Friday, June 24, 2011

Asking for your help.

Hello dear friends!!  I am still around just going through a busy spell with grandma moving out, yard sale, end of the school year (report cards) and another roller coaster ride for support for my son.  I am calling on the experts out there hoping to get some answers today.  For those of you who know, my son has had some exceptional challenges over the past few years.  I shared long ago what it was like for my son to have Sensory Processing Disorder.  I shared that he has had multiple assessments and diagnoses. Our journey is not over yet.  About 2+ years ago after a comprehensive assessment we were no further ahead with answers...with the exception of the psychologist's comment that I have a very complex child who would need further assessment between the ages of 8-9.  Flash forward to now.  My son will be 9 in a few short weeks. We are awaiting the autism referral.  The problem is that the previous assessments are very confusing and so his referral is "complex" too.  They are not entirely sure what to do (as in do the assessment or not)...One of the key factors in this process is Andrew's previous diagnosis of DCD (developmental coordination disorder).  The woman  from the referral team I spoke to said that if he has DCD he will not get an autism diagnosis.  I seriously do not understand how that can be.  Co-morbid conditions exist.  If you are a professional in this field or know someone who can share some insight could you please e-mail me or post below.  It frustrates me to no end that I have professionals who SEE that my son has Aspergers and yet somehow we are not getting this diagnosis.  I am a special education teacher and honestly although I cannot diagnosis him from a medical standpoint he is a child with Aspergers for sure.  He is very high functioning and yet has some significant delays, impairments, language issues, narrow interests and non-verbal communication problems (very low social skills) and more.  Thank you for reading this, sharing this with others and for your input.  I will continue to support my son in whatever ways I can...I am just tired of a system without answers.  And for a mum who has been working on this for so long, jumping through the hoops etc it would be nice to know how I can help him next.  Interestingly, my journey as a mum with special needs has certainly helped me in my role as a special education teacher.  It is always a blessing to be able to work and talk with families and help support them on their journey too.

Hugs;
Alli

100 comments:

melissac said...

Hi Alli!! I have been a reader of your blog on and off for several years. I did not realize your son's diagnosis with SPD and being a "complex" child. I have no advice or suggestions but wanted to tell you I'll be praying for you. I too have a "complex" child - our psychologist works hard with us to find ways to help our Nat (6 yrs old). So far her challenges have not shown in school so I can't relate to that part of your story. However,while I am a regular ed teacher I have worked with special ed students in my classroom for over 13 years. I never thought I would be the mom of a child and here I am. I definitely agree though that all I am going through with my DD is helping me to be a much better teacher and to understand the parents of my students as well. Sorry to ramble I just wanted you to know that I will be praying for you and keeping your family in my thoughts. Blessings!!

crazymom said...

I feel terrible that I don't have answers for you or even a way to help. What I can do is pray for your sweet son and for what sounds like an his amazing mom who needs support and answers! ♥

carole (TruCarMa) said...

Aww... hugs, girlie. You know I understand how frustrated you are. I ache for you, my friend. While I have no answers, and I'm not sure what the differences are between getting what you need for your son in BC vs. the US, I have a very good friend who is an AMAZING advocate for her son with Aspbergers who happens to live down the street from me. Let me chat with her and if she thinks she might be able to help, I'll email you her contact info or give her yours. Hang in there, sweet friend. Love & hugs.

Robyn said...

Good Morning Alli-
As someone already commented I'm not sure the difference in services between BC and the US. I did how ever find this site that might be helpful to you and they have an international conference in Seattle in October 2011.
http://www.usautism.org/

In one of what seems to be a past life of very long ago I was an advocate for some families that had children of special needs, do you have an advocate or does your system even support a component like that? I found it to be so helpful to the families to have an impartial set of eyes,ears and voice to support them in what really would work and what wouldn't work on a day to day basis. Best wishes my friend.

Sheri said...

Hi Alli,
So sorry for your challenges. I don't have any experience in this but I have a friend who has an 18 year old with Autism. She wrote a really great book. It may not apply to your situation but because I don't know it fully I thought I would pass it on.
http://www.amazon.com/Coach-Yourself-Through-Autism-Spectrum/dp/1849058016/ref=sr_1_1?ie=UTF8&qid=1309106129&sr=8-1

alhill said...

Hi Alli,

We talked on the phone a few years ago. I am Susan Unger's friend from Calgary and I have two children with Tourette Syndrome (TS) and a bunch of other labels that go along with the TS diagnosis (one of which are sensory issues) I had not heard of DCD before reading your blog and just looked it up. My understanding of Aspergers or Tourette Syndrome (which has a lot of overlap) is the gross and/or fine motor skills are often developmentally delayed. I guess I can say that my boys have this too! What the woman from the assessment said does not sound right to me. I also have had frustrations with a diagnosis for my son. He was not diagnosed until he was almost 12. It is so important to find the right team. We travel to Edmonton for our Psychiatric care at a TS clinic but have a wonderful psychologist locally. Between the two of them we get exceptional care, strategies, guidelines and true help. It is truly a difficult journey.

If you truly believe that Aspergers is a possibility, could you try to find a specialist in Aspergers and travel if you must? You have probably talked to groups like Autism Speaks Canada. Maybe someone can give you a good recommendation for a specialist to work with. I know that Graham's psychiatrist has people from all over western Canada see him, even though there are other specialists closer (a new clinic opened here in Calgary but I don't want to change because my boys have such a great relationship with Dr. Carroll in Edmonton)

I so agree with you regarding becoming a better teacher. I use so many strategies in my classroom that I have learned from my boys. I now do in-services to teachers, through the TS Foundation, and try to pass on the strategies that not only help children with disorder but all children/students!

I applaud your search for answers and I hope one day you will have more answers than questions. It does slowly get better (emphasis on slowly!)

Take care,

Adrienne

ShadowsInLight said...

Thank you so much for posting this. We have a son with developemental delay and are at present going through an assesment. Todays good news is that the phycologist is convinced that he is not autistic (yeah!) however he has some features of autism (huh?)...we are confused. Your post made me realise that there are other possible reasons for his behavior. I'm so sorry that I can not be of help to you but thank you for having the courage to ask for help as it inspired me to look further into this matter.

Kari D said...

I am always so amazed at your creativity and design! Alas, I have no answers for you, but know that you have and will continue to use creativity to solve the problems that are in your and your family's path. It is so hard to find answers when there are so many questions. My sister has an almost 4 year old with autism. She is trying to find her way through the maze of a system with so many rules and procedures...I am impressed at how both of you continue to push and prod and probe to move forward, looking for the next step in the process. My thoughts and prayers are with you. THANKS so much for sharing with us.

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Tara L Paton said...

Hi Alli, my cousin Glenda passed you posting on to me thinking perhaps I could offer some advise as I have an 8 year old son with Autism.

The diagnosis period (from 3 to 6 years old) was painful, stressful and frightening. We're in Calgary and were referred to the Alberta Children's Hospital where they have a pre-school assessment team. That was the key to our diagnonsis. Prior to that referral from our Pediatrician (a develmental specialist Pediatrician), we were bouncing around from specialist to specialist.

I'm not familiar with the BC system so not sure if there's anything like this.

Another key to our success was finding the right Pediatrician. As mentioned, he's developmental specialist. He's seen these kinds of cased for years. His experience and insights have been bang on.

One the best tips he gave us, getting a widely recognized diagnosis (label) will help in accessing funding and support for your child. Find out what it takes for you son to access the maximum about of support, therapies, etc.....push for it.

Remember, whatever the diagnosis, he is a unique individal with unqique skills, abilities, talents and challenges. The diagnosis is only a label that various administrators need to justify support. Embrace whatever label you need to get him the support he needs.

You're doing all the right things. Stay strong.

Carolyn King said...

Hi Alli-
I don't have any insight or wise words...just a hug for you my friend. Keep on pushing--you know your child. I hope that someone will help you get the diagnosis you need for your sweet son. Hang in there. xo
Cammie

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San Diego Mobile Notary said...

I just wanted you to know that I will be praying for you and keeping your family in my thoughts.

Helen Dooley said...

I feel for you and your son. I suffer from a similar thing. My senses think they are super man on steroids. It can really be debilitating for the whole family. It took me 8 yrs to be able to leave my home. That was after finding out what was wrong with me. I was always quirky and such in school now at 42 its horrid. I wish you and your family the best and I will add you into our prayers that they can find some help for you.

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We are bombarded with so many chemicals from our foods and what we breath.
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I love all you mothers who deal with this....try homeopathic medicine also.
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