Special Education Parent Skill Set

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Sitting in the waiting room at one of my kids' therapy appointments, I met a mom who is just starting her special education journey. Our conversation made me realize that being a special education parent you evolve a certain skill set. With practice you get good at some things that may not come naturally to you and are not taught. Most of us learn this by trial and error.

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Communication - Once you are a special needs parent it is important to communicate what your child needs and to advocate for them. You are going to have to communicate with lots of different professionals. Make sure you understand what they are telling you and ask lots of questions. Also make sure they understand what you are telling them. I send a getting to know you letter to my children's educators every year. This year I also discovered it was helpful to share that information with the transportation staff too.

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Ask for what you need - If your child needs something, the sad truth is you are going to have to ask for it. There may be offers for help here and there but if your child or family needs something from a school district, or the local government you most certainly have to ask. The honest truth is that's how they keep their costs down. They sometimes can't help you UNTIL you ask, so ask.

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Hold the professionals accountable- If you don't understand what is going on with your child at school ask for some explanation. Once your child is labeled and designated special needs you get either an IEP or a 504. As a parent of a child with an IEP you can call a meeting to discuss their services at any time of year. If the school district withholds information or services, remind them of your rights. Wrightslaw.com is a great resource for what you can legally advocate for and what you should expect from the professionals serving your child.

Persistence -  Sometimes you will have to ask more than once, or someone will have a bad attitude when you deal with them, and you need to devise a work around. You will have to continue to advocate for your child even in the face of an adversarial attitude and ignorance. Keep trying and keep looking for a solution or resolution. Resources are limited and sometimes they count on you giving up. Don't give up.

Problem solving- I have been a noodler since I was a kid, so problems solving and puzzling out solutions is a natural state for me. Sometimes the problems are bigger than your abilities or experience. Look for solutions in other places if you are not getting what you need from your local school district. Ask for help from local advocacy agencies like your local autism society or your local version of PACER.  I home schooled my son with K-12.com last year when his transition to middle school failed. I also pulled my daughter from the school district when they targeted her autism program for elimination. Even though her school placement last year was far from ideal, it positioned us to be one of the first families to attend the new autism school in the special education district that serves the northern suburbs of our area.

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Pick your battles/Know when to cut your losses-If the school district has decided that all special education students belong in the general student population no matter what their needs, there isn't much you can do about it besides a lawsuit. That takes time, (which you don't have since your child's development is at stake,) and money. You may be able to win a legal battle, but sometimes its just best to look for your solution somewhere else. I am not saying not to go through the steps of advocacy. Talk to your school board, the special education department, even your local newspaper. But sometimes you cannot change the tide and you need to devote your energies elsewhere.

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Networking - Look for other parents either online or in your school district. Having a special needs child can be isolating. There usually aren't enough of us concentrated into our neighborhoods and with enough free time to form a local support group. You may be lucky and get someone from the school district to host a monthly support meeting. You should look to see if there is a special education advisory council in your school district and join. This is where you will get the information of what the school district plans are for special education in the coming months or years.
The online special needs community is there for you 24/7 or at least as often as some of us can get to a computer. There are Facebook pages and groups, as well as lots of blogs to follow (Snagglebox has been one of my favorites.) You may be overwhelmed by all the information available about your child's diagnosis at first, but with time you will find your trusted information sources. The Thinking Person's Guide to Autism, Autism with a side of Fries,  and Shut Up About Your Perfect Kid are some examples of my favorite special needs communities online.

My Special Needs Board on Pinterest

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I have noticed since my last post about Pinterest that the Special Needs community has embraced the online pin board. I may be because it is easy to monitor your kids and walk away from a computer when you are needed, rather than attend a resource group or a parent training in the evening.
I've discovered great resources like Apps for Children with Special Needs, Siva Techined, and the Friendship Circle Blog. Teachers are active on Pinterest, and there are some very creative special ed. teachers, and speech and OT therapists active on the site. Another one of my favorites is TxTerriSweeps, she has a child with Sensory Processing Disorder and has been a source of new ideas for me.
I have found it is a great place to store links and to share information. Be wary if you tend to be obsessive, it can be a time suck, but no more than Twitter or any other social networking site. I have gained access to many experts I may have missed if I was just doing a blind Google search.

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 The images help in guiding you and then you can form links to other Special Needs parents because you  and others may not search special needs, but look for toilet training or IEP, these are pinned on my Special Needs board with many other subjects that I find along the way. This is my catch all board, I sort things out  into discreet categories later by repinning. Its nice since others may find a gem while looking for something else on the board. You may not realize that your toilet training struggle with your autistic kid may be due to interoception, which you would find if looking for Sensory Processing Disorder, but not autism. Special needs kids have many similar struggles along the way, as do their parents. Using a pin board to connect is a way to form a community when it is hard even get out of the house for an evening. It sometimes takes up the slack when it is to hard find an understanding neighbor or friend to ask for advice or information.
                                                       

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• Savvy Advocate Mom and More

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That being said, I had to split my Special Needs board into other boards, since it grows bigger every day. I have tried to keep most of the pins and repinned others onto SPD/Sensory and some other things go onto the "for the kids" board.  So for now my Special Needs Board is the landing pad for the pins and sorting them comes later. If you are not on Pinterest, and would like to be, contact me and I will send you an invite or you can ask for an invite and they will send you one in a week or so. Happy Pinning!

Social Groups for Teaching Social Skills

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I have said before that my kids are system based learners, so I need to give them systems to learn.  The randomness of some social interactions still puzzles them. Heck, some social interactions puzzle me. With kids on the autism spectrum they need systemic ways of learning social rules and manners.
Let's look at a systemic way of teaching some of these skills, social skills groups.  Random Guy has been in a social skills group at school since kindergarten. SensiGirl has her own social group with the Girls' Club at her school. Lunch buddies or peer mentors at school have been helpful too. Some schools don't have these programs, or your kids are at a developmental stage or of an age where they need more help than a school pull out once a week, and you need to find resources for them in your community.
Our community has several venues for teaching these skills, look for similar groups in your area. The Autism Society of Minnesota has several groups now under the umbrella of the Eagle's Nest, divided by age to teach what it means to be social and instrumental social skills. They start at age 8 and go up to age 19 now. There has been a lack of community social outlet services for that older age group, but I am starting to see that change.  Our neighbors in Highland Park have the inclusive Highland Friendship Club for typical and special education teens ages 14 and up. The Jewish Community Center of the Greater St. Paul Area is very inclusive with programs for children and teens. We also have the City of St. Paul Adaptive Recreation, and Special Olympics Minnesota which teaches confidence and team work, as well as a venue for making friends and getting the kids involved in sports. The sharing of interests can open up opportunities for friendships.

Some parents have pointed out there is a distinct lack of social skills groups for ASD girls.  They have said that the American Girl publication A Smart Girl's Guide to Starting Middle School has been extremely helpful in explaining social situations the occur in school.

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You must teach your children what is a friend and not a friend, as bullies will try to make light of aggressive behavior by trying to pass it off as friendship when caught. Random Guy and I have been having lots of discussions about what kind of behavior is that of a friend since he started reading the Wimpy Kid books.  The main character has displayed poor behavior towards his friends on several occasions.  He has blamed his bad behavior on his "best" friend, broken his friends hand and pointedly ignored another classmate and got the other kids to go along with that game. We have talked about how those actions are not those of a true friend.  The fact that the Wimpy Kid is so concerned about popularity also is a teaching tool;  I have told Random Guy that it is not how many kids like you, it's how well you are liked by your friends. If you know a series of books that is in the style of the Wimpy Kids books but shows good friendship behavior, let me know.  I need all the help I can get.

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A special thanks to SensiGirl's teachers, Random Guy's school social worker, and Marsha Baer of the Autism Society of MN
resource: Kay Burke, Ph.D., Hierarchy of Social Skills http://www.phschool.com/eteach/professional_development/teaching_the_social_skills/essay.html

Special Education Parent Support

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One thing that was really hard for me when SensiGirl was moved from a regular ECFE (Early Childhood Family Education,) to Early Childhood SPECIAL Education was the lack of support I experienced. I went from chatty weekly meetings, sitting around a table drinking coffee and tea and snacking on goodies with the other parents, to home by myself with a few instructional informational parent panels a year.  I was lucky that I had my core circle of friends and my mom's club.  I don't know if I have ever felt so lost.

When Random Guy was assessed as needing help by the school district he continued with ECFE with supports and I continued with my parent meetings.  We just added inclusion preschool classes for the remainder of the week. It worked great!  SensiGirl wasn't allowed in the ECFE class after her assessment; she had been causing too many disruptions.  The leaders of the ECFE class said I could stay in the parent group, but now that things were so different for SensiGirl, it didn't provide what I needed anymore.
Luckily the ECSE classes were in the rooms next door to the ECFE classes. SensiGirl would only have to adjust to a new classroom, not a new school or playground.  SensiGirl had a really hard time separating from me when I dropped her off, so we figured out that it was easier for her to leave me.  She could take the bus to school, SensiGirl loves the bus. We are lucky to have had that option.
The part that is missing in many communities is the family education part of special education.  Parents of children with special needs are not only lacking in many resources, they are cast out of the mainstream resources that were once available to them.  They lack support as they embark on a whole new realm of learning: IEPs, 504s, ASD, assisted communication devices, SPD, and on and on.
I am working within my school district to get a special education family education group started. SensiGirl's teacher has been trying to get something started for a while now too. We both want something sustainable, so we are working towards that goal.
What I would really like to see are those weekly meetings again, instead of typical childhood development and parenting strategies, we could discuss special needs parenting strategies, (sensory diets,) etc. and share knowledge of community resources.

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I don't think that will happen next school year, but if we keep plugging at it, I know we can get something like I envision.  Parenting a special needs child requires a special skill set, one that includes advocacy, statistical analysis and research savvy.  Most parents don't come with all those skills, but they can be taught. What can't be taught is the connection with other parents to help you on your journey with raising your child. A helping hand or an open mind to listen when you are at your rope's end.
The other community resources in my area are very specific as to catering to diagnoses: the Autism Society of Minnesota, Pacer and ARC of Minnesota. What I would like to know is if you have anything like I am talking about in your community? How is it done and how can we make it more available in other communities?