  HAHA I have no idea what to do about the squealing during therapy either.  Jacob seems to be getting a bit more aggressive and irritable.  We haven't changed his diet or anything, he is just starting to act out a lot more.  Obviously, it could be that he is getting older.  It just appears that he is having a harder time, though, as well. 

This weekend our family will be on a mission trip with our church.  I wanted to ask for prayer.  Particularly for the mission trip and that it would be a success and God would be glorified.  Secondly, we will be staying in a hotel which will be very hard on Jacob.  He usually can't sleep much for than a few hours when other people are in a room with him.  Also, blitzing and BBC will be hard on him.  When there are a lot of people around that he isn't used to he usually has meltdowns or starts engaging in his repetitive or self stimming behaviors.  However, I didn't want to let this hold our family back from doing what we know God is calling us to do and neither does my husband.  I just would love prayer for our family and that a peace that only God could give Jacob would fill him up.  Please also pray that we can figure out some of these behaviors and get them under control in the future.  I realize this isn't as serious as some of you have to deal with, but for us, challenging behaviors are only just beginning.  I will also be in prayer for those of you with children that engage in behaviors that are hard on them and the family.  I also have heard many people are really struggling with insurance nightmares right now and do not know what to do or where to turn.  God is in control.  I will be praying for peace and understand and guidance for you.

Why Genetic Testing???

We have had a major breakthrough in therapy recently.  Jacob has been mimicking sounds of words for a while.  He doesn't use functional speech (asking for things or requesting or calling us by name) but he can mimic our words.  In therapy, Mindy has been reading him a color book every day.  Well, the little cutie memorized the color book with the "the end" and all and we get to have him read to us each day.  Talk about an amazing blessing!!! Also, Jacob has mastered the "all done" sign in sign language and uses it regularly when he is done eating or ready to get up from his work table.  This is such a tremendous blessing because he is communicating his feelings with us....FINALLY.  It only goes up from here. I can't wait to see how much he progresses within the next few months.  Hopefully, he will develop functional speech soon. Here is the video of Jacob reading his book with his Daddy.

 http://youtu.be/ayTYLCDNEV0

 

Recently, my mom took a new job at Dallas Children's Hospital and found out that if we get genetic testing there, we can get about a 70% discount for not having insurance coverage and paying up front.  We kind of thought genetic testing was a unreachable goal until now.  This means that the $6000 testing can now be around $1700.  Still sounds like a lot of money, right?  Even with that discount Cret still wondered if we should get it.  What are the benefits of genetic testing?  I asked that very questions to Jacob's pediatrician, neurologist, and a friend who is a geneticist (and an autism mom).  Their answers varied, but I wanted to give some insight to those who have asked me what good the genetics testing will do.  I am not an expert on genetics and know very little, but here are some of the answers I received.

 

Benefits of genetic testing:

1.  There are certain genetic mutations that can cause autism, these will be detected in testing

2.  There are certain genetic diseases or health issues that can be detected that may cause significant health problems in the future (as the child ages they may need to be on ventilators, etc) and you can plan for these financially and mentally.  Also, there are certain conditions that they know are more permanent, so spending your life savings on intense therapy may not be the appropriate option and saving for their future may be more appropriate

3.  Once you get genetic testing, you are "in the system" for the children's hospitals.  This means that research studies and scientists looking into the specific genetic mutations your child has will now be able to contact you with information or studies relevant to your child.

4.  The neurologist told me that genetic testing is the standard care for a child with autism.  She was baffled that our insurance didn't cover it because it is the most basic testing for kids on the spectrum.  She also told me that if it were her child she would definitely pay out of pocket to get it done because we can have a better understanding of what is going on with Jacob and his body and health.

 

For all of these reasons I have decided that I would love to get Jacob genetic testing.  I have decided to start saving up for it.  We can't outright pay for it because we would have to cancel Jacob's ABA therapy for about a month and a half, and I don't think it is more important than therapy.  However, it would bring great joy to my heart to get more answers about his health.  There have been some health issues with Jacob that we (myself, my husband, and my mom) have always been curious about.  His digestion is always off, he is extremely small, low muscle tone, always sick...and I am hoping eventually we can get to the bottom of it.  Like his neurologist said, this is just the standard procedure of care for him.  I realize it isn't an emergency to get the testing done, but what mom wouldn't want more answers to a health issue (AUTISM) that raises so many questions?  There is just so much still unknown and I would like to get the very best care for him possible.  I am not in a mega rush to get it done, but have decided to begin saving so that one day we can get him the testing. 

 

We have decided to begin our savings with a fun little fundraiser.  My sweet friend gave us the idea to collect donations from people for our neighborhood garage sale on March 23rd.  We have already had a few friends donate some pretty amazing things for this sale.  I am so overwhelmed and grateful by people willing to help.  Asking for donations and help isn't really the most fun thing in the world to do, but I am so humbled when people are willing to.  Thank you.  Also, Jordan and Skyler and Kaylee will be selling snow cones at the garage sale to earn money towards his genetic testing and we will hopefully have signage up for the worldwide autism awareness day on April 2nd.  April 2nd is "Light it up blue" for autism day and last year we had signs up, wore blue and had blue light bulbs in our outside lights.  My super sweet sister did that as well.  She is such an amazing gift to my life and our family.  Anyways, its a pretty cool day to raise awareness for people on the spectrum and the much needed research.  If you have a business that would want to participate in the worldwide autism awareness day or you personally want to light it up blue for autism on April 2nd please visit autismspeaks.org for more information. There will be some major businesses in downtown Houston that will be all blue for that day.  It should be pretty cool. 

 

 

 

 



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)